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

[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

[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. 2011 May 9. [Epub ahead of print]
The effects of breast cancer diagnosis and surgery on cognitive functions.

Hedayati E, Schedin A, Nyman H, Alinaghizadeh H, Albertsson M.
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.

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

[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.

[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

[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...

[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

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