Please post your two cents on Herceptin "side effects" real or perceived!

[gonnabstrong]

I had Herceptin through IV's, no port.

[tharrel]

Last herceptin treatment will be this Friday (June 25, 2010). I have had dry eyes throughout treatments. I quit wearing my contacts and used moisturizing drops all the time. I went in for my eye doctor and told him about treatments and eye problems. He prescribed me a new contact prescription that kept eyes moist. They really did help. I still make sure to take out as soon as I get home from work.

I also have had the aches and pains. Joints tend to "freeze up" if I sit for more than 10 to 15 minutes at a time. I am 42 years old and feel so much older.

Here lately I have been getting dizzy when standing up. Checked my blood pressure (I do have high blood pressure) but it is fine.

[weety]

Anyone else have itchy skin (but no visible rash)? It is a little weird in that it only itches on and off--feels almost like a prickly feeling and only on the arms below my elbows and back of hands. Weird, I know.

[ymryan]

Stage IIb, began taking Herceptin with chemo in January 2010. Chemo ended May 2010 and now taking Herceptin every 3 weeks until January 2011. I am very tired shortly after the injection (a nap cures my tiredness). I take a water pill every day to keep down swelling in hands and feet. No other side effects noticed as a result of the Herceptin.

[kristen]

I was dx in 10-03, almost 7 yrs ago. I was on the trial and got the THC combo. I had herceptin every week for 18 I think? and then every three til 52. I was 41 at dx and my eyesight had started to decline by then and I gained weight while on treatment, but lost it all. I have been having insomnia ever since, what I have noticed and I don't know if it's the med's for sleep deprivation, but I still and it is getting worse is the chemo brain, or foggy brain. I cannot remember anything. I see that some people have regained there memory and some haven't. Has anyone noticed it getting worse? My hearing got bad and stayed bad, that was from the carbo, my eyes, getting worse, some will say it's menopause, others will say it's stress related, my teeth are in need of a lot of work, I am to young to feel this old. I am glad I got on the trial, I am ever so grateful, but I would like to know if this is normal aging or if it has something to do with the drugs I was on. When I looked them up for side effects the effects should have stopped when I stopped the treatment, and no, no one from Genetech ever contacted me about side effects. thanks Lani for the post!

[Jackie07]

Kristen,

You are just two years younger than me. I think most of what you've experienced are menopause-related problems. Certainly chemo did not help...

One of the suggestions during treatment is to have our teeth checked. Though Herceptin is not considered 'chemo', it has some strong side effects.

Your memory will come back as long as you 'work on' it. Most of us don't use but 2-3 % of the brain cells in our whole life. More exercise (both physical and mental) will get more 'synapses' which is the connection of the neurons. Go register for a class in your local community college. Any 40+ person will find it difficult to take on a new task. But you will be surprised how fast things will improve once you put your brain to task.

[kristen]

Thank you Jackie, I'm sorry you were experiencing the same thing, but it's a relief to know I am not loosing it, as my kids so kindly remind me : ) I have actually been looking into some classes for what I want to do when I become an empty nester. I do however play a lot of word games to try and keep my mind sharp and I read a lot. I had my hyst. in 05, so how long does it take to go thru menopause? I went thru it twice. First time with chemo, then again w/hyst.

[pibikay]

My wife experiences redness of the eyes for 48-72 Hrs after Herceptin. Is it a common side effect?

[msleslie]

Initial TCH injection was 08/19. Weekly Herceptin for 18weeks and then every 3 weeks up to 52weeks. Not sure of side effects that are specific to Herceptin since I'm taking taxotere, carboplatin, and Tykerb as well.

[msleslie]

Just completed my second weekly dose of herceptin on Thursday and today I noticed that some of my toe nails are beginning to come off. I was expecting them to flake or something but was surprised that they have actually separated from the nail bed.

[AIMhiGh]

I think this is a great thread. Herceptin side effects are so cloudy since they're usually mixed with other treatments. To the gentleman whose wife has the red eyes, i'd guess it's normal. I quit wearing contacts and dry eyes (mine are stinging) come up a lot on this site. Brittle or just thin nails also seem in the majority...Separating from the bed? I'd guess that's more than just the Herceptin. My hair a year after chemo but on Herceptin is still dry and frizzy beyond hope. I never really chalked these up to Herceptin, just chemo-rebound. for mental fuzziness, you might search for the Brain Gym (there's a .org an .com--both related). My hospital's cancer resource center had a session about it. The exercises are very similar to those I've seen used for special education and in neurological screenings, so it seems sound to me. Many of the things you can do in bed or while waiting for your toast to toast. 'can't speak to effectiveness, but there's hope, certainly, that the chemo-brain effect is only temporary. So with all that, would you all continue after the prescribed year?

[msleslie]

About 24hrs after treatment, I had the red eyes as well. I do not wear contacts or glasses. It was very noticeable - my children pointed it out to me.

[MaryAn]

I get very sad after treatment so I need to get myself up and mess around with my niece and nephew. I also have a seriously dry throat. I've been using gum and lemon drops to deal with this.

[v-ness]

11 months into Herceptin and i'll be glad when it's done so i won't look stoned anymore. bob marley's eyes weren't this bloodshot and glassy! valerie

[Ronnie]

Good Morning, 11 years ago my mom had a lumpectomy; we were told it was cancer in situ. She had radiation for less than a year followed by five years of tamoxifen all without circumstance. At 83 mammography found another lump removed by lumpectomy and identified as Her2 +. She’s been receiving Herceptin every three weeks since July. The most profound side effect is forgetfulness and confusion- which seems to be getting worse with each additional treatment. She is a traveling dog groomer and recently she got lost in route to a customer's home she's visited every three weeks for years. She doesn’t remember phone numbers and forgets the day of the week she’s in. Needless to say, this is causing her great concern- frustration and fear. She sees her IM and hematologist this Friday. Curious of anyone can offer suggestions to support her through this specific side effect. In gratitude; -R

[Lien]

There are two things I can think of: dosage could be wrong. Elderly people metabolize differently. Also, it could be a late effect of anaesthesia. The same issue could be seen here. Drugs are tested on adult males, not on children and elderly people. They get these drugs anyway, even though the effects may be very different. Difficult issue. My Dad is taking lots of meds and his neurologist wants him to see a doc who specializes in elderly people's medication and their interactions.

I'm impressed with your mom, though still working at 83.

Jacqueline

[Ronnie]

Lien- thanks for your insight and your kind words re: mom. She is my inspiration. Best-R

[AIMhiGh]

My 17th (last?) Herceptin teatment (1ce/3wks) was 6wks ago. It followed 8 dose-dense rounds of A/C-T each followed by Neulasta shots. The 1st treatment was concurrent with IV Reclast and caused 104+ fever and full-out flu symptoms. Radiation started 8wks later. All was interspersed with staggered mastectomies, an oophorectomy, reconstructive procedures & Femara so I haven't been able to make sense of what's caused what. With about 3 wks since the last Herceptin, I thought I'd share what's changed.
1. My nails are already noticeably stronger.
2. Mental clarity is definately improving.
3. Despite great angst about stopping treatment, my energy level has increased.
4. The above may be due to a 7% EF increase at 4wks post.
5. My eyes have stopped thier constant watering & stinging.
6. My nose has stopped that perpetual, tiny water-spicket drip.
7. The invisible but intensely itchy arm rashes have disappeared.
8. I think my eyelashes and hair (both of which regrew but not-quite-right) are getting stronger.
9. The bones in my feet no longer ache.
All that said, had it not been for the compromised EF I'd be doing my 19th treatment tomorrow, but I thought this might prove helpful to those evaluating their options and looking for causes to their SEs.
Good luck to all of you!

[Pamela]

Hi
I have had five doses of Herceptin once every three weeks and am now in congestive heart failure. Herceptin has been stopped and Im now on heart meds Tritace. Started last week. I had a heart echo back in March this year before I started Chemo. I had 4 doses of Chemo from 5th March to 14th May. I started Herceptin on 4th June. My cancer clinic failed to tell me of another heart echo to be done in August. So I was fitted in for the 8th Sept and the result is heart failure. I am very worried about this and hope all will be okay. Cancer clinic says the damage will reverse in a couple of months, my doctor says hes not sure about that.
I would appreciate some comments about this

[Jackie07]

Sorry for what you've been going through.

I had to stop my Herceptin treatment in January, 2008 because of reduced heart function. We did another MUGA after 4, 5 weeks, but the number had further declined. (I have 'Mitral Valve Prolapse' and had had a full-dose of chemo back in 2003.) There are a couple of members on the board who're able to improve their heart function by exercising and taking certain medication.

Let's hope they will see your post and reply soon. You can also use the 'Search' function to check on previous postings on the subject.

[Pamela]

Thank you for replying. I am very anxious about it all

[AIMhiGh]

Pamela, If your March-May chemo involved Adriamycin I think the damage is much harder to correct than if it was caused by Herceptin. Perhaps there's a way to better trace it to the cause? If it was the Herceptin, I think your outlook from a cardiac perspective is quite good. Good luck!

[pibikay]

Is the phenomenon of the eyes going red during hreceptin infusion a common side effect.
My wife had her 9th and (last) herceptin 0n the 21st and she is having swinging moods and joint pains.The Onc attributes to Herceptin or earlier Chemo.
She will be on Tykerb from Oct 20th

[Jackie07]

PBK,

Read posting number 511, 512, 514 and 518 on this thread. Looks like several members have experienced the same thing and it stops once the treatment ends.

[Carol.hope]

Pamela, I took CoQ10, Hawthorn, and a few others, at the direction of my Naturopath. Got my Ejection Fraction back up in short order - I think 2 months (it had gone down to 35%). I'd recommend looking for a holistic MD or Naturopath to support you. The cardiologists were not into these supplements, but they worked.

[pibikay]

After my wife started Tykerb with Xeloda she started diaorreah.The One prescribed immodium and it works. He wants her to taper it off.But now she has developed itchy rashes.We cintacted the Onc over the phone and he has promised to mail a prescription for a tablet to be taken twice daily to stop the itchy feeling.This was 5 mts ago.Will follow up when the prescription comes.
BTW lamotil did not work for my wife.Immodium one Cap thrice a day worked and it is now twicw a day.

[Mary L]

I was on herceptin every other week for 5 years only taking breaks when my muga showed problems. I have the hot flashes all the time, joint pain, especially in my knees, my hair was very thick and now is thin and limp. My chemo fog is really bad and I forget what I'm saying in the middle of a sentence. I suffer from post nasal drip/cough everyday of my life. My nails are much improved. I suffer from fatigue and take Ginsana for that but I really don't have much energy. I gained 10 lbs but thankfully I was slim when I got my cancer. I have not lost it as I always am hungry between meals and snack. I have very bad neuropathy in both hands and feet. I also am getting cold sores on my lips. Never had that problem before. I had 5 years of red, dry eyes. I always looked like I had pinkeye. That went away after I stopped herceptin. I have been off herceptin for 3 years and I still have most of the side afftects. If I had not received the herceptin, I wouldn't be hear so I guess I can live with them. Mary L

[Mary L]

I forgot to mention that I had to receive herceptin over 2 hours as I had a bad reaction from it when they gave it over 30 minutes. I couldn't breath and I felt like I had an elephant sitting on my chest. I also didn't mention that I still have a red face which I can't stand. It comes and goes but it never fully goes away.

[Delaney]

MaryL, did you try taking an anti histamine for the red face, also aveeno cream is soothing. I had hot red face after taxotere and the oncologist told me to try an anti histamine, it worked. You have probably tried everything so sorry I cant be of more help. The most important thing is that you are NED, I know you would agree with that!

[Mary L]

Hi, yes I had and have all of the side effects that the other women were talking about. It was so interesting to read their stories as I thought I had these problems because I was on Herceptin for 5 years but alot of them were only on it for 1 year or less. My worst probllem is fatigue which no matter how long I sleep or even taking Ginsing{my onc told me to try it as they didi a study of chemo fatigue and this helped} but it really doesn't help. Also, I have neuropathy in both hands and feet. Then of course I have a great case of "chemo fog". I am happy to be alive and cancer free and I can and do deal with my side effects. Hope you are doing well and Herceptin is a wonderful drug and has saved many lives. Mary L

[Unregistered]

Nancy- I am just diagnosed and trying to learn all I can. Can you explain to me why you are on Herceptin now if you were diagnosed so long ago? Also, have you had any mets since your initial treatment ended? Since you have several year experience with this I will take any information/advise you have to offer. pennington.tracy@menlolog.com. Thank you!

[Mary L]

I have been off it for 3 years last month.

[pibikay]

We tried reducing immodium to one.But it did not work She is on two immodiums now.She developed rashes itchy ones too on her arms.The tab given to her worked. She was asked to take 2 Capsules a day.But after day 1 of the capsules the rashes went away,She is now having stomach ache with gas formation

[Iwannagrowold]

Hello,

I posted on another thread. New to this website.

I have just perused the last 4 years of reported herceptin side effects... very useful!!!

I was diagnosed January 2010, 8mm, her2+++, er-,pr-, lymph node neg,
Had 6 rounds of TCH (Feb thru June), during this time weekly herceptin, then triple dose herceptin every 3 weeks thereafter. (until Feb 2011)

I have experienced intermittant episodes of tachycardia, self terminating, not caught on holter monitor, clearly herceptin related. We returned to weekly herceptin.

Currently, during the infusions, I experience subtle but real (at least in my crazy head) pleuritic chest discomfort that radiates to my throat. I also am lightheaded nearing the end and after infusion.

