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-   -   Please post your two cents on Herceptin "side effects" real or perceived! (https://her2support.org/vbulletin/showthread.php?t=23696)

dchips1 01-20-2007 02:35 PM

Herceptin Works for me
 
I was dx stafe 4 IDC 1/06 now it is 1/07 and I am NED!!! Been that way since August. Liver and bone mets are gone!! Praise God and good drugs. I am a very active person, I have a blended family of 5 teens and a 6 yr old and I take care of special needs children, and work part time for the school as a nurse.
Timeline:
2/06 Mastectomy 3/9 nodes pos er/pr neg her2 pos
2/06 port placed
3/06 Taxol, carboplatnium, herceptin weekly x 3 then herceptin only for 6 months Zometa monthly (1rst two doses very sick 102 fever etc)
took neupogen, neumega, arasnep PRN
Good case of allergic reaction to carbo after the 16th dose
still on weekly herceptin
Good case of chemo brain!! Hot flashes and fatigue pretty much gone now
Brain still is not where it should be, Is this herceptin or chemo? Good question.
Finger nails brittle, peel MUGA at 62%-72%. I am going to get herceptin past a year, I feel like it has been the "juice of life" for me. I am NED and would like to stay that way.
I am going to continue weekly and I take coq10 and flax fish and a multivitamin.
My message to others with stage 4 is too never give up, be your own advocate!!! Darita

Debra 01-23-2007 01:17 PM

I have had 40 Herceptin infusions so far. I do them weekly. My biggest changes I notice and it started after Herceptin is the memory loss and how much more difficult it is to concentrate. It is a little scary at times. There are times I "question" if I called someone by the right name when it is someone I have known for years. I am also on tamoxifen but was not on that at the time I noticed these changes; just taxol and Herceptin. Other then that, some weight gain and a few aches and pains with the runny nose which, as many mentioned in this thread, crusts over at night.

rinaina 01-25-2007 11:36 PM

don't you hate it when a doctor or nurse makes you feel like your complaints of side effects are not valid just because they never heard of them? i am convinced there are things we just don't know yet about some of the side effects of herceptin or any newish drug because they haven't been around long enough to discover everything there is to know about them. no medical professional should poo poo any complaint we have about a possible side effect. it enrages me but since getting cancer i do not let it get the best of me. i simply tell the doc or nurse, "i know what i am feeling and if it isn't from the drug then what is it from? if they don't have an answer and it isn't listed as a known side effect, that doesn't necessarily mean it isn't from it. medical science doesn't know everything yet and never will. things change to quickly. that is my 2 cents.

Emelie 01-26-2007 08:04 AM

Lani,
Started Herceptin 1/10/07 as AC was not shrinking tomur. First round was OK. Second round with Taxotere had severe rib pain, hurt to breath and headaches.
Had 3rd dose yesterday and had headache waking up. I started with hot flashes, night sweats, insomnia when I started AC, so can not say that Herceptin is culprit, but none of these side effects have gotten better.
Let me know if I can help with responses. On leave from work right now and glad to help.
Emelie

darra 01-26-2007 09:47 AM

Hi
I am a sometime reader, first time poster. I finished my year Herceptin Jan. 8 and thankfully I can't say I experienced any horrible side effects. I definitely feel that my vision is worsening, I can be forgetful and am achy and stiff quite a bit. Ofh yeah, my previous long and strong fingernails are ridged and tear easily.

My question though is to those who have been off Herceptin for sometime....do your side effects go away as the drug wears off or are these permanent? All in all I am so thankful for this drug that will hopefully mean I never have to deal with BC again.
Thanks to all of you for your insight and wisdom, you have certainly helped me through this nightmare.
Darra
dx 10/05
t=1.2 cm, 2/12 ln +
her2 +
12/05-04/06 4AC + 12 T+H
05/06 35 rads
But I am so much more than my diagnosis!!!
Glad to be getting my life back!!!!

Andi 01-26-2007 10:04 AM

I had crusty nose, achy ankles when I first got up from laying down and the thin ridged nails. I took my last herceptin (my 1 year) September 13th. The nose cleared up and my aches went away, but my nails continue to be a problem. Due to a recurrence, I started herceptin again Jan 4 and the achy ankles are starting to come back, my nose isn't too bad yet.

