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

[islandgirl]

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]

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]

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]

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.)

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]

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.

[harrie]

Sandi,
Right after chemo my nails turned very dark and some were loose, etc. Went to the nail salon figuring they were experienced and could offer suggestions. Right away they said it was a fungus. (sure did look like it) Contacted my onc and he said it was NOT a fungus and NOT to use anti-fungal meds, but side effects from the chemo and to put tea tree oil on it. Sure enough it cleared up.
Hair: mine grew back slowly at first and after about 6 months, took off like a week!!
Hope this helps.
Maryanne

[sandyinde]

Thank you Harrie, I'll try to find some tea tree oil!
Sandy

[pibikay]

The latest on side effets of my wife.
The wbc has come down to 1400.Haemoglobin little < normal range.Fever occassionly with sweating Pains in the legs. Bloody motion.She is due for her next chemo and herceptin on the 18th.Onc said normal side effects
PBK

[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.

[sandyinde]

Thanks for your comments Patrice. I'm 69, so I don't have the monthly issue. I forgot to mention in my earlier post that I have had a drippy nose for months and sometimes get a coughing spell that I attribute to post-nasal drip. But it seems just about the same now, in pollen season, as it has been for several months.
Sandy

[weety]

I'm 39 and I feel like I'm 89. I'm stiff and achy all the time and if I even sit in one position for longer than about 10 minutes I get all stiff when trying to get up. I'm not sure if it is the herceptin or the lack of estrogen from the chemo-pause.

I also have the eye problems. I'm not sure if it is dry eye, but I'm going to try some drops and see if that helps.

I'm tired of feeling old and fatigued. I can barely even make myself do a short session on Wii Fit because just thinking about having to lift up my legs for even something as simple as the Step Aerobics makes me tired! I sure hope this gets better as time goes on. . . but I'm scared it might be the lack of estrogen, like I mentioned above, and if so, it will probably be long-term. YUCK.

[weety]

I forgot to add about the low bloodwork. I'm no longer anemic (4 months out) but my WBC's and platelet scores still seem to jump all over the place still. At my last herceptin treatment my WBC's were only 2.4!!! My onc said "Wow, that's like chemo levels!!!" Last week they were back up to 4.1, but that's still pretty low.

[pibikay]

I am a care giver and I am just putting down what I have noticed.It is my wife who is undergoing chemo & herceptin.Her cheeks get puffed up and she says she cannot taste somethins.But during the tests after the first herceptin and before the second the RBC WBC count have risen.But the protein has come down as also calcium.After her second chemo last wek with herceptin for the last two days she says that it pains a lot when she walks using the walker.Her musceles nerves and joints ache.But she has got back her appetitie today
PBK

[schoolteacher]

PBk,

Welcome to the board. The redness could be from the steroids. I had pain in my bones also.

Amelia

[linda b]

I was on Herceptin from April 2007 to May 2009, every three weeks. Side effects- weight gain, thin nails, hot flashes (menopause?). My blood counts and MUGA were normal throughout the two years

[Whonoze]

I have been on since 2/07. Main side effects are runny nose, thin nails, bruise easily and frequest foot cramps.

[sailor]

I was on herceptin with taxol and then herceptin by itself every 3 weeks for a year. My cancer was stage 3c. I felt no side effects from the herceptin by itself. The taxol gave me mild tingling in the fingers.

Hi Lani,

first of all, i need to inform you that I’m not English native speaker, hope that you will be able to understand to what i have to say.
My mom is on the 13 cycle of herceptine, her biopsy test is her2 stage 3+ positive of the breast cancer, all the rest was clean (such as bones, lungs liver kidneys etc.), also she is diabetic, during chemo (doxorubicin 6 cycles, docetaxel 4 together with herceptine0. During this period she was fine, she finalized radiation therapy oct 2009 perfectly, after the 12 cycle of herceptine which is taking every three weeks, she got a flu and had problem with lungs, during this period, her oncolog was on holiday, and i had to direct her to another doctor who is just Chest Doctor. He is suspecting on having a spread since her lungs look in very bad condition, (i hope that I’m using the right words, i again apologies).
According to her oncolog, it is impossible to have a spread of the cancer during the cycles, i am wondering is this true or not.

She has 5 more cycles of herceptine to go, but right now, she is being treated from so called lung disease, which made her very weak.

it is worth to mention that, every time she took the herceptine, after 3-4 days she was feeling very bad, and for a week or so, she was recovering. this effects made me think to stop with herceptine, but her oncolog advised not to do so, since according to her it is a perfect medicament.

i hope and appreciate to have an opinion or information on this regard,

Thanks allot, Edi

[wlproctor]

I've been on herceptin alone for 6 months.

Current side effects: extreme fatigue, especially the first week after infusion, moderate muscle weakness, moderate muscle and bone pain, occasional headaches, persistent insomnia, occasional nose bleeds, acne/rashes.