What I haven't seen mentioned, correct me if I am wrong, is the possibility that our side effects may be related to the stabilizers and preservatives used to reconstitute the herceptin, ie polyvinyl chloride, and not necessarily the herceptin itself. Not that this is any more comforting.

I know there is no way to really know the answer to this question, though I wonder if some of us are able to "process" (via hepatic or renal clearance) these chemicals more efficiently than others and thus the differences in side effects. (As with any drug reaction)

What I'm trying to say is its not all in our heads!!

[karenl]

So glad that you started this post!!!! I had invasive ductul carcinoma and ductual cacrinoma in situ. 2.5cm grade 3 invasive and DCIS grade 2, 0/4 nodes. er+,pr+ her 2.5. I had a mastectomy On January 25, 2010 and started carboplatin taxatere and herceptin starting on March 2, 2010 and concluding the CT on June 1, 2011 and herception on December 27th. (terminited myself 3 sessions early). I began to feel the treatments the second round of chemo, the twitching of the eyes, the numbness and tingeling in the hands and feet, dry skin, vision problems, bone and muscle pain, water retention. thin cracking nails, thinning of skin ealsiy bled and also my breathing felt shallow. My memory was effected and I used different words then what I intended. My hip kept on dislocating during treatment. It was all blamed on the chemo!! I also had abdominal swelling. I took alpha liphoic acid and B-6 for the nerve damage and water pills for the water retention. No one ever address the concern that from my hips down my legs felt so heavy and hurt! At 51 yrs. I felt like I was 90 years old. I had to take adavin to sleep at night. I Kept exercising was running, walking and finally switched to yoga as my running was interrupted by my pain and hip displacement. I had contacted some virus around Christmas and could not make my next scheduled appt. due to the virus, then I missed the next one and started feeling the pain going away, my vision being restored and my hip not going out!!! I figured it was from the herception, as I was already 6 months past the chemo. I am so glad that I am off of the drug!!! Now I am hesitant about starting the ferma, I just want to give my body a break. They can reduce breastcncer, but then you damage your body in other ways!! I don't know what is better! I have to sit with my new onc and at this point discuss my recurrance rate with out the Ferna after I do a heart scan and bone density test.

[Mary L]

Karen, you are alive. I too had alot of side effects but whrn you look at the whole picture, you realize if it were not for the Herceptin, we may not be here to complain about the side effects. I am so thankful for Herceptin. It saved my life. I was given a 28% chance to survive 2 years and I am still her NED for over 7 years. I wish you the best. Mary L

[Jackie07]

Karen,

I had experienced the 'heavy legs' after getting the booster shots to increase the white blood cell counts during chemo.

My tumor was only tested 5% ER +, but I've been given Tamoxifen. There's new study showing it's protective even after menopause, and I think that's why my oncologist sent me a note last year to continue with Tamoxifen.

As you have mentioned, those side effects stopped when you discontinued your treatment. I would suggest that you give femera or other drug of the same class a try. You can always stop it when experiencing unbearable side effects.

[karenl]

Thanks Jackie and Mary for your replys. I just wrote to contribute about my side effects. I know I should be grateful, but I am still trying to feel normal again after all of the treatment. I am also second guessing my treatment for me because they were able to get all of the tumor with clear margins and I had 0 nodes. It just seems like overkill and the treatment is so toxic.

[MCS]

well. it's been a long time for me from herceptin. However, all the side effects you described, I had with Taxol, not herceptin.
I took CoQ10 for the heart. I don't run but I took a walk every morning around the block.
I used Sarna skin cream for the dry skin. Used Biotene for dry mouth too.
For the numbness and twitch on feet, I just massaged and massaged. It was while drivng, I stopped and massaged.
The aches, they don't go away with anything. I took vicodent and it did not work at all. actually ibuprofen worked better sometimes. i ended up in bed early evening, usually during the day I would not get it
Genetically, I have never slept well so I was taking ambien before bc. But i was placed on ativan due to anxiety. ativan will not help you to sleep-ask your doc to give you someting to sleep
yoga will be good for you. i do it now and it's so good for pain, flexibility and just your mind.
try meditating-I know it's hard with all going on. put your favorite music- I like the theme from the movie out of africa a lot-then close the door and breathe yoga breath, give yourself 20minutes a day.
look at funny movies
Hope it helps a bit
XO
maria

I'

[sarah]

Hello Karen,
we are all nodding out heads reading your post and have suffered many of the side effects but remember the best one is LIFE and we are all here thanks to these poisonous drugs.
Most of my worst side effects were due to the Taxol. I certainly couldn't have run or do other stuff while on it and I'm not sure one should put one's body through so much when you are "recovering" from heavy drugs - I suspect it can further weaken you but....... not a doctor so....
Femara, yes it's nasty but I would not have wanted to risk not taking it. most ot the side effects are manageable but you do need to check if it's eating your bones. It started eating mine and I had to take Clastoban to build back up my bones and they did improve.
Reading was my best distraction.
Be happy every day and if you find your moods are swinging wildly (not necessarily sad but angry and impatient or moody) consider taking a light anti-depressive, I know it helped me when the Femara (I think it was the Femara) made me moody.
Now off everything and feeling good so far.
take care

[NanaJoni]

I'm in my 9th month of Herceptin - Herceptin only since August 2010. I have to say I don't have much in the way of side effects - but a few annoying things: my nails have gotten extremely thin and they peel and split. I keep a nail strengthener on them and get regular manicures to keep the cuticles neat (it's also a mood booster to get pampered). Since I stopped chemo and went to Herceptin only, my eyelashes have fallen out completely 3 times. Can't do much about that but they come back nice and thick so I won't complain. I usually feel a little tired during the week after tx but napping fixes that nicely. I have started having some really serious problems with gastro/diarrhea though. This started about two months ago. Of course, my onc says it's not the Herceptin but the only other drug I'm on is warfarin which could be part of the problem. The nurse practitioner in my onc's office was very helpful. She thinks my system (stomach, intestines, colon) have just been bombarded by too many chemicals, antiobiotics and other drugs which resulted in all the good and bad bacteria have been whacked. So she put me on a probiotic, an anti-spasmodic and a special diet. I also had a colonoscopy which was good (I don't have to have another one of those for 8 yrs). So not sure what's up - just trying to deal with each thing as it comes up. I really feel better in many ways than I did a year ago before the bc. I've been feeling some dread and sadness as the one-year anniversary of finding a lump and getting a cancer diagnosis is approaching. Don't know whether I'll hide in bed on those two days in March or maybe do a total spa day or lunch with friends. I'm trying to plan on doing the more upbeat positive activities but sometimes things just crash without warning. Just taking it a day at a time.

[kklouisiana]

The only side effect I have may not be femara or herceptin but my ears drain constantly. Periodically, like tonight for instance, I woke up and my left ear is bleeding bright red blood. Could this be a side effect?

[NanaJoni]

KK - I've never heard of any bleeding being a side effect of Herceptin. I would advise you to call your oncologist ASAP and report this to him. The only side effects I have from Herceptin are some mild fatigue in the first few days after a treatment and a constantly runny nose. I take Zyrtec for the nose dripping and it ususally takes care of it.

[kklouisiana]

Thanks, i was hoping it was a side effect, but have an appt with ENT tomorrow morning. Other than this, I have had excellent blood tests during chemo and herceptin and no side effects.

[kklouisiana]

my diagnosis was April 1, 2010. i haven't even considered it an anniversary. i do have very thin and ridged nails on my fingers, though. my nails used to be very strong and grew way too fast. i take pro-biotics and they are great!! Glad you are taking them, too.

[feonad]

Headache. I take it over one hour. Still get a little headache that lasts.

[das]

For some reason the herceptin only infusions aggravate my numbness left over from chemo. I have been reassured that herceptin isn't related to numbness and yet this is the second time it has happened. If anyone has any ideas I would appreciate any advice.

[laurab]

I have never had chemo. and am currently on Herceptin every 3 weeks for one year. Here are some side effects I believe are related to the Herceptin:
. drippy nose with crusty stuff - very sore
. vaginal dryness , itchy,burning
. mouth sores - cheeks and just inside lips
. chemical smell coming through skin for about 24 hours .
. same chemical smell in urine for about 24 hours

Anybody else experience this?


Laura - stage 1 , no lymph nodes, hormone positive, HER2 positive
surgery (lumpectomy) , mammosite radiation, taking Arimidex and Herceptin infustions every 3 weeks.

[Jackie07]

Sounds like very 'typical' Herceptin effect. I was having very bad mouth sores and was prescribed a mouth wash that contained maalox, lydocaine, and benedryl (do a 'mouth sore' search on this site and you will find several threads on the subject)

There's a non-hormone vaginal moisturizer called 'Replense' that's been recommended by many on different support groups and I've found effective in relieving the irritation.

And I remember the metalic taste on my tongue...

Hang in there. Remember to eat well and get plenty of rest...

[Mary L]

I was on Herceptin for 4 years. My side effects were dry, red eyes, runny nose, brittle nails, headache for several days after Herceptin and red, hot face several times a day. It was all worth it as it saved my life. Mary L

[AmyHer2+++]

I have been on herceptin now for 3 months... infusion every 3 weeks. I have not had any chemo. My side effects are constant runny nose, acne after my infusions and severely irregular periods. My periods are coming every 2 to 3 weeks. Before I started herceptin I woud get my period every 28 days like clock work. I have asked my oncologist if the irregular/ more frequent periods were "normal" but he told me it was not a known side effect. Any other women experience this?

diagnosed at age 33 (Sept 2010)
DCIS and 3.0mm invasive tumor
ER-, PR-, Her2+++
opted for bi-lateral mast. with silicone implants

[Unregistered]

Me too me too. Gosh I feel so relieved that other people experience these symptoms. Joint aches, lower energy levels, and my scalp hurts sometimes. Oh and flaky nails. Hey ho better than being dead eh. But my chemo nurses continue to state that there are no side fx from Herceptin.

[KLW]

I get Herceptin every 3 wks, 8 to go. The only side effects I'm having are runny nose, brittle nails, feel a little tired and lower half achey, but that may be due to the Tamoxifen, which I started 3/20/10.

Diagnosed 6/17/10 at the age of 40
Stage 2A
Ductal and lobular
Two 2cm tumours
Double Mast. 7/22/10
ER PR + HER 2 +
treatment AC T 8/10-1/11
Herceptin every 3 wks through Oct '11

[Matria]

I am new to this site, but far along in the treatment phase. I was particularly interested in this section, because of the inquiry on side effects, and how little there is out there. The PR out there, is very little "side effects" with Herceptin. I am 58y.o., in july diagnosed with two tumors (one triple negative; other hormone negative, HER2+; Stage II, 1 node with micro met; 3 cm. Treatment typical: mastectomy (3/31 completed second phase of reconstruction, tissue expander removed; implant in); Chemo: ACx4; Taxol/Herceptin x 12 (weekly) currently Herceptin q 3 weeks (Until November). I have decided to discontinue Hercpetin because of the marked "cognitive impairment" side effects. I have been off Taxol now for 4 months, and while I feel better in every way, emotionally stable, fatigue improved, energy improved, peripheral neurapathy gone, (toenails-still yuckey); hair growing in, eyebrows and eyelashes back, the "cognitive impairment" continues, and in fact getting worse. I feel the impairment side effect post-Herceptin severely for a week. But I have noticed, my better weeks are worsening as well. My ability to follow meetings, power point presentation, complexed decision making,calculating numbers, public speaking very difficult. I went from a confident executive to a ......not sure. Similar to a stroke patient, having to relearn everything. I see my analytical and intellectual acumen at 50% post treatment, and 65-70% during my good times. The quality of life issue is major. My career could be in jeopardy. I will have been on Herceptin for 6 months. I feel okay about my decision, since there are not studies out there showing a difference between one year and six months (there are studies going on now looking at six month regimens for early H2+ breast cancer). The one year duration is the standard, only because the clinical trials were done for one year. I'm in the medical field, so my decision is based on current evidence, and alot of research!! My onc had agreed to stop at 9 months if this continued, but at 6 months--I need to stop now.

I'd like to hear more about those with "cognitive impairment" issues related to Herceptin only. I know about the the AC and Taxol CI affects, and other adjuvent therapies, but what about Herceptin? I am tired of people calling this "chemobrain" as if this is a small price to pay for treatment. This is truly a real diagnosis of chemotherapy-induced cognitive impairment. Thanks!!!

[Jackie07]

Matria,

The molecule of Herceptin is usually considered too big to cross the blood-brain barrier in our brain (that's why 'Tykerb' is often used for brain mets - because its molecure is much smaller.) But new studies do show effectiveness of Herceptin even for brain mets. Chemobrain is, most likely just like the name suggested, caused by chemo agents - especially anthracyclines such as cytoxan, epirubicin, ...etc.

It takes a while for the problems to surface. Most likely the damage caused by chemotherapy did not reveal itself until after you had begun Herceptin-only infusion.

There are studies (at least one British study came to mind) showing 9 (or 12?) weeks woth of Herceptin achieves 98% the effect of the one year schedule. Breast cancer, especially Her2 breast cancer, has a bad reputation of recurring - either in the same area or the other breast, or even sometimes in other organs. It is prudent for us to remain vigilant.

Researchers are paying more and more attention to details about the cognitive decline related to breast cancer treatment. For example, the following abstract focuses on the very beginning of our cancer journey. It concludes that diagnosis and surgery do not have much effect on the cognitive decline:

Acta Oncol. (http://javascript<b></b>:AL_get(this, 'jour', 'Acta Oncol.');) 2011 May 9. [Epub ahead of print]
The effects of breast cancer diagnosis and surgery on cognitive functions.