Susan McQ 01-26-2007 07:08 PM

I was stage 2 er/pr neg and her2 +++. I did neoadjuvant chemo 4 AC's every 3 weeks, then 12 weekly Taxol + Herceptin. Completed Taxol in August of '06. I am continuing weekly herceptin, for a total of 1 year, just completed #33. All of my Muga scans have been great. I briefly stopped herceptin for 3 weeks after I had my lumpectomy in mid August.

Minimal side effects - dry skin - cracks on fingers, some vision changes. I don't have any other side that can't also be contributed to chemo.

Susan

pennyvphoto 01-28-2007 10:02 AM

Bone pain and muscle pain associated wirth herceptin
 
After starting herceptin I noticed very severe joint pain around my left hip,it was so painful I found it hard to sit or sleep..has anyone got any recommendations for pain ,can it be cured by exercise,or by exercising whilst on pain relief will I be making it a lot worse.Penny

tousled1 01-28-2007 12:42 PM

Penny,

I'm still on Herceptin and since I started Herceptin I have been plaqued with severe joint/bone pain - especially in the hip area. My last three treatments I had them reconstitute the Herceptin with saline water. What a difference - no more pain! I get my Herceptin every three weeks. You may want to ask your oncologist about this.

pennyvphoto 01-28-2007 04:35 PM

Kate

thanks for your reply,as far as I can gather they already use saline to reconstitute the herceptin - it would be great to find out what is happening with the joint/muscles,the ligaments seem to be slipping and unable to support the sacro iliac joint,causing instability and thus pain-will attend the osteopath clinic tomorrow for acupuncture which gives temporary relief.

tousled1 01-28-2007 07:05 PM

Penny,

Here is how Herceptin is usually reconstituted.

HERCEPTIN is a sterile, white to pale yellow, preservative-free lyophilized powder for intravenous (IV) administration. The nominal content of each HERCEPTIN vial is 440 mg Trastuzumab, 400 mg http://www.gene.com/gene/products/in...ages/alpha.gif,http://www.gene.com/gene/products/in...ages/alpha.gif-trehalose dihydrate, 9.9 mg L-histidine HCl, 6.4 mg L-histidine, and 1.8 mg polysorbate 20, USP. Reconstitution with 20 mL of the supplied Bacteriostatic Water for Injection (BWFI), USP, containing 1.1% benzyl alcohol as a preservative, yields a multi-dose solution containing 21 mg/mL Trastuzumab, at a pH of approximately 6.

I don't know what it is, but I can tell you that since I'm having them reconstitute it with saline water only my bone/joint pain has diminished.

tousled1 02-19-2007 08:18 AM

With so many new members, I thought I'd bring this discussion up to the front again. Perhaps it can help the newcomers

betlen5 02-19-2007 09:32 AM

Reaccurance while on Herceptin
 
Hi, I am going through my 4th reacurrance and was on taxol/herceptin for 3 months and herceptin alone for 9 months and the cancer has returned and waiting on diagnosis for what to do next. Has anyone here had a reacurrance while on herceptin?

Thanks, Betty
New to this site

atdec05 02-19-2007 03:08 PM

Hi,

This is a link to a news article that explains why some women don't respond to Herceptin alone, and what treatment seems to work. It sounds like it's only available now in clinical trials.

http://www.medicalnewstoday.com/medi...p?newsid=40964
- Anna

Tonya 02-19-2007 04:53 PM

Side effects? or life effects?
 
