Please post your two cents on Herceptin "side effects" real or perceived! - Page 24

v-ness · 11-15-2009, 04:42 PM

i just started herceptin on october 8th and am currently getting it weekly for my 18 wk chemo tour of duty. i am salivating like pavlov's dog. i'm assuming it's herceptin since i haven't had chemo for over 2 wks at this point. it's weird, but better than having my eyes tear, which happens for about 2 days after H. i've also started having morning headaches and wasn't sure if it was storm Ida that caused it (i get barometric pressure related head stuff) or herceptin. i'm thinking herceptin. the latest is that my whole head feels swollen. i mean literally swollen - my wigs suddenly feel too tight! now that is really annoying. i dig my wigs, especially Desiree, and i don't care to do the scarf or bare head thing at work. one time, though, Desiree was itching me bad (again, i have no idea why that day and no other) and so i took her off and hung her on the coat rack over my pink winter coat, which looked quite comical. i passed the day in my little black velvet oliver twist cap. i have yet to brave going bare-headed (except in my house and backyard). i've developed a fascination for petting my freshly shaved head. velvety soft!
valerie

Sandra in GA · 11-17-2009, 09:06 AM

Swallowed my last Tykerb at 7:30 this morning. Had my last Herceptin on Wednesday. Finished!!! (I hope)

I am looking forward to days where I don't have to be in close proximity to a bathroom, can eat fresh fruit, and have stamina to complete projects.

I am very thankful I was able to get into the phase II trial that included the Tykerb with the Herceptin along with the reg. chemo and radiation, especially since ALL my lymph nodes under my left were positive. I understand there are already phase III trials going on that look at Tykerb as a "stand alone" or in combination with Herceptin treatment. Time alone will tell if this combo protects me from this HER2 dragon.

Just wanted to share this very special day with those who understand.

Lien · 11-27-2009, 12:47 AM

Thought I'd bump this up.

I didn't get Herceptin. My doc said that he's seeing quite a lot of SE's from it. He said some do better than others, but a few unlucky ones are really sick. He said: "They feel like old women, in stead of the 40-something they are in reality". He told me he'd rather save Herceptin for a recurrence and see how I do without it. So far so good. I'm almost 6 yrs out from diagnosis.

Jacqueline

Cal-Gal · 11-27-2009, 05:35 PM

Thanks Lien for bumping up---all my recent SE's fit the Herceptin model--except the dizziness--

pmm10414 · 12-05-2009, 02:59 PM

I am on my 34th Herceptin treatment. Doctor want me to continue until summer 2010 to give me greatest chance of cure. I have to go sleeveless to oncology clinic. I get hot flashes within minutes to infusion starting. My face is all red. Since I started fosamax I have not had as many joint and bone aches. Maybe just timing not sure but I will take it.

PatriceH · 12-05-2009, 04:51 PM

I am perplexed. I received Herceptin as part of my chemo and am now receiving treatments of herceptin alone through April or May - every 3 weeks. I don't think I've experienced anything like what is being described. Are side effects cumulative like taxotere and carboplatin?

DianneS · 12-05-2009, 05:19 PM

I finished herceptin in Sept. and have noticed since stopping that I sometimes get what I call the chills. I get really cold even tho I am bundled up. Other times I get hot. It's very annoying.

Anyone else? If so what does your doctor say?

Thanks

Dianne

pmm10414 · 12-05-2009, 06:55 PM

I sometimes get chills but the hot flashes drive me crazy esp when I first receive my weekly treatment. I react to all chemo though so everyone is different. It seems that for me the side effects other than hot flashes (headaches, muscle and joint aches) are getting to be less with time. I can only hope that it does not get worse since I am roughly half way through my post operation year of Herceptin.

Jackie07 · 12-10-2009, 03:09 PM

I think one of the side effect of Herceptin is that I am so much tougher now than two years ago. (Psychologically and physically.) The side effect of Herceptin is that I've found so many warriors here that I could immulate and be inspired.
[I'm writing this to get rid of the bombardment of Tololo Ads...

pmm10414 · 12-10-2009, 06:19 PM

Has anyone had anemia from taking the Herceptin. My counts are still not back into the normal range 6 months after finishing taxol -- still on Herceptin weekly.

Jackie07 · 12-10-2009, 07:12 PM

I had quit Herceptin long time ago. During the 18 weeks of TCH, I had to have 'shots' to boost both my red blood cells (once) and white blood cells (twice) I did only 4 weekly Herceptin only infusion and had to quit because of decreased MUGA score.

simpo · 12-13-2009, 12:01 AM

I have been on 3 weekly herceptin since August 2005. I have had very few side effects just the ocassional flu like symptoms on the 3rd day after treatment. In fact mostly I have felt remarkably well. However I have developed Parkinson's like symptoms, shaking, small writing, weakness in one side; I am due to have a brain scan to rule out a brain tumour, and then I will see the neurologist who will do the diagnosis. I may well have Parkinson's and these symptoms are nothing to do with herceptin, just an unlucky cooincidence. I'll keep you posted.