Hedayati E (http://her2support.org/pubmed?term=%22Hedayati%20E%22%5BAuthor%5D), Schedin A (http://her2support.org/pubmed?term=%22Schedin%20A%22%5BAuthor%5D), Nyman H (http://her2support.org/pubmed?term=%22Nyman%20H%22%5BAuthor%5D), Alinaghizadeh H (http://her2support.org/pubmed?term=%22Alinaghizadeh%20H%22%5BAuthor%5D), Albertsson M (http://her2support.org/pubmed?term=%22Albertsson%20M%22%5BAuthor%5D).
Source

Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.

Abstract

Abstract Background.

Women with breast cancer (BC) report cognitive impairment. Receiving a BC diagnosis may have a negative psychological impact. We sought to determine whether a diagnosis of BC and subsequent surgical treatment reduced cognitive function.

Material and methods. We recruited women, who had a positive radiographic finding, consecutively from the mammography screening program at Stockholm South General Hospital.

All subjects completed the Headminder Web-based neuropsychological battery Cognitive Stability Index (CSI) for response speed, processing speed, memory, and attention at enrolment (T1, Baseline). CSI was administered again, after BC was ruled out, or after sector resection or mastectomy, if BC was confirmed by cytology or biopsy (T2, Retest). Results and conclusion. Of the 148 women approached, 146 were enrolled; 69 were healthy and 77 had BC.

Comparison between groups at baseline, according to independent t-test, showed significant differences in response speed and processing speed. Cognitive abilities did not decline in either group on any of the measured domains.

Our results suggest that a diagnosis of BC and subsequent surgery is not associated with substantial cognitive decline at retest. However, the lack of improvement in attention at retest among BC patients may be suggestive of a decline.



Ps. Idelle Davidson, one of our members on this Board, has written (with Dr. Dan Silverman) a very nice book entitled "Your brain after chemo". There are quite a few threads on the topic of chemobrain and/or 'cognitive decline' here on the Board. You can use the 'search' window on top to look them up.

[Unregistered]

I was diagnosed with Stage IV breast cancer in 2006 with mets to liver. I have been taking Herceptin since May of 2006. I really did not have any bad side effects until this year - I took it once a week and usually just had a headache on the day of treatment and some fatigue. I had been having some bad shoulder and neck pain which is irritated by the use of the port-a-cath so they suggested switching me to the once every 3 week infusion. This really messed things up. I started feeling very tired and each successive treatment my bone and joint pain started getting really bad - it got to the point that my knee would feel like it was going to give out and I could not walk on it the pain was so bad(I am only 35 years old so I should be capable of walking around but I was having to use a cane.) I also had hip and ankle pain on that same side as well as upper back pain. I noticed it would start to lessen as I was nearing the end of the cycle getting ready for the next dose and as soon as I got the next dose it would get really bad again. I called the onc. and they switched me back to the weekly which I have been doing for about 5 weeks now. The symptoms are less severe than the 3 week dose but the knee, ankle and back pain has not gone away it is just not as severe - it does get worse on treatment day and slowly lessens as the week goes by but it is really starting to wear on me. I am thankful for this drug as I would probably be dead without it but taking this drug for over 5 years now is starting to take it's toll. The onc. says I will take it until it stops working or I have heart issues but I am thinking on asking if I can have a short break and see if that helps - I don't know if he will do it or not but a girl can hope right?

[Mary L]

Hello, my name is Mary and Herceptin saved my life. I was diag. with Inflammatory Breast Cancer stage IIIb and given a 28% chance of surviving 2 years. Herceptin saved my life and this Oct 2011 I will be an 8 year survivor. Yes, I had side effects, quite a few of them and most of them are going away. The alternative for me was to die. I am so thankful for Herceptin and if my cancer does return, I know Herceptin will be there for me. I wish you the very best. I just wanted to tell you my story with Herceptin. Best Wishes, Mary L

[snolan]

I get Herceptin every 3 weeks. I too have a runny nose, nice to know it's not just me. Had chemo TCH protocol so have been on Herceptin since Aug of 2010, started Tamxifin in March after radiation. Have not had any fatigue or other side effects, my finger nails fell off from chemo but have grown back and I take calcium and that seems to help keep them from breaking so much. I exercise alot to include racing mountain bikes so I haven't felt any fatigue. Do get chemical smell in urine for a couple of days after treatment.

Diagnosis 6/8/10 DCIS, 7/26/10 HER2+ stage I at age 41
(B) mastectomy w reconstruction but (L) got infected and had to take out expander, will do recon later in year. TCH protocol for chemo went well with no complications.

[Raquel]

Wow! T hought it was just me but I've had many of the same side effects:eyelahes fell out,periods every couple weeks,fatigue,runny nose,vaginal dryness, weight gain! Of course my Dr said they are not side effects of the herceptin! Glad to know it's not just me!I've been on the stuff 4 years now!

[Jackie07]

Looks like this new thread
http://her2support.org/vbulletin/showthread.php?p=254302#post254302
(Herceptin and leg and joint pains)
would bridge the gap of the past two months here.

[Ruth2]

Can't say that I have bad side effects, four more months to go, and my heart test has remained good. Mine are the usual milder ones. But I do have a sort of depression that comes with it, no matter how happy I feel psychologically (or maybe I mean cognitively). Sometimes it passes quickly with a spontaneous burst of tears. Other times it lingers. I also wonder lately about a feeling of walking/falling (not quite vertigo, not quite dizziness, but something). I thought slight neuropathy from chemo was resolving itself, but perhaps not quite yet.

[jra40]

I finished Taxol at the end of July and I am now on weekly treatments of Herceptin. I am glad to be feeling myself again but have noticed some side effects. I am having joint pains in my hands at night. It hurts from my knuckles to the top of my fingertips. Has anyone had this?

I also have leg/joint pains when I stand up - I feel like a 90 year old woman sometimes! It doesn't last long and I am able to workout on my treadmill everyday but it has been a little bit of a pain. I am also experiencing weight gain around my abdominal area. Real happy about this one!!

Other than that, I have nothing else to complain about. I'm still on Tykerb and the diarrhea has tapered off. Hair is slow growing but all is coming back on my eyebrows/eyelashes too. Awaiting lumpectomy surgery on August 31st so will be happy to go to every 3 weeks of Herceptin rather than weekly.

[tiquer505]

I have been on Herceptin for 4+ years and had Herceptin with Gemzar in the year prior to that. I have Herceptin infusions every 3 weeks. My symptoms: VERY fragile nails, thinning/less tuxture to hair, dry eyes with abnormal dripping, anxiety/crankiness day after, 24-hour water retention. Prior to Hercptin (I have had 4 breast cancer recurrences since 1997 and am hormone- & Her2Nu+), I have have CMF, Taxotere, Adriamycin, Herceptin with Gemzar and now Herceptin alone. I am stage IV BC and 69 years old.

[Ruth2]

Back again, after my perky posting above.

I wonder if blood oxygen levels have been affected; that number has been down for a month, and I have been trying to figure out how to make it go back up again (exercise, diet, etc.). I will have another echocardiogram soon; others have showed stability through treatment.

I would like to know more about how blood oxygen works (I sort of do in a very general way) if some of you have dealt with that.

I am also dealing with lymphedema (not a side effect of Herceptin) and sorting out some effects of that from general side effects of treatment.

[kklouisiana]

I had my last bag of herceptin July 5, 2011, after a year of treatment. The only drug I take is a generic brand of femara. My bloodwork throughout my ordeal from June 2010 -July 2011 has been excellent. My hair has grown back thick and curly so far. My nails on my hands remain thin, brittle and split easily which is completely opposite of how they were before. My only discomfort is sometimes when I get up, my butt feels like I've been sitting on metal bleachers for hours but it quickly goes away. Today was my first visit after getting off treatments and my bloodwork was again excellent. I have lost 20 pounds since June due to making sure I eat around 1200 calories a day. Basically, I have been blessed. May God bless you all, as He has done for me...

[Alieh]

I had my first doze of Herceptin last week along with chemo drugs; today (one week later) I am experiencing heart palpitation. Is this a normal side effect and will it go away in a couple of days? I appreciate your comments.

[NEDenise]

Alieh,
It's probably nothing, but I'd definitely call the doctor. You only have one heart...better safe than sorry. Right?
Keep us posted.
Denise

[Unregistered]

Denise,
Thank you for responding. I called the doctor's office and they told me this was a common side effect and it should go away in a couple of days. You are right, we only have one heart; I am beginning to think whether I should stop the treatment all together. What is the purpose of staying alive with a damaged heart.
Alieh

[Bunty]

Hi all, I've been on Herceptin for nearly four years now, and find it very tolerable. I do have to use eye drops when I get up in the morning as my eyes are dry, and inside my nose gets a bit irritated, but this can be alleviated with vaseline. I do have brittle nails that sometimes split. All in all, not too bad!
Cheers Marie

[NEDenise]

Alieh,
Are you being monitored by echocardiagram, or MUGA scan, every three months or so? If not, ask about that, I think it's "standard of care" right now...so your insurance company should cover it.
Then, you'd know about any heart issues before they were irreversible. Peace of mind is important!
Stay strong!
Denise

[pibikay]

This thread contains alot on the side efects of herceptin.What about the side effects of Tykerb/Xeloda combination.During the week she is on xeloda (with tykerb) she is more tired and less appetite and the colour of her palms turn dark.She occasionally gets preesure or pain in the lower abdominal region she says (THE PAIN AS SHE WAS HAVING DURING HER aamPERIODS) I am wondering whether this is a common side effect of Tykerb

[chrisy]

Didn't have those side effects with tykerb, but I do now with xeloda. Maybe it's the xeloda. The tiredness and digestive issues sent start until after a couple of months for me

[laurab]

This reply is for those few who are having Herceptin without any chemotherapy - at all.
I am 3/4 through my Herceptin infusions. At this point , the only side effect that I see is that my fingernails split , peel , break and are now down to "the nubbin". I have had two infections related to this. Compared to any other side effects - this is nothing ; especially when you consider that Herceptin is saving my life!

[harrie]

This is one of the threads most notorious for spammers. Have you noticed?

[StephN]

Yes, Harrie - I take some out almost every day! They like to go where the most posts are thinking that is where their message will be seen. Yes, I (and other moderators) SEE them. They never sit here long.

[tricia keegan]

Lani suggested I post a link to this thread here, I'm six and a half years out now and hardly remember posting it at the time until someone brought it forward but its good to know even the bad times are forgotten with time:)
http://her2support.org/vbulletin/showthread.php?t=23666

[pmm10414]

Amen! I am not sure when you start counting, but after 3 years from diagnosis I don't think about it first thing when I wake up. I went for PET scan today so the wait begins!

[elcalabrese]

I too received an email about reposting my experience with Herceptin. I have been on this drug since 2002 after being dx with metastatic disease. Other than the fingernail issues and occasional shortness of breath after treatment, I experience no real side effects anymore. I'm not sure if I have just become used to the aches and pains and cognitive issues or if it's just part of getting older and not the treatment after all. After years of weekly treatments, I switched to every 3 weeks a few years back but had an issue with my hands peeling and burning. So I went back to weekly for awhile then switched to the every 3 weeks schedule again. I am able to function after treatment but I choose to go home and rest - letting the drug do it's job. I plan on staying on the treatment as long as I can.

[pmm10414]

I had hand issues and thought it was from taxol but it continued when I went to Herceptin only. I felt it is better to deal with that than the chance of my cancer coming back if I stopped early.

[bcsurvivor]

I was also on Taxol 1x per week for 12 weeks and Herceptin. After the chemo ended, the Herceptin continued to finish the year. I made it through! I also had memory/word retrieval issues, week nails, fatique, hot flashes. The chemo put my right in menapause.
I'm not sure what was the Taxol and what was the Herceptin.
I ended the Herceptin in April 2011, and since then, I am back at work and doing well. I still have good and bad days but mentally and physically, I'm doing better. I do Sudoku puzzles to improve my mental clarity. If I need a question repeated, I just ask. It is what it is and I'm alive :-)

I'm glad I may the decisions that I did. I had early stage Her2neu +++ stage 1a, High grade with no lymph node involvement. I had a bilateral mastectomy and reconstruction because of my past history of breast tumors, scar tissue, and dense breast tissue. I don't regret taking an aggressive stand. It turned out to be the best choice for me.

bcsurvivor

[pmm10414]

I agree. It gives you a sense of security. I could not imagine going through taxol again.

[Kroesen]

I have posted pictures on a blog that I started today. I want to help others who have similar symptoms. I may be ending herceptin on Friday. After a swollen tongue, I'm not sure if I have much of a choice. Check out my blog if you would like to see what a herceptin rash looks like. http://kroesen-cancer.blogspot.com/

[pmm10414]

While I was being treated my tongue swelled up, but my Onc and I decided it was from another drug I was taking. We stopped it and the swelling stopped. Let's hope all goes well for you. Sending hugs your way.

[Kroesen]

Thanks PMM. I am feeling at peace that my doctor will help me make the right decision.

[iamlisaann]

I was on Herceptin weekly for 1 year. 9 months Herceptin alone. No symptoms or side effects at all. Hope this helps.