I was diagnosed 9-02 with BC stage 1. Did 6 rounds of chemo, no rad. clear scans untill 10-06 with mets to the liver Her2 positive. I have had 14 rounds of Herceptin every week with Taxotere on 3 off 1. I have had the bleeding, runny ,congested, swollen nasal passage ways. The muscle around my eyes constantly quivers and twitches (very annoying). Fatigue is mainly noticable 3 out of 7 days. Memory and putting sentences together seems to be getting worse. Weight gain is about 10 pounds. I have some bloating and fluid retention by the end of the day.I have lesions on my tongue, mouth is kind of sore all over. I have back pain in the small and left side of my back. Hot flashes are really bad at nite. Some weakness in legs but I am still working and living life to the fullest. Thanks for all the info its nice to know you are not the only one having these problems. Tonya

Tigerlily 03-03-2007 10:37 PM

Hi from Oz - thanks for the forum
 
Hi from Australia. My name is Kim.
This support group is a godsend. I have a lot of side effects I feel my onc. brushed off - esp diminshed concentration, crusty nose, nails and hair affects, breathyness, hip pain, nech pain and tiredness. He feels my immune system is just reacting. Nothing more scary could be under the surface to due the how good herceptin is for my situation. You are encouraged to report aches and pains - then made to feel you're a nut for thinking somehting might be stirring below.

I currently on Herceptin every 3 weeks. Have done so for 5 months. Previously I had AC+ taxetere every 3 weeks for 4 rounds and Taxol every 2 weeks by itself for four rounds. Plus 7 weeks of radiation. My start to treatment was a mastcetomy in Dec 2005.

So wonderful to have contact with sisters in similiar situations and taking control of their dis-ease. It can be very isolating in the non BC affected world.

Thank you and regards Kim

Stage IIIa 4 tumors - grade 3 11/24 nodes Her2 3+

Grace 03-04-2007 02:49 PM

Thought I did this previously!
 
I have a memory of doing this, but don't see my response, so perhaps not. No doubt, one of herceptin's side effects. In order of severity:

Runny, crusty nose (constant);

Dry cough (gets better at times but continuous);

Difficulty breathing at times, particularly first few days after an infusion;

Vision problems (difficult to focus in mornings; takes about 15 minutes of rubbing eyes before I can read newspaper; then blurry vision for rest of day);

Weight gain (15 pounds since diagnosis; I've been on a strict diet for the last month or so and have not lost a single pound);

Swelling in feet and ankles (some days worse than others);

Nails breaking, with ridges (getting worse with each infusion); as a side note, my nails have always grown very quickly, to my annoyance; not any more;

Hair growing slowly (thick, but very very short). Stopped chemo at end of October; it is currently about one inch to one and a half inchs in length;

Memory, word use, ability to spell are all impacted. I'm a professional writer, previously with an excellent memory. When I now review emails, I find words that have no relationship to what I thought I had written; often can't even use a dictionary to correctly spell a word, as I can't even do an approximation;

Last MUGA scan (currently six months on herceptin) indicated that I now have hypokinesis of right ventricle.

betlen5 03-04-2007 03:12 PM

I can relate with Grace on the following:

I have a memory of doing this, but don't see my response, so perhaps not. No doubt, one of herceptin's side effects. In order of severity:
Runny, crusty nose (constant);
Dry cough (gets better at times but continuous);
Difficulty breathing at times, particularly first few days after an infusion;
Vision problems (difficult to focus in mornings; takes about 15 minutes of rubbing eyes before I can read newspaper; then blurry vision for rest of day); Memory, word use, ability to spell are all impacted.

I also had and still have even after being off Herceptin for 5 months; lower back problems, hearing loss, sharp pains in my ear drums and eye areas. I stay tired a lot.