APRILSHER2 · 01-07-2010, 11:11 AM

taxol causes hot flashes so herceptin may not be the culprit

Sandra in GA · 01-07-2010, 12:11 PM

I finished Herceptin and Tykerb the middle of Nov. and while most of my side effects are clearing up, my hands and feel stay cold. I always had rather warm hands and feet before this bout with bc. I don't know if Herceptin is causing this or not. I do suspect it may be the culprit.

islandgirl · 01-07-2010, 07:24 PM

Hi: I am in the middle of year-long herceptin treatment. compared to taxol, there are much fewer side affects, however, as I progress, I have found myself to have increased muscle and joint achiness, lethargy, weight gain. I keep mum about it, due to the comparison to chemo, however, I am definitely not myself..

chezzy · 01-26-2010, 03:26 PM

I am almost at the end of my 12 months Herceptin, feeling old and lethargic, still aching feet (taxol?) have very itchy skin on my arms and occasional diarrhea. Not sure how much of this can be blamed on Herceptin, it will be interesting to see how things change when I finish. Like Islandgirl I am definitely "not myself" but maybe that is the legacy of this whole cancer process.

islandgirl · 01-26-2010, 07:17 PM

Hi Cheezy: Just got your comments regarding your herceptin side effects. It IS difficult, isn't it, to discern what is what. I'm told I have fibromyalgia now (which, frankly, I don't even like to say out loud because people seem to roll their eyes). I have been an avid gardener and though petite, have always prided myself in being able to lift lots of weight, be strong, tough. Now I seem to pick up the "Joy of Cooking" cookbook and feel sore in my thumbs and arms. I mean, how dumb is that? I wish you well.

Islandgirl

whatz · 01-27-2010, 05:16 AM

Hi islandgird & chezzy,
I feel very similar to both of you. At 43 I'm getting off the couch like I'm 70 years. It takes a few tipples before I can straighten up. I didn't attribute this to Herceptin and thought this was left over from Taxol (Mine is not quite as bad as islandgirl though). I finished the Taxol first part of Dec 09 and I feel like it has gradually gotten better (very, very gradual but at least change in the right direction.)

03-19-2010, 09:11 AM

Diagnosed Feb. 2009
Double Mastectomy Feb 2009
Started Chemo (6 rounds) and 52 weekly Herceptin Mar. 20, 2009
Stage 2B Grade 3, 2 lymph node positive.
er+/pr+ HER2+++

I too have had thin cracking nails but am also on Arimidex so thought that was the cause. Have been taking 1800 calcium a day and Boniva once month

Sinus issues. Never have had these problems. Assumed it was residual from chemo. Never thought about Herceptin connection

Feet and leg cramps!! Again, thought it was my shoes!!

Back pain.

As of late I have round finger tip sized spots that appear. Don't itch, don't hurt just appear and then go away in a few days. No sign of a head on it like a bite. Little tiny vein like appearance inside the spot.

Eye pain and discomfort. Was told by an opthomologist that chemo can damage tear production. Put on Ristacia (sp?) for dry eyes. Does not seem to make any difference and has been over a month. Vision in my right eye has continued to worsen and my glasses were new last summer.

Fatigue. Assumed that was from the chemo and all I have been thru.

I have only 3 treatments left!!!

sandyinde · 04-11-2010, 06:01 AM

I had stage 1A, mastectomy, HER2+, negative receptors, etc. I completed my chemo on Nov. 17 and am continuing Herceptin every three weeks with 1.5 hour infusions until July unless I change my mind over the side effects.

The nurses tell me to see my primary care doc, suggesting these are not related to Herceptin, but after reading above, I think they are:
. really painful knee problems
. now starting pain in lower back
. the combination makes it very painful to raise or lower myself from standing, sitting or prone positions
. all my finger nails have deteriorated [never had problems before] They break vertically and none are normal anymore
. got first in my life ingrown toenail on big toe. It got infected requiring antibiotics. By the time I got to the foot doc, the other big toe had an ingrown nail. After those were better, the first toe had another ingrown nail on the other side from the first time. It got infected and I was on Cipro before I saw the foot doc. It appeared that there was fungus under the nail by this time. I chose not to get the liver test and do the meds for fungus and now that nail is white, loose and ready to fall off.
. I am constantly hungry and am gaining weight.
. Also feel bloated and my body is bigger than the weight gain. In other words, for a 5 pound weight gain, I am up one size. When I gained that much in the past, it did not affect my dress size.
. recently I have been having numbness in my right hand upon awakening every morning. This morning I paid special attention and noticed that I was not sleeping on it in an unusual manner.
. I have itchy spots especially around the area of the mastectomy and near my underarms.
. My hair is growing back but not as fast as it used to grow.