[Rody]

Have been on Herceptin every week since 10/07 for 1 year following TC chemo. No side effects noted. Restarted Herceptin after mets in lungs 6/09 and continue on every 3 weeks with different chemo regimins. Major side effects are constant liquid dripping nose, bleeding nose, dry eyes but dripping overflowing tears when up and active. Other side effects come and go and seem to be related to chemo drugs.
Thanks, Kay

[rhondalea]

I found this the other day when I was trying to distinguish between leftover side effects from Taxol and current side effects from Herceptin. At the moment, it's not a useful link for me, but I could not find any previous mention (could just be my continuing brain boggle), and it seems that at least one poster here developed sarcoidosis (although there was nothing in her post to indicate it was caused by Herceptin). Still, forewarned is forearmed, and I hope it might help someone someday.

http://chestjournal.chestpubs.org/cgi/content/meeting_abstract/140/4_MeetingAbstracts/56A

Trastuzumab Induced Sarcoidosis Mimicking Metastatic Carcinoma

INTRODUCTION: Trastuzumab, a humanized monoclonal antibody against the extracellular domain of the human epidermal growth factor receptor 2 (HER2), is indicated for the treatment of HER2-positive early or metastatic breast cancer. Common pulmonary complications include dyspnea and cough. We report a case of probable trastuzumab related adverse reaction in a breast cancer patient with clinical manifestations resembling sarcoidosis and characterized by noncaseating granulomas in skin, bone and hilar lymph nodes.

[...]

[Kroesen]

Thanks everyone for your well wishes. Here is an update of my day. I'm off herceptin until further notice. My rash is continuing to itch and burn. I was sent to allergist again today. He put me on stronger steroids, hydrocort, and two other meds. I meet with him again next Friday to see if those meds have helped at all.

I also met with radiologist and see him again next Tuesday.

I'm okay with the decision to stop right now. I don't think I could take any more breakouts. The rash continues to climb up my neck.

Praying another week will help clear it up some if not all.

Have a Merry Christmas everyone.

[pmm10414]

Let think good thoughts. Have you tried oatmeal bath for itching?

[Kroesen]

Yes I have. Doesn't even come close to touching it. I even took an ice cold bath that about made my heart stop (not literally). I'm sitting around now in a short sleeve shirt and have goosebumps all over. Allergist said to keep it cool. Well, I'm the coolest person I know right now (LOL).

[pmm10414]

Poor thing. I was put on atarax when I had reaction to hormonal changes when I had my son. It worked. I was so itchy I was miserable too. They had a cream too.

[Kroesen]

The allergist put me on Atarax (Hydroxyzine) yesterday. Hopefully that will get me some relief. I've also been placed on prednisone and hydro. lotion. I'm feeling shaky and hoping that I won't turn mean while on this med. I remember my dad on it. It didn't bring out the pleasant side of him.

Everyone have a Merry Christmas and a Happy New Year. I plan on looking forward to the possibilities of next year versus the probabilities.

Thanks all.

[Ms.Judi]

I'm a Stage 3, ER/PR (-), Her2 (3+), post left mastectomy and currently on 3rd cycle of 6 TCH treatment. Herceptin is given every week until TC is finished then am scheduled to go to 3 week Herceptin infusions until Nov 2012. I won't really be able to assess the other effects until I'm on Herceptin only, but I am experiencing leg, foot and hand cramping as well as eye, nose and throat issues.

I'm so glad to know I'm not the only one with the nasal/eye issues. My onc nurse keeps suggesting an antibiotic, but I keep insisting the symptoms are more allergy-like. It's hard for me to separate my symptoms since I'm on 3 drug regimen but after reading these postings, I'm more convinced that the Herceptin is responsible for the ENT issues and it's not a "recurrent "head cold". My healthcare nurse advisor suggested I see my eye specialist (I have an appointment mid January so i'll let you know the outcome then) because she had another Herceptin patient with the runny and/or dry, scratchy eye symptoms who was successfully treated in office with laser surgery to her tear ducts. The eye doc said they were blocked, he could only attribute it to her current treatment since she had no history of a tear duct problem before Herceptin.

I also found a homeopathic nasal spray called "Allergy Buster" (OTC at drugstore) that really, really takes care of the nasal congestion and headache. The downside is it gives a really, really brief but intense nose burn. My husband tried it and said he got a mild burning sensation, but mine is definitely more than mild. We suspect it's because I had nasal irritation when I started using. But the relief it gives me, especially at night, is worth the few seconds of discomfort. P.S. We looked up the ingredients on the net and the main one is Capsacin. Duh! Ya think that might explain the nose burn?
Of course, check with your doc before using, but I went for that rather than Afrin or other OTC nasal sprays because it doesn't have a rebound effect like the other sprays when used over time.

[pmm10414]

They put me on nasonex and I seem to do better. At my last PET scan they said there were permanent narrowing to my right nasal passage. I have been using saline and it seems to relieve discomfort some.

[NanaJoni]

my onc nurses told me to use generic Claritin and it helped a lot.

[pmm10414]

Me too I still use it.

[rhondalea]

Here's a useful link about Herceptin side effects:

http://www.drugcite.com/?q=herceptin

"This report contains aggregated drug side effects and adverse events for Herceptin. The data has been pulled from the United States Food and Drug Administration's (US FDA) Adverse Event Reporting System (AERS), a database containing more than 4,000,000 adverse event reports."

The main site, where you can look up any drug, is here:

http://drugcite.com/

[Kroesen]

rhondalea,

Thanks for the information. I think my rash is finally disappearing. I am so excited. I still see it all over my body, but it isn't as raging red as it has been. Hopefully, we will be ready to figure out what happened so it doesn't happen again. I start RAD next Wednesday so hoping it is gone before then.

Arlyce

[atuck]

I know this is not HER2 related but my husband is on procarbazine for a brain tumor & he has come out in a rash exactly the same & it is driving him crazy, it seems a lot of these harsh drugs have nasty side affects, he has been told to come of his drug until it subsides.

[pmm10414]

The atarax comes in a cream also. It drove me crazy until I used pills and cream.

[Kroesen]

I have decided that one cannot tell what side effects are from which drugs. After working with an allergist and starting steroids and antihistamines, I figured out what gave me my skin reaction. I broke out an hour after they placed heparin in my port. It may not have been the Herceptin after all. So if there is anyone out there that is having similar issues, please don't right away focus on one med. Thanks for all of your responses. Two RADS left and then 6 more months of Herceptin.

[mbhamel]

I am 51 years old. I am getting many of the same symptoms in the previous posts here. Heavy legs, low back pain and tingling, very congested nose, slowed thinking and forgetfulness, night sweats not really sweating just terrible hot flashes waking me up in the middle of the night and can't sleep those only started since getting the Herceptin every 3 weeks. My nueropathy from the Taxol/Herceptin is still there in my hands and feet. My EF went from 62% when finishing AC down to 55% at my last echo. My oncologist called last week and said my Alkaline Phosphatase is also elevated and she wants to run some different blood tests when I come back to see her in three weeks. I just hope it's not mets to the liver or bones. I saw a couple of other posts saying that has happened to them and turned out to be not mets. I had my transplant surgery a week before that blood test so don't know if there was any meds in me from that still. I am thinking of asking my onc. to change it the Herceptin to every week to see if that makes a difference. But, I can live with it hoping the Herceptin is keeping the Cancer from spreading. I haven't had any scans or anything since last April so I'm keeping my fingers crossed and praying very hard.

Some other medications I am on is1mg of Ativan to help with the sleep issues. I have a script for 5mg of Hydrocodone but I took them very sparingly, Advair inhaler for Athsma, Fluctisone Nose Spray, and iron supplements.

[oregon]

I started Herceptin along with chemo in February '11. After surgery, I resumed Herceptin treatments and will continue them for a few more months. Originally I was on Herceptin every three weeks, and a month ago I moved to weekly treatments because the oncologist believed that my body may not take such a hit, if the herceptin was consistently in my system at a lower level.

I experience muscle weakness, stiffness in joints, and possibly bone degeneration - one of the my docs said it was degenerative :-(. I mainly deal with fatigue the day after the infusion

[pmm10414]

I did the same. There are some articles on Internet that state weekly dose is better because it keeps constant dose in body. I had same symptoms even with weekly dose, but I can't imagine what it would have been like with larger dose every 3 weeks.

[YNieves]

I was on Herceptin for a year, completed in 2010. 3 months later I had a rash on my chest which turned out to be local reoccurrence. I took Xeloda and Tykerb, I finished in the Xeloda on 8/2011 (and stayed on 1250mg of Tykerb daily. Most recent Petscan (1/2012) shows I have a 1.4cm lymph node on my axilla on the right side. All previous cancer was on left and chest wall. Onc. is thinking of putting me back on Herceptin and staying on the Tykerb. I am Ner 2 neu, Er/PR neg. My 1st Herceptin infusion, I had an anaphylactic reaction and was rushed to ER. I had to be desensitized to herceptin before I could accept it, 6 months later. Can all this posion in our bodies be making things worse.? I have had lumpectomy, mastectomy, radiation (twice) and hypothermia. Cytoxan, Taxotere, then adriamyacin and cytoxin. Herceptin for a year alone, then navelbine. Xeloda, Tykerb. Original Ca was DCIS in 2004. Cancer returned in 2009 as Her 2 neu. My side effects have been minimal on the tykerb alone. Very itchy dry skin on lower legs. Some fatigue. Rash around ankles (red spots?) I'll keep you posted once I start Herceptin/tykerb combo. Probably won't be till March.

[sarah]

Are you on Femara? Femara caused bone loss for me and I took Clastoban to help my bones.

[hello sunshine]

I'm on my 11/17 herceptin. i'm having bad reactions, (last 2) very sore rash, breathless, splitting nails, weight gain.Some joint pain. I'm going to keep going untill i've had enough as it's making me unwell. My team are monitoring me.

[JSRP]

Hi ,

My mother took herceptin injection 10 times. Since last three days she is feeling with neurotic problems like drowzy ness and feeling tired. She is behaving like loosing some memory. This was happend after she gets her 10th herceptin injection. So can we continue the treatment further or not? Please suggest me.

[MCS]

Please check some of my earlier responses. I took Herceptin right after it was approved, thank God, just in time. For me there was no choice of once a week. I took it every three weeks.
I did suffer from severe bone ache that could not be taken away with heavy meds (vicadent.etc). Instead, Ibuprofen worked and lying on my side in bed. this was usually the first week afer treatment. So that's it, you have to bear it-think of those that did not have this herceptin
As to bone loss, well because of my age (56now), that occurred any way and I also have had my ovaries removed. Yes it has happened more rapidly if the big C did not occur.
As to hot flashes, I had them before and actually improved afterward. I started at 40!
I had chemo brain from the Adryicin treatment and to tell you the truth, I still have some chemo brain-it's just not an excuse that I forget things.

But I took it all like a girl, because I rather deal with all this and know that my cancer is held back for a while.

Use meditation, breathing, camomile, listening to favorite music softly in your room for the pain. Hot flashes, I know you sweat like a pig and then cold, but all of us girls go through that.

Truly it is my sincerest wish I had a magic wand and pass it around all of us and get rid of all of this. And not just for bc, but my lymphoma girlfriends, my bone cancer girfriends and so on....

God bless all of you. Press on this fight.

xoxo

MCS (maria)

[kstrahm]

I have been taking Herceptin for 6 years now. I was diagnosed right off the bat at 30 years old with stage IV with liver mets and started with Taxol, Carboplatinum, Hercptin and Femara as well as the Lupron shot to put me in menopause. I started all of that in April of 2006 and did that until Dec. 2006 at which time I switched to Herceptin only along with Femara and the Lupron - since that time I have recently had a hysterectomy so no more lupron so I am currently taking Femara and weekly Herceptin. I am starting to feel more side effects from the Herceptin - the day of infusion I get a headache with severe stuffiness and pressure in my head and am achy in my upper back and shoulders as well as knees - the most concerning thing I have noticed lately is little zings and pings all over my body which feels like needles poking me - it only lasts for a few seconds and then is gone - also I have burning and numbness on the palm of my hands and on my feet which is now starting up my leg - this seems to last almost up until the next infusion. My regular doc does not know what would cause this and has given me gabopentin to treat the effects. I will see the onc on April 2 and will see if he thinks we can take a break or if we need to press on - I am scared that these symptoms are neuropathy and if I keep taking it that it will get worse - however by stopping the Herceptin I also am scared that the liver mets will take hold again. So not sure what to do. Any advice or input would be appreciated. Thanks girls!
Hugs to all

[lizely]

I did TC x4 and H x12, finishing up this past February. My side effects were minimal - a small amount of neuropathy from the TC.

However, I have noticed that my blood pressure has risen considerably this past year and am concerned. It was always low and now it is high. Could this be due to Herceptin? (I am discounting other factors aside from a year of aging, as my diet has remained the same and I am a regular exerciser).

Since MUGA scans register your heart efficiency, if your heart can decrease efficiency from Herceptin, how does that affect your blood pressure? Does it affect both your diastolic and systolic levels? Will your heart efficiency return?

Need some help here.

[NEDenise]

Lizely,
I have experienced a similar change in blood pressure. I used to hover around 90/60...but since beginning treatment, have been in the 125/80 range. While it's not high for the average person, it's a BIG change for me. The cardiologist put me on meds, and my pressure is down where it belongs. Taking the "strain" off my heart has also made my EF start to rise again.

I'm not sure...but my docs seemed to think this was not an unusual turn of events. Is it possible for you to consult with a cardiologist?

Hope this helps!
Denise

[oregon]

Hi everyone!

I just completed Herceptin last week . . . hurray! And I'm beginning to feel some relief already. So I encourage anyone that is still on this drug that is does get better!