Betty

gin-tx 03-17-2007 09:39 PM

Side effects of Herceptin
 
This is my second episode of BC, first in 1995, clean and nothing showed on mammograms until I developed a different type of problem in April 2006. Went to breast surgeon who did biopsy, very surprised it was malignant. Saw a couple of onc who wanted to do aggressive chemo, was not happy with their treatment suggested. Had a bone scan and something showed on the scan, MRI revealed Stage IV metastatic cancer of the spine, so everything changed as far as treatment plan. Went to third oncologist and am so happy where I am. He recommended seeing the same radiation oncologist immediately who started treatments on my spine. Then had port installed and have had Herceptin and Aredia every 3 weeks since end of June 2006. Will probably continue with this regimen for some time. Have had more trouble lately with Aredia. I've started having chills from Aredia so they give premeds right away (benadryl and tylenol). I am on a multitude of other medications for blood pressure, acid reflux, but have noticed:
1. Significant change in vision, finally went to new opthamologist and got new RX for glasses, made huge difference.
2. Have had some bleeding from nose, rather heavy one day this week, did not mention to onc.
3. Have trouble sleeping, have tried 3 different sleeping pills, one did not work, 2nd pretty successful, third a maybe.
4. For the back pain from the tumor that is still there, radiation reduced some but it will probably never go away, the onc wanted me to try Vicodin, I fought it for months, tried it last night with 1/2 pill, did not help pain, could not sleep, and was dizzy and had headache until noon today. Will call dr on Mon.
5. No problems with fingernails, have pain in feet and they're icy cold at night, nothing new. Had that before.
6, No problems with strange tastes during or after treatment, but cannot eat during treatment. Thought of food makes me sick. Some people bring in burgers, etc. Smell really bothers me.
7. I have started to lose weight, weight stayed same until about 6 weeks ago, now I've lost appetite, can't eat much, and am losing weight.
Think that's about all. Keep in touch and let me know how you are progressing with your symptons.
hugs,
ginkott1@aol.com

nitewind 03-18-2007 05:55 AM

I've been on herceptin alone for three monthes. I finished all the chemo and I'm currently doing radiation. I'll be doing the herceptin for another seven monthes. Biggest change for me is my vision. I have a very hard time focusing, sometimes things go out of focus all at once. (Not fun when you're driving, I've had to pull of the road a lot, now I'm afraid to drive). Saw an eye specialist and he says I have dry macular degeneration, there's nothing they can do for it. I guess it will steadily get worse.

Also, lately, I have had some bowel problems, the dietician put me on a low fiber diet to help control it but so far, no luck! I still consider myself lucky if the herceptin is working, but how do we know for sure if it is? I ask my onc all the time "how am I doing"? He says you're doing well. Who knows?
Hugs to all
Susan

Carol Carlson 03-18-2007 07:58 AM

I was on Herceptin for a year ( every 3 weeks ) from June /05 to May0/6
I was 9 months out of standard chemo when I started--I am stage 2B

Noted side effects
!. stiffness and achyness esp. in hands in the morning, hip pain while walking any distance ( still have that ) could be arthritic.It would also take a while for my feet to get going in the morning... sometimes they didn't feel like mine.

2. insomnia-- never was a "good" sleeper but definitely worsened on Herceptin.
( in fact I still have a PRN supply of a sleeping med and take it maybe 2-3 times a week)

3 weight gain-- 10-15 lbs, lost it after I stopped taking Herceptin but it seems to have crept back on

4. the nails-- Still split and don't grow as long as before

5. I've noted some thinning of my hair and that has remained the same

6. fatigue-- wonder if that will ever go away... after my surgeries, chemo, rads and then a year of Her., just don't seem to have the same energy level
and I do all the right things ( could be my age.. I'm 66 ) an oldie in the group

7. mental status-- didn't notice anything remakrable there.... maybe I've always been a little " foggy"---- just kidding---- I'm sharp as a tack


Overall, even though these things are annoying, I would say that after standard chemo, it was a breeze.

Hope this helps.
There seem to be many common threads re: side effects.
And as someone said previously, sometimes my onc. would look at me as though... how could you possibly have these things wrong, they aren't listed
in the medication insert !!!
Now, perhaps, they will start to look at these symtoms a bit more seriuosly with collected data.

Regards,
Carol

Val Pfeiffer 03-18-2007 08:17 AM

Very thirsty
 
I am now on Herceptin only quarterly. I had a triple dose on Thursday. I never noticed this before, but yesterday when I went to my spin class, I drank THREE bottles of water in one hour. I am very thirsty for a couple days after (which isn't a bad thing). I just found that strange, and I didn't notice it as much when I was on a more regular dosage. I have a few of the symptoms that you guys mention, but not nearly as bothersome as some of you have experienced. I have had no weight gain--same weight as always, which didn't change during chemo or radiation either.

Gerri 03-19-2007 10:02 AM

I'm Done!
 
