Please post your two cents on Herceptin "side effects" real or perceived! - Page 20

chrisy · 10-08-2011, 01:07 PM

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 · 10-12-2011, 07:09 PM

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 · 10-21-2011, 10:42 PM

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

StephN · 10-22-2011, 11:15 AM

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 · 12-19-2011, 11:52 AM

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 · 12-19-2011, 12:14 PM

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 · 12-19-2011, 03:53 PM

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 · 12-19-2011, 04:05 PM

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.

pmm10414 · 12-20-2011, 04:15 AM

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

Rody · 12-20-2011, 03:52 PM

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

Ms.Judi · 12-24-2011, 11:14 AM

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.

Kroesen · 12-20-2011, 10:07 AM

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/

atuck · 01-07-2012, 09:09 PM

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 · 12-20-2011, 01:00 PM

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 · 12-20-2011, 01:50 PM

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

iamlisaann · 12-20-2011, 02:45 PM

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

rhondalea · 12-21-2011, 07:15 AM

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/cg...gAbstracts/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 · 12-23-2011, 02:42 PM

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 · 12-23-2011, 03:00 PM

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

Kroesen · 12-23-2011, 03:06 PM

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).