I'm 53, was postmenopausal and had great health at the time of diagnosis 12/21/10. Stage 1B, I had neoadjuvant therapy (abraxene, carboplatin, and herceptin) from 2/3/11-5/31/11. Bilateral in June '11 (no node involvement) and in July '11 continued on Herceptin. My oncologist said the clinical trials all involved adjuvant therapy, so he wanted me on the drug 52 weeks "post" surgery. I did last 9 months post surgery plus the 3.5 months prior to surgery.

In July, my Herceptin treatments started out every three weeks and in November '11, I moved to weekly treatments due to side effects. I experienced increased neuropathy in my feet (numbness), much more so than during chemo, and this continued until I completed the herceptin. I was tripping, had very little small muscle control in my feet and I'm already seeing improvement in just one week off the drug! I have weakness in my legs and joints. Getting to/from a sitting to standing position, I felt like I was 90. Thin nails, and at the tops of my fingers around the nail - I had severe cracking. Any little cut on my hand(s) it seemed at though the pain was amplified. When I think of this along with the increased neuropathy, I believe this drug somehow affects the nerves.

Thank you for collecting this information.

[Alyce]

Hi again-
I am wondering about Femara. I never had high cholesterol until post radiation, post, Herceptin,post chemo. I am in the 4th year of Femara and haven't run into anyone to ask about whether any joint pain has disappeared after the 5 year mark, stopping Femara. My Dr. doesn't want me to take any statins so I am hoping the cholesterol will also go down. I ended up writing a cookbook as a result of drastically changing our diet to healthy wondeful organic food. Can't blame the diet for the higher cholesterol.

[tryingtohanginthere]

I am getting ready to begin Herceptin and was curious about the side effects. I just finished 6 rounds of TCH, and will continue with Herceptin every 3 weeks till December. I am worried now about all the side effects.

[laurab]

I had my last Herceptin infusion in February 2012. I was never on any type of chemo.
My only side effects were the finger nail splitting and breaking and an occasional drippy nose. I have had 4 heart tests and all have been fine. My blood pressure has gone up , but I attributed that to the stress of it all. I wouldn't worry about Herceptin side effects.
Most people have not reported any severe side effects.

[potra]

62yrs old, menopausia at 54, dx IDC april2011, lumpectomy July2011, er-/pr-, Her2+ sentinal nodes-, 8 cycles TAC/3WEEKS,
Herceptin/weekly. Dx bone mets Oct2011 and added Zometa to tx. After terminating chemo por febrile neutropenia, continued with herceptin +Zometa/3weeks up to now. New symptoms since finishing chemo-hot flashes, slow hair growth. Runny nose, crusty eyes, blurred vision in the afternoon, fatigue. I can't evaluate respiratory effects because I have COPD but I'm much more prone to bronchitis episodes since starting treatment-4 episodes in 10 months, 2 of them since off chemo and with white cells back to normal. Bloated stomach-I call it Herceptin tummy.

[Kroesen]

I have almost completed my first year of "Survival". Next week marks a year that I have had a mastectomy. For you ladies/gentlemen that are just starting the process, know that you will get through this. It will be day by day, step by step, minute by minute, and sometimes second by second, but you will survive.

I thought I was allergic to the Herceptin. My whole body was one big rash and was very painful. I went to a allergist and they put me on all kinds of allergy meds and a steroid. It turns out that I was allergic to the Heparin that they put in my port. If you have a rash, write down everything that you do. I'm told it is very rare to be allergic to Heparin, but I'm glad to have figured it out. I was determined to keep taking Herceptin.

So, as for side effects of Herceptin, I would say sore joints. This is nothing in comparison to everything else.

Good luck to all of you who are starting the process. You WILL get through this and be a stronger person when you're finished with treatments.

God is good-ALL the time.

[pmm10414]

Hot flashes were terrible. Within 10 minutes of starting they would start.

[Andrea Barnett Budin]

Itchy red rashy full of fire burning on my upper outer arms. Needs urgent immediate response!

Ice, water as hot as I can take it, camphor gel, Benedryl spray and Benedryl (2) nightly -- helps.

After 1 yr the red rash remains but the pain is gone.

[rhondalea]

Andi,

You might want to give calendula a whirl. IMO, it's a miracle.

Hyland's makes an ointment that's pretty disgusting (petroleum, lanolin and calendula) as well as a spray (glycerin, water and calendula). California Baby makes a cream that smells lovely, but is probably not so effective as the first two. I have not used Weleda, but it gets high marks from many.

During radiation, I used California Baby in the day time (so people wouldn't run from me holding their noses). At night, I slathered on the ointment (because my husband is mightily tolerant--well, either that or he's lost his sense of smell entirely). End result? No radiation dermatitis for me. Now, when I burn myself or come in contact with something itch-inducing or have any skin irritation at all, I apply the spray immediately. Bye-bye burn, so long itch, fare-thee-well red spots.

Oh, and it also works for sunburn.

[Andrea Barnett Budin]

Rhondalea, Hi.

I googled California Baby. It's for diaper rash. Dry skin.

What I had was rashy looking, not dry. On fire, burning and urgently knee-dropping itching.

I am glad this worked for you. Thrilled in fact. I thought radiologists gave out special creams for those special burns to the skin. Do they itch too?

I was lucky. Only mastectomy. No breast tissue, no radiation is what I was told. 2 lymph nodes affected (out of 21). 3 yrs later the bc that had a ticket to anywhere in my body landed in my liver. Just saying...

Andi

[kstrahm]

Herceptin has become a side effect nightmare for me after almost 7 years on it. I started it in April 2006 for stage IV with liver mets. It was great at first - just a headache on infusion day and tired that day over the years it has progressed into full blown neuropathy with burning, tingling, numbness in hands, feet, legs, arm, tongue and throat, frequently dropping things and losing my balance as well. It also causes me to be dizzy and have pressure in my head as well as extremely exhausting me. I also have what the doc calls flu like symptoms which is severe pain the day off and day after the treatment in my upper back and neck. Here recently I have almost felt like I was dying the evening of taking it I was so out of it and felt so like nothing I could even explain. The verdict of this since I am NED now and have been for 6 years we are going to stop Herceptin. It is so scary and is a gamble but my body is giving me no other option. I hope to be NED for a long time because I am not looking forward to going back on it anytime soon. I certainly think the Herceptin side effects are cumulative.

[frankp]

kstrahm--you might check your serum HER2. A very recent Danish article pretty much concludes that chances of progressing are slim if your serum HER2 is in the normal range. You can read more at www.hertestonline.com (http://www.hertestonline.com), the March blog.

[rondo]

I'm sorry you are having such severe symptoms but glad to hear about your NED status. I
Definitely experienced increasing fatigue from the Herceptin during the year I was on it as well as some other milder symptoms. It is interesting that you mention dizinness and loss of balance. I have been having the same issue and am in the midst of vestibular rehab therapy now since my symptoms, which were mild for several years, have progressed over the last 6 months. The onc and ENT that I have seenthink it's caused by the carboplatin but now I am wondering about the herceptin since from what I have read, carboplatin usually only causes hearing loss(which I don't have.) They are having some trouble getting my symptoms under control so I am going to another specialist soon. No one seems to think its a brain met. Has anyone else that had TCH (or not) had this issue?

[conomyself]

I've had:

2 x TCH
4 x TPH
2 x PH
2 x H
1 X PH

so far (P = Perjeta, H=Herceptin, C=Carboplatin, T=Taxotere).

My last infusion of Taxotere was 11/27/12.

Overall the herceptin has been fine for me.

I have minor issues, but I don't know if they are due to Herceptin or leftover from Taxotere:

Knees. When trying to get up from a crouching position it is difficult and painful.
Stiffness. I am quite stiff after sitting.
Nostrils. They are scabby and painful.
Diarrhea. On and off, not chronic. Never know what I'm going to get.
Fluid retention. It has improved, but my face still looks puffy to me.
Energy level. I can do about 50% of what I used to do before diagnosis.

Rachael

[Andrea Barnett Budin]

I found Taxotere side effects to be the worst. Even off Taxotere for years, I would occasionally get serious and deep muscle pain in arms and legs. My doc said I'm not the only patient reporting this yrs after.

Herceptin was tolerated fairly well. Low energy. B-12 sublingual. Phyto Formula for chronic fatigue recommended by nut onc (supplement guy).

Ayr gel in a tube for nose. I used to have to blow my nose for the first 1/2 hr I got up in the morning. And it was bloody.

Poopies/bathroom drama really bad. After all is said and done, I have created a FOOD TRIGGER list that I must stick by religiously. After 5 gastro guys and every med they could throw at me, 1 Wobenzyme 1/2 hr before meals plus LIQUID IMODIUM have proven to be fantastic. My chronic IBS since the first chemo is somewhat under control. (KY jelly for diaper rash works wonders when you've spent hrs on the toilette...)

I was on Herceptin for 10 yrs. Off for nearly 5!!!!!

So sorry to hear of those battling the side effects of whatever.

From the Taxotere I had severe neuropathy, fingers, soles of feet, toes. Burning pain. Dropping things. No headache. No dizziness. Well from the Roxicet yes.

My fav onc told me at the 5 yr mark on Herceptin, I could stop. I stayed on for another 5, cause I wasn't going to mess w/NED. It is very scary going off, but I celebrate each year, have the date of last infusion marked on my yearly calendar. It is my THIS IS MY NOW Day! Freedom. No more chemo rooms.

Still do the supplement thing twice daily (many many). Meditate. Talk to my body. HEALTHY AND WELL! It hears everything you think, say and whisper. And it follows your instructions! Honestly. State your Intent and your Expectation explicitly.

KNOW that the Universe is also listening to your thoughts and intentions. And it responds -- in kind. So I stay far from fear and worry, uncertainty and all negativity.

I focus on The Now. Not yesterday. Though it was all life-altering. I look to tomorrow with as much love as I can muster. I allow myself to be a vessel for Universal Love. Compassion. Kindness. Generosity of Spirit. Forgiveness. And GRATITUDE. Every day, several times a day, I look up and I say, THANK YOU FOR MY LIFE.

I visualize myself far far into the future. I breathe. In. And hold. And out. Slowly. Releasing all that is toxic on the exhalation.

This is the very best advice I can offer. I pray you all find joy and serenity, wellness and health.

With Love and Light,

These are my best suggestions.

Andi

[norkdo]

I finished my herceptin in August. Side effects: none. (slept heavily afterwards tho.)

[daughter_1]

My mother was diagnosed with Pulmonary toxicity (interstitial pneumonitis) with additional infections (K. Pneumonae), towards the end of her 12 week Herceptin+Taxol cyle. After spending a considerable time in the hospital (4liter oxygen, Saturation at 90, fever) she's now recovering, but our oncos are uncertain whether this is a case of pulmonary toxicity caused by Herceptin or by Taxol!!! She was due for a year long treatment on Herceptin, but her oncos have suggested moving to Trykerb at this point, given that there is no way of knowing and they do not want to risk another episode of pulmonary toxicity.

Also, post her 4th taxol+herceptin cycle, she started developing unexplained tachychardia, which till date hasnt been explained. The oncos once again think it could be herceptin, but state that there is no way of knowing!!

Any inputs on the above situation would be great!

Questions in our mind right now - Is Trykerb as good as Herceptin? Was the episode really caused by Herceptin?? Is it a risk to move from Herceptin to Trykerb given that she is node+ve.




Summary:
Dx: Stage 2b, 2 lymph nodes, Her2+ve, ER-ve, PR-ve
MRM: Sept 21st 2012, 4 AC cycles started on Oct 10th after which 12 Taxol+Herceptin weekly cycles were started in Jan.

[Andrea Barnett Budin]

Sorry dear Daughter to hear of your mom's situation.

FYI -- for what it's worth -- I developed a pleural effusion (fluid around the lungs) and a peri-cardial effusion (fluid around the heart) when on Taxotere (a cousin of Taxol).

Once I went off Taxotere the effusions dissipated. I remained on Herceptin for 10 yrs.

Another opinion or 2 would be wise. I understand their concern of course.

I wish your mom better and better health. She is blessed to have you in her corner. Sent with love...

[daughter_1]

Thanks for the wishes and love Andrea!

My mum also had peri-cardial effusions through her Taxol+Herceptin cycle and yes, her effusions have disappeared now. Unfortunately, the doctors haven't been able to establish whether it was because of Herceptin or Taxol!

At this point, we just hope Trykerb does the trick. Yes, we will be taking 2 -3 opinions about this as well.

[pibikay]

Hema is on a 3wwekly course after a break.This is her 3rd cycle.After the first 2 infusions diaorreah was there.But the main side effect is extreme tiredness

[linn65]

Feet, knees, hips, and hand pain. It moves around in my body they don't usually all ache at once. Fatigue. I had cold sore inside of nose. Emotional. At times lack of concentration/focus and Sometimes hands ache and are tingly. Night sweats and chilling. All these start several days after I receive herceptin. Then I almost forget I had any side effects because I feel fine for several days before then it is time for another one.

It will be interesting to see how much the tamox plays into the side effects.