Hi All,

I have been waiting for the day when I would finally be done with my Herceptin treatments and it is now here! I was on the every three weeks plan for one year and had my final (I hope) dose on Friday, March 16. My side effects (not necessarily in the order of frequency or annoyance factor) are:

*Chills - all the time, not just during infusion
*Jerking/twitching of my legs
*Lost my eyelashes (twice)
*Slow hair growth (but VERY happy to even have hair to grow slowly!!)
*Brittle nails
*Fatigue!!!
*Weight gain/inability to lose weight
*Cracked skin on fingers
*Vision changes
*Drippy/runny nose
*Back pain (chemo?)
*VERY tired/heavy feeling legs
*Stiffness after sitting

When all is said and done, this was a pretty easy road to travel. The year went by quickly and now I am looking forward to my "new normal".

Wishing you all good health!!

Gerri

janet/FL 03-19-2007 10:13 AM

Gerri
Your list was perfect and a "must read" for newbies. I had everyone of them except for "losing my eye brows." I am now 8 months since my last treatment and am happy to report most these changes--GONE !!
I am going to add it to the bottom of this list. If anyone would like to add more, I would think copying the list and adding it might be helpful to clarify all that can happen. And eventually the list could be posted by itself.

The only side effect I had that I would add--is insominia. And that too is getting better.
*Chills - all the time, not just during infusion
*Jerking/twitching of my legs
*Lost my eyelashes (twice)
*Slow hair growth (but VERY happy to even have hair to grow slowly!!)
*Brittle nails
*Fatigue!!!
*Weight gain/inability to lose weight
*Cracked skin on fingers
*Vision changes
*Drippy/runny nose
*Back pain (chemo?)
*VERY tired/heavy feeling legs
*Stiffness after sitting
*Insomnia

Brian 03-19-2007 03:19 PM

Long Term User
 
My wife, Lisa, was initially diagnosed with IDC in December, 1991-NED for 10.5 years-Recurrance in liver and lung in May, 2002. She has had every treatment known to man since May, 2002-Has been on Herceptin since July, 2003 to which she has had a complete response. Was NED from July, 2003 to January, 2005 when cancer again appeared in old scar tissue in lung. NED again after surgery-Stayed on Herceptin throughout-Gemzar added for a few months-April, 2005-Lisa had a stroke while in Italy and a small brain tumor found-tumor was gamma knifed and gemzar continued-October, 2005 cancer discovered in liver where previous tumors were ablated. Areas again ablated and Xeloda was added to herceptin. Xeloda treatment ended April, 2006-Lisa has been NED since liver surgery in October, 2005 and has been on weekly Herceptin ever since.

SIDE EFFECTS-
1. Dry-Bloody nose.
2. Runny nose-Constant
3. Periodic muscle cramps throughout body
4. Joint pain in knees, elbows.
5. Muscle pain in arms
6. Muscle spasms in back.
7. Thin weak toe nails and fingernails.
8. Slow growing hair.
9. Fatigue.
10. Acid reflux and peptic ulcers.

Herceptin has been a miracle drug for Lisa, but although it is keeping the cancer at bay, the side effects have become burdensome enough to impose on her daily life. We have been able to control her nausea and muscle pain lately. We are working with the Docs to check blood levels of various chemicals to see if we can get some permanent relief from these problems.

Good Luck and God Bless to All!
Lisa and Brian

hutchibk 03-19-2007 04:08 PM

I have been on Herceptin since September 2005, sometimes with chemo, and sometimes by itself. I am currently on Herceptin until the cows come home, in combination with Taxol, every 3 weeks. Here are my top 10, but I think some of them may be exacerbated by the Taxol, as they weren't as acute when I was on Herceptin by itself...

1. Dry/scabby-sometimes bloody nose.
(Solution for me: antibiotic ointment on Q-tip inside nostrils AM&PM-
it's wonderful, healing and soothing)

2. Runny nose-Constant
3. Periodic muscle cramps throughout body
(Solution for me: I try and stay ULTRA-hydrated which really seems to help... and when I get a particulary mean leg cramp, I eat a banana which usually works pretty quick)
4. Joint pain in knees, elbows (Solution for me: motrin)
5. Stiffness after sitting and sleeping, especially in fingers and ankles.
6. Tired/heavy feeling legs and jerking/twitching of legs
7. Thin weak toe nails and fingernails.
8. Fatigue.
9. Acid reflux. (Solution for me: Nexium when needed)
10. Watery/drippy/teary eyes (Solution for me: Patanol eye drops)

Allie1947 03-31-2007 09:41 AM

I was diagnosed with ibc in Oct. 2006...started chemo in Dec. 2006, getting treatments every 3 weeks. Then started weekly treatments of taxol and herceptin in Feb. 2007. I'm in my 6th week...with 6 more weeks to go. During this time my hair has started to grow back in slowly...lost that after the first dose of chemo in Dec. My symptoms with taxol and herceptin are as follows:

aches in feet and legs, especially after going to bed
fatigue
brittle nails
dry skin
sinus issues
dry nose...with some bleeding
headache
body aches and pains
joint stiffness
back pain...which I attribute to a previous condition of sciatica, but maybe not.
insomina....
memory loss...often can't remember particular words, which could be related to lack of sleep, I suppose.

and ...something new...my heart seems to be pounding a little harder..and I find I'm feeling like I can't get enough oxygen at times. Will let Dr. know on Friday when I see him as this hasn't bothered me much before.

SandyR 03-31-2007 09:53 AM

MUGA Scan
 
Allie, by all means you need to get to the doctor....
While on herceptin your doctor should be monitoring your heart with a Muga Scan. Herceptin can lower your heart's ejection fraction for your left ventricle and you could go into a temporary heart failure.
If this happens, it is reversible by giving your body a rest from herceptin.
Good luck!

SandyR

StillHere 03-31-2007 06:41 PM

Watery/Teary/Dripping Eyes
 
I never connected my running eyes to my Herceptin use, but now it makes sense as it has stopped since I had to discontinue due to LVEF of 40 last year. I just thought it was a cold, or sinus issues. Not that I had ever had eyes that tear up and run down my face for no reason before. It did not start right away. I was 5 to 6 mos into Herceptin treatment before I had the eye tearing thing. I have also had just about every symptom listed in above threads, but very tolerable.

harrie 03-31-2007 08:21 PM

nose irritations
 
Suggestion for the nose irritations: I had that problem. I thought it was from the chemo impacting the nose vessels causing the nose to bleed slightly, and also a little runny. It is a lot better now, but while I was having the problem which lasted over a month, I bought a nose wash (which looks like a little teapot and you use it to pour in one nostril and out the other). i would put a very diluted antiseptic mouthrinse (such as CrestPro Health, WITHOUT ALCOHOL) into the water. I also bought a nose spray to keep it moist and that helped a whole lot. My primary physican looked inside and saw some inflammation, so she recommended I use an antibiotic cream, applied with a q-tip, only at night.
I don't know which of the above helped the most, but the end result was significant improvement.

Harrie

gin-tx 04-03-2007 06:08 AM

Herceptin problems
 
Yes, all the symptoms you are experiencing are from Herceptin. This wonder drug sometimes is a pain to deal with but is still a wonder. It's kept me going for the past 9 mo. If my ins co would just pay for all of it, that's another issue.
I have constant runny nose, insomnia, joint pain, pain in feet at night, had acid reflux before but it's gotten worse, think that's enough. But I deal with it and try to keep going. Hope this finds you doing well, you've had a lot to deal with.
This is my 2nd episode of Bc, other was 11 yrs ago. But totally different types of tumors, the latest was much more aggressive.

Keep me informed of your progress.

ginkott1@aol.com

janet11 04-03-2007 12:19 PM

Re nails. I finished TCH (with Taxotere) in mid January (last infusion Dec 27) and I'm STILL having nails lift and separate. A new one started 2 days ago. My onc and I are definitely blaming the Taxotere (does Taxol do this too?), not the Herceptin. It's just such a slow side effect, I hate getting this MONTHs after finishing chemo.