[YNieves]

I am on Herceptin and Tykerb. I first took Herceptin I. 2009. I had an an allergic reaction 15 minutes into the infusion. My chest started to tighten and my breathing got increasingly labored. My BP sky rocketed. I had to go to the ER for prednisone inhalation treatment. Luckily that cleared it up, the net step would have been an epi needle! I went o an allergist and was desensitized toHerceptin so I could accept it. I took it for 1 year. 3 months after I was off my cancer returned to chest wall. ( personally I think it was always there.). I then went on Xeloda and Tykerb (1250mg. 5 pills). Did that for for twelve weeks then stayed in Tykerb only. Pet scan should cancer cells in axilla lymph node. Went back on Herceptin in 2011 along with Tykerb. I reduced the Tykerb to 4 pills about a year ago because of the increasing neuropathy in hands and feet. I have experienced the crusty blood nose in the mornings, numbness in toes and middle of feet, painful achy knees, photo sensitivity and rash like swelling around ankles. Never goes away. I was just given a 10 day break from the Tykerb but have decided to get off it. Onc. Wanted me to reduce to three pills daily but admitted he has no one on 3 pills and does not know if it will be effective. I feel that the Herceptin on its own is good enough. I have had clear pets cans for over a year and a half. My feet are so painful and the numbness is increasing. My hands started to get shooting pains and electrical shocks? I am Her 2 ++ and ER and PR neg. Had a mastectomy in 2009 and then cancer returned to chest wall and lymphatic system after chemos, Herceptin etc. I am told I will have to stay on Herceptin for life. I get infusions every three weeks. My faith is strong. God will heal me!

[Nancy L]

I never had a reaction to Herceptin but I did to Tykerb. Dr. Slamon was directing my treatment at that time. I broke out in hives all over my body after taking 1000 mg (4 pills) Tykerb for four days. Dr. Slamon immediately dropped the dosage to 750 mg (3 pills) Tykerb at bedtime and Herceptin every three weeks. I was on this from 2/2009-6/2012 until the cancer came back a second time. Now I am on Kadcyla which is a very difficult drug in my opinion.

[KDR]

Nancy, wondering...did you get the information needed in the email?
Karen

[Nancy L]

Thanks Karen--just sent you a private message.

[KDR]

Ah, yes, I see we are on the same page. When the body speaks, we must listen.

Hope you are well, Nancy.

Karen

[Raz]

I was Stage 1 ER+PR+ HER+++,Lumpectomy left, 6 rounds of Chemo and 4 weeks daily rads. Still on Herceptin through November 2013 every three weeks.
I have been mentioning my joint pain but onc says not due to Herceptin.
I have to disagree. I hurt every morning and I walk really stiff. It takes about 2 hours to feel normal.
The side effects are very real. My onc thinks it might still be residual from Taxotere.
Either way it sucks.

[Raz]

I was Stage 1 ER+PR+ HER+++,Lumpectomy left, 6 rounds of Chemo and 4 weeks daily rads. Still on Herceptin through November 2013 every three weeks.
I have been mentioning my joint pain but onc says not due to Herceptin.
I have to disagree. I hurt every morning and I walk really stiff. It takes about 2 hours to feel normal.
The side effects are very real. My onc thinks it might still be residual from Taxotere.
Either way it sucks.
However not to end on a whiney note.
Exercise does help.

[thickdescription]

Had Herceptin only for two rounds before beginning Taxotere/Carboplatin.

Herceptin only side effects:
runny nose from the start. Occasionally very dry.
heart was working harder - found it difficult to walk uphill sometimes. (53 yrs old: walk 2 miles to work and run 30 mins daily)

With 3rd cycle of Herceptin, started Taxotere and Carboplatin.

Heart function continued to suffer. At 3 month check up, LVEF had declined from baseline of 67 to 50.

Started betablockers and heart function has improved considerably. Not sure what the next heart test will show.

[Lani]

RAZm sometimes side effects happen long after a treatment. Then it is hard to attribute it to something you are no longer on.

I am not aware if you were premenopausal prior to the chemo, but one of its effects is to put many into early menopause. Lack of estrogen seems to be related to joint complaints ( that is why they think so many on AIs have significant joint complaints), so it is possible your complaints are from late effets of the chemo (unless you post back that you have been postmenopausal for years)

Have you started on AIs yet?

[DogLover]

Andrea,
I love your statement: "EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE."
Just what I needed to read today.

[norkdo]

herceptin side effects: i had none. i was on it for ten months which i was told was as effective, here in canada, as a year's worth, "studies said"

[Rolepaul]

Herceptin side effects: IV and Intrathecal Herceptin for Nina has resulted in disease remission. No other obvious side effects. No heart issues (MUGA is great, but Herceptin attacked my mother's heart and the disease progressed to brain, bones, and lungs before she passed). I will never give up the fight against this tyrant. Godzilla will not win this time around. If you remember V, a biological engineer ended the destruction. I intend to be that person.

[RedHen]

I've just started Herceptin alone. I had five TCH treatments, but onc stopped them due to worsening neuropathy in hands and feet. The first treatment, three days ago, was uneventful. None of the usual nightmare side effects of taxotere and carboplatin. I had a disturbing episode Thursday, after the treatment on Wednesday, which has been explained in this thread. My husband was driving me to a doctor's appt, and I could not for the life of me get a sentence straight. I gave up after several frustrating tries. As someone else has said, I knew what I wanted to say, but I couldn't get the words in the right order. I was afraid I was having a stroke, but nothing else seemed amiss, so I went on to my appointment and did not experience any other episodes. So far so good. I've heard several people use the expression "chemo brain," so maybe this is par for the course. I don't like it, but as long as it's not permanent I can deal.

Best to all,
Lynne

[lucky4x]

Hi there!
I haven't been here in so long, but I thought I should post this as I am a Herceptin Life-timer. I have been on Herceptin since Sept, 2005. Every 3 weeks, via Port, without fail. I have Syma (Canada) or Mugga scans every 3 months and see my onc. every 3 months. I am lucky that the mets to both lungs that were discovered in 2005 are completely gone and I have had complete response to Herceptin. Side-effects? Nothing I would ever complain about but since you asked... my nails are crap, therefore I get bio-gels once a month (but its $$!) and sinus probs with sores in nose but like I said nothing to complain about. My heart is fine, I dragon-boat race on weekends and practice 3x a week with a whole boat (22 women) of breast cancer survivors. I am lucky to be able to have herceptin as I am a 4 time survivor, since 2000. When I asked for Herceptin in 2002, I was not able to have it- I didn't have mets. Boy am I glad that rule has changed and now it is given as part of a regiment for Her2pos patients. Memory loss- not from Herceptin- but def. from chemo. Always happy to speak to anyone about my story, about Herceptin especially since it worked so well for me. By the way, I was given the choice to go off it .... I said "NO WAY! It's the only thing keeping me alive"! :)

[Nurse4u2day]

Red Hen my daughter no longer calls it Chemo Brain she renamed it "Broken Brain" lol
I will say since my chemo has ended my broken brain is healing lol. But I would still say mention it to your MD

[Nurse4u2day]

I have been on herceptin for 3 months with taxol and just had first herceptin alone infusion Friday thus far worse s/e running nose.

[Winkler3]

I have had 3 dx - 2000, 2003, 2007 - same breast. First dx was Stage II ER-, then ER+. After 2003 chemo, had Herceptin for one year. Since 2007 recurrence and chemo, I have been receiving Herceptin every four weeks via a port (7 1/2 years!). My hair is much thinner and little body for styling. I have to keep my nails short, always cracking and peeling. Nose is dry, progressively more tired. For the first time, my ejection fraction on ECHO was a little below average (will repeat in July). All that said, I view each day as a gift. I am able to lead a relatively normal life, play golf, garden, enjoy my grandkids, etc.

[DeBob]

Have been experiencing shortness of breath. Also been getting hot flashes that come with a prickling feeling all over my skin....as if things are sticking me all over. Very uncomfortable. As usual, my MO says this is not a se of herceptin, but I've already been through menopause and had hot flashes with that. But never had this awful prickly feeling before I went on herceptin.

[Cif]

Ditto pricking feeling, cold shower helps

Left mast nov 2013, chemo TCH started dec 2013 thru April 2014 21 day cycle. chemo was Tch every 21 days tI'll April 2014, now with only herceptin every 21 days in the current mix no other meds. Before first chemo menstrals were clock perfect but last one went with hair 20 days After first chemo. Left idc stage 2 ER+ her2+++ one node pos.

Herceptin issues started after last chemo, which means some steroid or co-chemo medicine may be solution to solve herceptin issues. My next herceptin is Monday, I'll probably ask to skip it and ask for a break or I fear one more treatment and I'll be perm handicapped and bed riden or wheel chair and lose the two working fingers left (ring finger both hands) all the others got trigger finger, are stuck in bent configuration and forcing them straight is painful and may break them, ditto with toes. The fingers started two treatments ago, the feet, knees, toes, elbow started with the first solo herceptin, ditto with falling, stumbling, no longer being able to do math, bills, writing, and speaking now is stuttering and wrong words or just like a stroke. I was never sick before starting chemo, and rarely needed medical intervention except from extreme sport mishap which was rare. Now becoming a regular Emergency room visits from falling, hands dropping or slipping with the knife, or failing to hold something and it falling or hitting head, eye, etc. Fatigue is overwhelming but unable to sleep. Strangely I'll have one good day in between treatments where I can function normally and run non-stop and do weeks worth of chore catchup but I cannot turn it off, I just go go and then crash on couch for a few days. I stopped exercising and yoga, seemed the more I tried to defy and fight back the worse joint,tendon, etc issues got. Read a herceptin post where someone said to veg while on herceptin to avoid joint pain getting worse, and it that helped. Now tons of sweats, my body temp and blood pressure is all over the board, and if sun heat hits skin it feels like I rolled in pink insulation all over body. Neuropathy hit privates in addition to feet, hands. The doctor says to ride out until the scheduled completion date of dec 2014. But no confidence in med staff since they also sAid that dry eyes, and other typical chemo symptoms where not asssaociated with chemo and I should be working full-time. Found a survivors group After my last chemo and found out my issues were typical. A nurse in the survivor group suggested I ask my GP or cardiologist for clonidine HCL for the sever hot flushes that started Fter third chemo that the oncologist sAid was unrelated to chemo, after months of hell after one tiny pill it solved them, maybe needing one every other month. Oxycocone is the only relief I get from herceptin neuropathy, left over from mastectomy. I take a half one one or twice a week just to catch a break to keep going. Turning my wrist feels like electrocution. Having to pee at night every 30 minutes and having to crawl the first few yards until Tentons in ankle can move and handle weight. Bloody and running nose, loss of appetite first two weeks after a treatment. I eat on a schedule but always lose 10 pounds first four days of treatment, then gain it back by the time of next treatment. I lose time and confused, resulting in near,y burning house down at least once a month with the stove. I'll go into the kitchen to feed the dog at six, and the next thing half hour to four hours gone by and still in same spot in kitchen. When I walk and feeling well and stronge I'll ver off to the right and walk with a cane now to stab the ground with to stop the ver. At other times my legs just fold And just before hitting the ground recover. I'm sure the neighbors think I'm a drunk walking the streets. There are more herceptin issues, and yes I did report them to herceptin folks, Which was like trying to get though a brick wall, pretty sure they don't care. No clue how to contact FDA yet. So now trying to determine quality or quantity of life, leaning toward quality and stopping herceptin. Next post I'll use a real keyboard vs online text one fo improve quality.

[Cif]

Regarding prior post ... I lost four pounds to get to 106 and negotiated a dose change based on current weight versus prior 110 weight and no longer need oxy or have bloody nose. I am able to get yoga back into play (classical stretch on Maryland Public TV) but feel years from doing any Jillian yoga. My hands still cannot use door knobs and such. Total loss of thumbs as of this post, but toes got relief. So feel like 98 rather than 120, that is welcomed improvement. GP put a wrist and forearm split on right arm and pain significantly was relieved at night. Got my eye on on my trail and speed bikes, soon hopefully I'll have the balance and hands to pedal the trails again.

[BonnieR]

Cif, your side effects sound in the extreme! I hope you are insisting on better management, dosage regulation, treatment or whatever is indicated to offer relief. I had many of the se you mention but no where near the debilitating degree
I hope you get resolution
Keep the faith

[Cif]

You should be asleep. But your posts help so many including myself. Like me, a lot of folks read and not post, so imagine how many more you help than u r aware of. Thank you. Now, did I mention herceptin and insomnia ... Basically every side affect ha ha. Regarding better management, no clue how to do that since the docs will not read this site and believe everyone can work fulltime though chemo and besides hair loss only other symptoms are during injection and none afterward, and herceptin has no side affects. Basically they say i'm a wimp i try to explain i'v never gone to docs beforennthis and prefer not to now, and told them i never could do drugs because things like nyquil would kick my butt even in tiny doses. Except for asprin I'm only quilty of being hypersensitive to dosing, but i'm size of a flea and should be dosed based on sensitivity, not based on weight with street cloths and silicone. Ha, i gained weight day i got the new girls, can't believe they don't subtract that.