But we don't think it's Herceptin at all. It's definitely a common side of the Taxotere.

theresaw 04-06-2007 04:16 PM

Well it is good to know that i am not the only one having these effects of Herceptin. Everytime i mention something to my doc she looks like i said some thing alien to her. When I told her my toe nails came off she told me I may have had a fungus..NOT! they still haven't grown in yet..

gin-tx 04-07-2007 07:33 AM

Problems with herceptin
 
I think everyone is affected in a different manner. I have runny nose, which I take something but some days it makes little difference, difficulty sleeping, so take something to help me rest at night, when I don't I toss and turn all night long, no problems with toenails or fingernails yet, dryness in nose and nose bleeds (only happened a couple of times). And of course lots of fatigue in daytime, I usually come in from work as I work part time and sleep about an hour. Also I have a tumor on my spine that makes it difficult to lie on my back, so finding a comfortable sleeping position is not easy. Have had radiation, it shrunk some but cannot be removed because of location.

Keep me informed of your progress. I think this site is so wonderful to air our complaints, sometimes our families or the docs do not understand.

hugs,
ginkott1@aol.com

harrie 04-07-2007 12:42 PM

side effects
 
It is interesting to read all the various side effects. My BIGGEST complaint is the excessive salivation during waking hrs when I am not eating. Last night found sucking on sugarless Ricola helps a whole lot. My fingernails are starting to look like small bleeding beneath the nails. Insomnia....not me. I sleep really, really good. The few days i take the decadron, I might have a slight problem, but over the counter Sominex (1/2 tab) is all I need to fix that.
It is one wk past my last TCH tx and I can feel the fatigue. When I do some of my cardio at the gym, I can definitely feel the difference.

gin-tx 04-09-2007 10:52 AM

Side effects of Herceptin
 
Dear Maryanne,

I have none of the side effects you mention. So far nails have been fine, salivation no problem, have lots of allergies, so take something for that. Biggest problem is I'm noticing I'm very tired for a couple of days after treatment, just slept a lot over week-end and watched TV, did not exert myself at all. Had no energy to do much. If I don't take something to sleep, I may sleep till around 2 am, then I'm up for a couple of hours, then tired the next day. I have other issues but they're totally different from yours. For the most part I think I've done fairly well. Now noticing how tired I get after treatment, don't know if it's Benadryl or the Herceptin. Keep in touch and let me know how you're doing.

hugs,
ginkott1@aol.com

Adriana Mangus 04-10-2007 01:07 PM

Question??
 
May I ask you about your bc. I was diagnosed in 1994 and am dealing with my 2nd bout with bc.


Will you be receiving Herceptin for life?
What type of treatment did you receive first time around?
Did you have mastectomy?

Any other information will be appreciated.

Thank you Gin-Tex

theresaw 04-10-2007 03:08 PM

I was diagnosed June 2006, left breast, her2 post. non hormonal. From July 2006 to Sept. I was on what I called the Red Death (sorry if it sounds bad) then from Oct 2006 to Nov was on Herceptin and Taxol, then Dec until April 2007 just Herceptin. Yes I had Mastectomy with reconstrutive surgery, the tram flap.
Can I ask you when your reacurrence happened. I am concerned about reacurrence because it is in my family. I know with all the Meds out there i shouldn't be worried, but I can't help but think about it.
I hope this was helpful.
Thanks

Malena 04-11-2007 07:48 AM

I finished the chemo on may 2006 with a 55% of FE. I started herceptin on June 2006. After only 2 infusions (every 3 weeks) I had a serious heart problem (FE 15-20%). I stopped herceptin.

Adriana Mangus 04-11-2007 01:18 PM

Sooo Young!!!
 
Dear Malena: I was devastated when I was diagnosed at age 38, but you? Oh God soo young. Have you heard or Tykerb? Maybe this new drug will work for you. Too bad you couldn't continue with Herceptin. I have been on it for the last almost 4 years in August..so far everything seems ok..I keep praying....I have also been taking Xeloda for the last 3 months due to the tumor growing back (little, nothing to be concerned about for now) and it appears that it's working. I will be seeing the onc. May 2nd. Keep the faith and pray HARD.:)
Stay Positive....Best of all to you...


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