My guess is they plug in info into hospital program and robotically prescribe what computer burps out without factoring experience, and patient history and metabolism, etc. I got the dose change because I went from timid to a foot stomp raised public voice that silicone and a belt buckle should not be included to determine dose. Sort of funny because i stuttered the burst and most around the area knew me before that herceptin side affect started and first time in my life I was going to publicly strip to prove what my weight was and as I started to is when they agreed. I guess the quite mouse roared. Seriously though, a 130 pound person can probably have the mass to metabolize a 10-30 unit additional dosage than a 106 pound lean flea could. Common sense should be used, if person is becoming disabled and unable to walk, drive, etc then decrease the dose; instead it was recommended to invest in wheel chair. Yes, I cried because Coming from a doctor I interpret that to mean that is my destiny. I was told six rounds of chemo then I'd resume activity lifestyle without any change. If I knew otherwise I would have done labor intensive home repairs and a few bucket list things before starting the treatments and started a month later.
Hugs, and thank you

[BonnieR]

A few quotes came to mind as I read your post
"Speak up even if your voice shakes"
"If you're going through Hell, keep going"
And of course " keep the faith"!
Does your treatment center have any sort of patient advocate or oncology social worker who might work with you?
Mine had a pharmacist who prepared the infusions and was available Perhaps you could have a meeting with them to discuss side effects
As you have discovered, the squeaky wheel gets the attention
Thanks for the kind words. I'm just passing on what was given to me here
KTF

[RedHen]

I don't know if it's Herceptin or not, but neuropathy, particularly in my right hand is worse. Of course, I have lymphedema in that arm, so that could be a contributing factor. Some of the symptoms mentioned - hot flashes, insomnia etc - were brought on in my case by the addition of Arimidex. I take it orally every day, and my new onc says I'll take it for years - assuming I live that long!

I have moved to E. Tennessee - did I already say that? All new doctors. So far I'm pleased for the most part, but my blood count has gone down and I"m getting an iron infusion with my next Herceptin. The nurse says it won't be what I've been taking for years because the insurance, which in my case is Medicare, will no longer pay for it unless the patient has kidney problems. I'm a bit nervous about starting a new drug, especially since the irons have a reputation of causing problems. I was taking Feraheme with no problems at all; I hate to give it up. If I can't take the new one, I wonder what I'll do.

One of my new doctors ordered an ultra sound of my thyroid and some blood work because of nodules that concerned him. I haven't heard anything, so I guess all was well.

I hope all of you are doing well and looking forward to fall. This will be my first "real" fall with changing leaves. South Louisiana, where I'm from, doesn't have much in the way of fall. It's usually just as hot as summer. But I miss it...

[Cif]

BonnieR, had treatment yesterday and addressed issues. Was told to contact Hopkins, will try that. Got dosed again based on actual weight, yay - hope that will continue to help improve things. Doc also said she would be game to try weekly vs 21 days since posts on this site said folks got symptom relief trying that. Got three good kicks from heart that stopped me in tracks, definitely got my attention, will be getting stress test on Wed. Amazing how in short few months can go from being an ox to having so many issues. Going to ask Hopkins about CP2, so holler if you know I should steer clear.

[Bellaokc]

Herceptin side effects: Hot flashes, dizziness, fatigue, muscle and joint pain, runny nose, bloody nose, thin hair, and forgetfulness. I was 41 when I started on it, and was in GREAT health before the cancer, so I know it is not "age" that caused the side effects.

[Andrea Barnett Budin]

Hi Bella.

Please read my signature so you can see that a 4th stage, HER2 positive, ER-/PR- lady can survive long into the future!

The symptoms you mention are what I experienced from Taxotere.

I spent 10 yrs on Herceptin without those symptoms, after the 8-9 mnths of Taxoterror I took.

However the T did kill the cancer. So we have a love/hate relationship.

I had a highly aggressive form of bc. Taxotere was the strongest weapon they had in their arsenal, my onc told me. It was the harder road, but I believe the right one.

I pray you find much healing.

Please check out my WHY I TAKE SUPPLEMENTS thread, and actually any and all of my thread.

Hugs,
Andi

Andrea Barnett Budin

[Cif]

I cannot turn bold off, sorry. Being dosed on actual weight instead of waiting till weight dropped more than 10% from dosing calculated weight has made a huge difference such as the bloody nose and hole starting to form in the septum is now healing. I logged into this site by myself (okay, I had to follow hubby's instructions but still huge improvement for somebody that used to design and code huge world wide computer systems). Reading better, and still learning math again. Balance may take a long time as well as speech and finding correct words. Seems I'm also a whimp with tramadol, gabapentin and many others - get more confused and hallucinate with some too. I guess being a 100 pound pixy has disadvantages when it comes to meds. I lost two inches in height in seven months, so I guess soon I can try out for the remake of OZ. Although not pleased with the mental deficit, I got many replies on how to adapt. I set many timers when the oven/stove/etc is in use, and laughable when they all go off but necessary to keep tenants and house safe. The app, Calendars 5, has been a huge help.

Blessed with a smart 17 year old dog that learned to nudge me when I zone out, actually when the stove would start to smoke ... still ... smart dog. I still lose time and get confused. I found that speech improves when I take pain killers for all the concrete tendons/muscles/joints/etc. I figure calming the pain waves may help the brain function better - seems that way. I'm told to give it a couple of years before feeling the pain and/or disabilities are permanent. Based on feedback, I truly believe things will resume to me being a strong Ox again and being able to get cognative abilities back.

I did find out the GP2 vaccine did complete phase I and II with all recepients with Her2+++ not having recurrence - YAY huge break through. The bummer part is that phase III has not received funding, I believe Antigen has the ID. If ANYONE can get me access to the GP2 vaccine, please let me know. My last Herceptin is Dec 1 and to be part of the trail or for the vaccine to work you have to have just finished the one year of Herceptin.

I will work on future posts being more concise with specific hints for others. Although against the rules, I am taking supplements, but none that are known to conflict with Herceptin and only those documented to work and complement Herceptin such as Q10 with an omega 3 supplement such as MegaRed, Glucosamine (without controtin, I feel this gave great relief to joints), and there are two others - gads I miss the steel trap memory. I also got permission to take B12 and D. Needles with steroids directly into joints stopped the trigger fingers and toes, but let me tell you ... the first 24 hours are a bear ... just immobilize the joint and take something to sleep/pain for 12 hours, then expect the trigger to actually get scary worse before the shot makes things better, like 4 weeks. I went from not being able to pull up underwear without dislocating fingers to barely recalling how awful a problem things got, fingers and toes now normal again. Nobody told me I was suppose to use a dialator during chemo and Herceptin, so I had to have surgery to make a certain part usable again - I have no idea why they don't tell folks these easy preventive tips before starting chemo regardless how private and TMI it may be. Honestly, I was told six chemos would be easy peazy and back to normal physical and mental sports/hobbies/work after the sixth. I was just informed that nobody with lympth nodes removed is suppose to shovel snow, lift hay bails or anything over 5 pounds, and to never never use the forearm to hold shopping bags. I'm just wondering what are all the other things I don't know about, and is there something to read that lists these gotchas? Why is each patient having to learn all this (e.g., recreating the wheel)? I have to resume taking care of handicapped and elderly family, so if you know if I ignore that advice the risk I'm taking let me know.

For folks out there in tears and scared that the symptoms will land you in a wheel chair or bed ridden, it does start to get better, but pretty scary ride, I understand. Just don't understand how the medical staff can be so ignorant there are folks having issues and issues are real and valid. Oh, and if you can't find your car keys look in the freezer - seems to be the first place I check now. (and NO, I do not drive often or under the influence, but when I do drive I only do so without any meds and only super good days. I will not risk the lives of others to drive).

No words can articulate the appreciation and thanks I have for those that shared on this post, it is very scary to be told nobody else has issues and to buy a wheel chair. Folks like you posted during a critical time to help provide faith in recovery and healing. THANK YOU. I will post as things improve so others can get a feel for changes and timelines. Hopefully I'll also learn to be more precise and concise posting. I'm thrilled I can type with more than two pinky fingers again.

[Dakini52]

I have been on Herceptin for almost 5 years now and continue to be NED so far. I began receiving Herceptin after a local recurrence in early 2010. I receive the treatment every 3 weeks and will continue indefinitely, potentially adding Perjeta as another way to block any recurrence. The symptoms I have are a runny nose, weakened fingernails, some joint pain. Each time I receive the infusion I do have mild flu-like symptoms, however by the next day they pass. Compared to other chemotherapy drugs I have taken it's pretty darn easy.

[Dakini52]

I forgot to mention that I also have continuing issues with my eyes. I seem to tear constantly and my eyes are always somewhat irritated. Didn't have this before the Herceptin so am thinking it is probably a side effect.

[Cif]

oh yes, the itchy eyes and red rims. Today so thrilled, toe nails finally grew to meet the end of the toes, took from April till Dec. The finger nails are like rice paper still, peel, bend, flake off. Hair starting to get real thin on top, that is a bit scary after just getting it an inch long and super thick. My Dec 1 Herceptin treatment was greeted with poor liver function blood test results, but I'm confident that was from breast reconstruction the week before, read on internet bruising/damage to body tissues can make those numbers high, suspect I'm right since numbers are going back down.

Anyone with pull to get me into GP2 trial please contact me. Thank you. Wishing all a New Year of improved health and happiness.

[Rolepaul]

What is GP2 and who is the company that is making the material? I do not know what I can do, but it cannot hurt to let me try.

[Cif]

Not forum savvy yet, but a link that seemed to be key to all you wanted to know about GP2
http://her2support.org/vbulletin/showthread.php?t=62307

NCT00524277
https://clinicaltrials.gov/ct2/show/NCT00524277


I also got this email too:
Hi!

I just signed the petition "Director Mark Scher, Ph.D: Save lives! End the lawsuit so preparations for a Phase III Clinical Trial of the GP2 Breast Cancer Vaccine can begin with an IND." on Change.org.

It's important. Will you sign it too? Here's the link:

http://www.change.org/p/director-mark-scher-ph-d-save-lives-end-the-lawsuit-so-preparations-for-a-phase-iii-clinical-trial-of-the-gp2-breast-cancer-vaccine-can-begin-with-an-ind?recruiter=200401321&utm_campaign=signature_receipt&utm_medium=email&utm_source=share_petition (http://www.change.org/p/director-mark-scher-ph-d-save-lives-end-the-lawsuit-so-preparations-for-a-phase-iii-clinical-trial-of-the-gp2-breast-cancer-vaccine-can-begin-with-an-ind?recruiter=200401321&utm_campaign=signature_receipt&utm_medium=email&utm_source=share_petition)

BUT I REALIZE this post is diverting the thread from side affects. I don't know how to stop that so GP2 stuff should maybe go to that first link above. Don't you wish I could remember how to do this stuff. So sorry

[cvaughn]

I had a postmenopause BC diagnosis at age 53. So I was 3 years into menopause when I began Chemo and Herceptin in 2013. I was immediately taken off of chemo as one treatment put me in ICU for 3 days, plus a 6 day hospitalization due to near Fatal Neutropenia. Supposedly, I was within hours of death per the doc. I was kept on Herceptin for 13 months. My last dose of Herceptin triggered an allergic reaction, which also sent me to the ER for treatment and release. I had to stay on steriods for 1 month following the Herceptin reaction. Herceptin will no longer be a treatment option for me in the future. Herceptin is not the "marshmallow" drug I think they'd like it to be perceived as. My doc would never blame Herceptin on anything, until my final dose when I was swollen up and covered with hives. She constantly would say that the drugs put me into menopause early, inwhich I would remind her that I was already 3 years into menopause. Where is the research on the postmenopausal women?

During my course of treatment: itching, severe body aches, vomiting, weight gain (not a hand to mouth issue either), nails rotting off, extreme fatigue, sleep issues, high cholesterol, the inability to keep eyelashes, and anxiety to name a few. I've been off for nearly 6 months and still have thin nails, fatigue, and weight issues.

Here is my biggest complaint....the weight issues. During my treatment, I ate a healthy low fat, low sugar diet and would walk 2 miles a day. Regardless, about 6 months into my treatment I started on what seemed like an overnight 12 pound weight gain. My concerns with my doctor were met with the "menopause" theory, but I was postmenopause. I managed to lose 10 pounds post Herceptin by major caloric restrictions and exercise. To maintain this weight loss, I've had to increase my exercising and continue to restrict caloric intake. My intake is way below my recommendations for my age and height, at 1550 per the Mayo Clinic. Maintaining my current weight is a nightmare and all consuming. Due to severe orthopedic issues from a car accident and degenerative joint disease, I'm not sure how long I can maintain current exercise routine. Plus, I need to keep my weight in check due to my skeletal and joint issues. The math does not add up for weight issues. It is like my metabolism was shot to death. My cholesterol is completely wigging out and my average daily intake is less than 200 mg a day. I majored in Nutrition in college, so I am very aware of what goes in my mouth. Very befuddling. I am greatful that I had the option of this treatment, but I would love it if the oncology community would start making some admissions on this drug.

[Cif]

I was able to eat ALOT while on Herceptin, in fact since I could not sleep I ate at 2:30, 4:00, etc. to keep weight on (only part of whole ordeal that I liked). Had a month and a half off of everything between last Herceptin and tamoxifen, then once started tamoxifen I had to change cloths and sheets throughout night, and could gain 12+ pounds overnight (diet was down to 800 a day, no carbs, no cholesterol, basically not healthy just greens and sardines). I restricted fluid intake to 2 cups a day and lost the weight quickly with several sweat producing workouts a day. But even 6 oz of watermelon would result in 10 pound gain within hours. So I attribute it all to tamoxifen. I changed my tamoxife to 10mg am and 10 pm (split daily dose into 2 halves a day) and the weight over a few weeks melted off but still NO CARBS and still restrict fluid. I have been off tamoxifen for a week in prep for a surgery and I again can eat whatever I want, lost 12 pounds in a few days without trying, and SLEEP at night. The cruel part is nobody tells you that once lashes, hair, eyebrows grow back that you nearly lose them all again every three months (for how long this goes for I don't know, but top of my head and comb looks like I'm on chemo again.) Yes, folks can say that is due to the diet/fluid restrictions I had myself on to maintain weight, but it was done within nutrition guidelines and watchful eye. So between now and 2 weeks after surgery I'm going to eat out (but healthy) and enjoy this window of NORMAL. Co-survivors I asked also had the weight gain with Herceptin, but then again they didn't get the incredible near wheelchair needed pain and such from it either like I did, in fact I'm still trying to get brain, spelling, math, balance, etc. back. Weight gain, hair, nails is NOT from postmenopausal stuff ... it IS THE MEDS.

[Colleen]

I am on Herceptin and perjeta every three weeks for well over a year now and have not had a problem with weight gain. I do get the drippy nose, I call it "surfer nose", which causes scabbing on the internal edges of my nostrils from them being constantly moist. I would say that is the most annoying side effect. I was diagnosed stage IV at original dx in November 2013 so I started with six cycles of taxotere, Herceptin and perjeta. That was a nasty six cycles that resulted in a syncope with six stitches to chin and four cracked/chipped teeth. My onc wanted to add two more cycles but my body just couldn't handle anymore taxotere. Since dropping the taxotere it has been much easier, I am able to maintain a lot of my physical activities and have better energy. I did lose close to 30 lbs during the first year but am now able to maintain my weight. At times I do feel foggy and tired and I am not sure it is related to the drugs as I am experiencing elevated liver enzyme levels and bilirubin levels. My gastro dr is working with me to thoroughly investigate the cause of these levels. My onc has blown off these elevated counts as being possibly Gilbert's Syndrome. The one thing I have truly learned in the past year is that you have to be your own best advocate. The doctors we deal with as cancer patients are very specialized, they deal with only what they are trained for! Think outside the box.

[Andrea Barnett Budin]

I'm reading today's posts in this thread with great interest and heartfelt sense of sisterhood. Clearly we are each different. Our cancers (though they fall into similar categories -- mine 4th stage post menopausal age 50 in '95 w/recurrence in '98 and discovery of newly tested HER2+ gene). Everyone's body reacts different to same meds. Yes, Colleen, WE MUST BE OUR OWN ADVOCATE. Each doc, though brilliant, is a particular brand of "hammer" and sees you as a "nail". We must think outside the box.

cvaughn's symptoms might be related to chemo. I learned that many of the after effects of Taxotere, for example, lasted for years. I would say to my beloved onc (fav of 5) "I know this sounds crazy, but..." He would tell you no you are not crazy. I have patients reporting the same thing years later.

The Taxotere left me with a pleural effusion and a peri cardial effusion which was as one would expect horrific. Could barely walk or talk, literally. Whispers. Tripping. Deep pain in my limbs, burning soles of feet. Nails blackened and lifted with oozy crusty stuff exposed. Tearing constant. Eye pain (like shards of glass in them), drippy nose STILL. Nose bleeds first thing in the A.M. Ayr , btw, helped this.

Nausea, blah, blah. Absurdly weak. Sleep issues since forever. Ativan. Ambien. Natural supplements help immensely. Did prophylactic dose (1/2) of Fosamax when osteopenia spotted in bone density. Prayed to stop the deterioration. Instead -- my bones are now beautiful I am told, and I am now 70!

Then I did 10 yrs of Herceptin which was okay for me. Weight issues. Nose, eyes STILL. Nails now weak, thin, split vertically but I use a weekly hardener. Eyebrows never grew back. Lashes that were thick now sparse. Hair grew back BUT... Way thinner, frail, split ends, receding hairline.

I know pp who have horrid reactions to omeprazole (for reflux) whereas most tolerate it well.

If you know me, I still take my dozens of supplements (per Dr. Gaynor in NYC) and drink about 8-10 glasses of water a day. Chronic IBS since first chemo (Adria and CMF) which prevents me from eating a longgg scroll of lists of foods I cannot seem to tolerate -- many of which I love and exist EVERYWHERE.

But, I am healthy and well, cancer free. STABLE since '99 and genuinely grateful with every fiber of my being.

I wish you all wellness! Stay connected. We learn more from one another than anywhere else. The chemo nurses and other patients in the 10+ years in the chemo rooms in NY and Fla were a source of immense knowledge, enlightenment and benefit.

With Love and Light,
Andi

[KatherineM]

Thanks, Andi BB! You are amazing! Such an inspiration for someone who is just starting out on this hard road.

I am really against doing more chemo, at least at this point. My onc here in Asheville recommends I go on Herceptin and Perjeta, which worked well on my breast tumor, but I'm worried that the experts in Chapel Hill will want to add a chemo drug to that. Had Taxotere, Carboplatin and H&P last year, and was not a fan! Of course, if they think it will make a big difference to the outcome, I would do it. The thing I am realizing, though, is that no matter how much the docs know, there is so much they don't know about this disease, and it makes me feel better to remember that I am in control of my care, and that it's always my decision.

All of this is made more surreal by the fact that I feel healthier right now than I ever have. Doing yoga three times a week, juicing massive amounts of veggies, taking supplements, exercising, meditating... And yet, there are these tiny little nodules hanging out in my lungs.

Thank you so much to all of you on this site, for your support and your generous sharing of your experience! It makes me hopeful in a very dark time.

Cheers,

Katherine

[marion vardy]

Hi i have 4 rounds of chemo and 18 radation treatments and had 4 rounds of herception was suppose to have 18 herception 1 every 3 weeks.It had to be stop because my heart function went down from 47% to 34%.After servely months still no change in heart function .So now its stop all togather.I had heart problems before i started chemo and herception ,Now i very nerves about maybe it was a bad choice to have herception at all.My heart function is causing me to be very tired and no energery at all Since my function is so low,
What do you think of me getting herception knowing i had a lot of heart issues before breast cancer,will it every go back to normal or am i left with low function for the rest of my life

[Dakini52]

Has anyone had lung issues with Herceptin? I have been on it for over 5 1/2 years now and my heart function has remained strong, however, I am beginning to have ongoing congestion and fluid in my lungs. Anyone out there having an issue with this?

[agness]

I received 16 doses after 6 rounds of TCHP, with a seventh dose of Perjeta. I noticed:

Slowed hair growth -- even after I kept most of my hair by using cold caps

Fatigue

Irritated nose lining with dripping
Migraine symptoms after 11th dose which I had never before experienced ever. I had ocular disturbances that lasted for a good part of an hour without headache symptoms

Aching limbs -- this lasted the final three rounds until I called it quits at 16 of 18 doses. The MO had no recommendations

Bad reaction to radiation treatment - it was suggested by the nurse that patients on Herceptin seemed to have stronger reactions to treatment. I healed up pretty quickly after thankfully, minus a little fibrosis.

Weight gain - not sure the cause but I did slow down a lot during rads. I gained 10 lbs in a month and couldn't lose it even though I wasn't on hormonal therapy and my menses returned. I even had my thyroid checked which was normal. Herceptin might have contributed. Six months later I fit back into my old clothes again.

[Jkosmas]

Not sure if this thread is still being monitored but wanted to put my two cents in. I was re-diagnosed with er-/pr-/her2+ MBC in May of 2015. I did six months of weekly Taxol/Herceptin/Perjeta. Then six rounds of radiation. Now on Herceptin/Perjeta every three weeks indefinitely. All told I have been on Herceptin/Perjeta for a total of 16 months. M y side effects are below:

1) more at to get infections from hangnails, pimples etc.
2) Achy joints, feet, ankles, and legs
3) issues with runny and crusty nose
4) diarrhea for the first couple of days after infusion
5) Increase in pimples and acne (I'm 46)
6) Memory issues
7) slight depression
8) lack of sex drive (Worse than when I was on Chemo)
9) Vaginal dryness
10) Charly Horse cramps in my legs and feet on an almost daily basis
11) Slow hair re-growth

Planning on discussing these issues with my doctor this week. not sure there is much they can do. I do need to start working out. I am p0lanning on adding yoga and walking to my schedule this week to see if it helps.

[Colleen]

@jksomas I still receive herceptin and perjeta every three weeks. My nose was very runny for awhile after I stopped the taxotere. Looking back I attribute this to hair loss all over the body including the hair in your nostrils which filter air and catch moisture. It was an uncomfortable process as those hairs grew back but the drippy nose did eventually subside. My joints are achy at times but I do yoga and swim regularly to help with that. As for cramping my oncologist recommended magnesium, since I added that to my supplements I no longer have random cramping. My hair grew back slowly but it did grow back, however my eyebrows and eyelashes never came back and I am over two years out from the taxane.

[Colleen]

Oh and vaginal dryness and sex drive yup yup yup. Sex drive gone and hello vaginal dryness.

[MaineRottweilers]

Jkosmas,

Your laundry list of SEs is par for the course in this household, every. single. one.

Let me know if the yoga helps. I'm not sure I could do yoga, I can't touch my toes anymore because of my back.

[Mtngrl]

Tracy--look into chair yoga and restorative yoga. Restorative is just poses done on the floor that you hold for a long time. Nothing much seems to be happening, but it's really good.

I had all those side effects except vaginal dryness and loss of sex drive. I remember pimples and infections in my fingers from hangnails. I realize now that finally went away.

Someone told me when I get foot cramps or calf muscle cramps at night, which is when I got them most frequently, to just stand up. It works.

I used to have a constantly running nose. Sometimes I still do. I also used to get big dry clumps of mucus in my nose, and more nosebleeds. That's all better.

I also used to have diarrhea all the time. For years. By some miracle, that recently resolved. I have been having completely normal bowel movements. I cannot account for it. Before, I carried Imodium with me wherever I went and when I started to notice the rumbling in my gut I'd take one, and was usually able to head it off.

I think walking is good for just about everything.

I get achy joints off and on. Abraxane caused such severe pain after infusions that for several nights I had to take an opioid pain killer so I could sleep. Now if it's bothersome I take some Ibuprofen.

I'n 5 1/2 years older than I was when I was diagnosed (YAY!!!) so I figure some of this stuff might be happening anyway, cancer or no.

[MaineRottweilers]

Amy, great information, thank you! Getting old isn't pretty but we are oh, so grateful for the opportunity. :)

[silvergranny]

I receive a Herceptin treatment every three weeks for a total of 18 treatments. I started Herceptin on Feb. 11, 2016 with four cycles of chemotherapy along with Docetaxel and Carboplaten. Also received 20 radiation treatments after the chemo. I refused to take the Arimidex as Lupron (from the same drug family) destroyed my immune system in my mid forties and I still suffer from the damage. My Herceptin side effects are a very runny nose, increased muscle/joint pain, hives, blurry eyes, bladder incontinence, hair not growing back on the top of my head, exhaustion, sleep disturbances, bloating in stomach. Thankfully my heart function is good and I get an echo cardiogram every three months.

[Carol Ann]

I had the runny nose, muscle twitches in my eyelids (still do sometimes), 2 mild shingles breakouts, fatigue, neuropathy in my feet, and my hair didn't start to really grow back until I was finished with Herceptin, 2 years ago now this month.

The second attack of shingles was just last January, a year after my last Herceptin.

My heart function stayed normal the entire time.

Carol Ann

[Vinafera]

In 8/2015 I was diagnosed with stage IV BC w/ bone mets. Been on Herceptin every 2 weeks since 9/2015 with no end in site for that. Infusion of Herceptin every 2 weeks so it coincides with Zoladex and Xgeva injections. My only side effect of Herceptin was a reduction in my EF which a trip to the cardiologist fixed with a beta blocker. I've tolerated all the meds including chemo remarkably well. The chemo did permanent damage to my kidneys, but surprisingly they've healed more than expected. Overall I haven't had many health issues despite having stage IV with bone mets.

[justkelly]

Finished Taxol almost 5 months ago, continuing with Herceptin q 3 weeks. Only side effect is a runny nose.

[Jkosmas]

I am wondering if anyone is still talking about Herceptin Side effects? I am on maintenance treatment of Herceptin and Perjeta every three weeks indefinitely fo rthe maangement of Metastatic HER2+ breast cancer. I have noticed a couple of things the longer I have been on it. Easily fatigued, leg foot and ankle cramps or pain, neuropathy in my right hand and arm, horrible vision, sores and scabs in my nose. Anyone else have similar symptoms? I have also gained almost 30 lbs in two years without any change to my diet.

[Mtngrl]

I had foot cramps, runny nose, nose bleeds. No weight gain. I'm about to go back on just H&P, since chemo seems to do more harm than good.

[MaineRottweilers]

My experience is similar. I have been on it for two years and have wicked horrible muscle cramping, particularly feet and legs. My feet, tingle and burn. My nose drips continually, I sneeze a lot and have scabby sores inside, I have an insatiable itch up my left arm, shoulder and collar bone. The fatigue is debilitating. I am well enough and function just fine so I will not complain because I am alive.

[silvergranny]

I finished my last dose of Herceptin in December 2016 and have noticed a new bad body odor has developed over the past couple of months when I go to the bathroom. I am not sure where it is coming from....kidneys/bladder or vagina. I have no itch or discharge though. My urine smelled really bad during my Herceptin treatment so I am wondering if anyone else has developed this problem especially so long after treatment? I am going to the doctor tomorrow but wanted to know what to get checked and if this is common. Thanks.

[ariana]

Just one question. Do you drink enough water??? You can use a clear plastic little cup ,
thats used in the bathroom dispenser holders to check to see how dark it is.

If its real dark start pushing fluids a little more and keep checking. I am still on chemo
for the rest of my life and I do this to make sure I am getting enough . I also drink
from certain cups and water bottles that mentally tells me how much I had.
IF this doesnt resolve doing this go to med express or your primary care-they will check for bladder /urinary track problem.

[silvergranny]

I drink enough water. Urine is very pale. My doctor is already running tests. Just saw him this week.