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

[Alieh]

I had my first doze of Herceptin last week along with chemo drugs; today (one week later) I am experiencing heart palpitation. Is this a normal side effect and will it go away in a couple of days? I appreciate your comments.

[Andi]

I'm currently taking herceptin once every three weeks with a 30 minute infusion, to be completed in September. I started it last September taking it weekly for 12 weeks with Taxol. I continued with the every 3 weeks while taking my radiation. Currently the only other mediciation I am taking is Tamoxifin. I have some "crusties" in my nose and my nose will run when I am exercising. My fingernails are very thin and I do have a tightening of my ankles when I sit or lay for awhile. If I just remember to do some stretches before I get up, then I am fine. My MUGAs have stayed pretty constant as has my weight.

[panicked911]

I was diagnosised 9/14/05 ( my daughter's 10th b'day). lumpectomy right side 10/5/05 - immediately put on tamoxifen - started herceptain week before thanksgiving - began lupron shots 12/1/05 - switched to arimidex the following week. Aches and pains started within a week. mostky joint aches and i the feet and arches. Wet thru reexcision ( came up clean) 1/16/06 - contnued with weekly herceptain - started radiaton 2/12 - ended last monday in march. Cotinued weekly Herceptain thru April 18. Now doing herceptain once every three weeks.
Interestigly i developed a sinus infection early March - was given leviquen - had a horrible reaction muscle aches beyond belief and severe pain - switched to ceftan pain abated 50% still have it mostly in knees ad elbow joints. - was convinced it was the leviquen - now wondering if it a combo of the antibiotic and herceptain and arimidex.
Liver function test slightly elevated since end of march when I started Rhino aquacort for the sinus infections ( which i could blame the herceptain but I had this prior to BC diagnosis) .

I seem to be tolerating it much better at 3 week intervals tha weekly- have been ADD since November - can oly go back to work part time - and have less energy than before - but even that has come back slightly on my off two weeks of herceptain or it can be b/c doen with radiation and that takes awhile (3-8) weeks to leave system.
I am on a one year stint of Herceptain - stage 1 -no node involvement

[Mgarr]

Oh I forgot that awful taste in my mouth I get during infusion and for approx. and hour afterward.

[Berta]

I am Stage I. I took four rounds of epirudicin and cytoxan ending in March 05. I was called back in for Herceptin in July. Since that time, I've had runny nose, night sweats, flaky nails and have gone through two perscriptions as my nearsightedness has gotten progressively worse. I've also gained about 30 lbs. I don't know how much if any of this is related to the herceptin but the docs do believe the vision problems are not explainable any other way. Having said all of that, I would gladly take herceptin for the rest of my life if I could find someone who would prescribe it. I take it every three weeks. Berta

[Bev]

Hi, Stage 2, ER/PR+, 4Ac, then taxol And Herceptin 12 weekly beginning 11/05, solo Herceptin since 2/05. Rads in March. Tamoxifen begining mid April.

Really felt the foggy and fatigue cloud lift shortly after taxol. Reading vision, focus, has rapidly gone downhill, but i am at that age. Ditto memory. Really runny nose that crusts overnight. My ears stuffed up so I couldn't hear for a couple of months but started taking claritin etc. so I can hear again. BMs are loose, thought it might be the rads, but things haven't gone back to normal yet after 4 wks off rads.

Overall though, feeling great. No headaches, no pain, no infusion reactions. Muga is fine,

Thanks Lani

Me too me too. Gosh I feel so relieved that other people experience these symptoms. Joint aches, lower energy levels, and my scalp hurts sometimes. Oh and flaky nails. Hey ho better than being dead eh. But my chemo nurses continue to state that there are no side fx from Herceptin.

[KLW]

I get Herceptin every 3 wks, 8 to go. The only side effects I'm having are runny nose, brittle nails, feel a little tired and lower half achey, but that may be due to the Tamoxifen, which I started 3/20/10.

Diagnosed 6/17/10 at the age of 40
Stage 2A
Ductal and lobular
Two 2cm tumours
Double Mast. 7/22/10
ER PR + HER 2 +
treatment AC T 8/10-1/11
Herceptin every 3 wks through Oct '11

[sandy truett]

I was on herceptin weekly for one year. I had some upper teeth pain (sinus?) about the 11th month but it disappeared 2 months after finishing the herceptin. No weight gain or any other pains.

There's an extensive post somewhere on this board that discusses vaginal dryness with lots of good advice. You might try a search. It may have been started by Brenda or Becky, and it's worthwhile reviewing.

[Kaye]

I was on weekly Herceptin for one year. After my initial treatment (loading dose), which I had at same time as Taxol, I don't believe I had any symptoms from Herceptin. I did not need to take any pre-medication with it. I also asked if I could receive it over an hour, and the nurses usually did that. I was able to rest and relax during that time. I received it "early stage." I started with it almost 4.5 years ago.
While I was on it I developed 3 attacks of acute pancreatitis--each 13 days apart. However, this was after I had been on it 6 months and also occurred about 7 or 8 weeks after I started an AI (aromatase inhibitor)--Arimidex. I think, if anything, the pancreatitis may have been related to the Arimidex. However, a private radiologist thought the pancreatitis may have been related to having many enlarged retroperitoneal nodes which I had since time of diagnosis.
Also, one week week after the last of the above pancreatitis attacks, all blood levels were normal. About a week later I developed severe fatigue and weakness (including muscle weakness in legs and eyes). New blood tests showed that I was hypothyroid but my testosterone level was very high as well as AST. I was put on thyroid medication and level returned to normal with about 2 to 3 weeks.
Because of the high Testosterone level it was suggested I have a test to see where that was coming from or have ovaries surgically removed. At this same time I developed a severe burning pain in the pelvic region. (This burning pain was similar to the same burning pain I experienced at the time of my breast cancer diagnosis, a year and a half earlier, that had occurred 10 days before I noticed a change in my nipple). I consulted with an gynocological oncologist and decided upon a complete abdominal hysterectomy with Salpingo-oopherectomy. (The testosterone level had been double normal but when re-tested went up to 6 times normal, although that may have been a lab error).
I had the hysterectomy one week after my last Herceptin treatment. (Interestingly, at my pre-op appt. for the hysterectomy I had a pap smear done. The results of that pap smear showed abnormal cells. It was the first time I ever had an abnormal pap smear).
Although I was told that I was "early stage," I think I was at a more advanced level. My oncologist had allowed me to have it out-of-protocol because, as he indicated in a report, my case seemed to meet special considerations. I don't think I was out-of-protocol. I strongly believe that I was stage IV at time of dx. and the private dr's whom we consulted with for 2nd opinions hinted at the same.
What I did notice was that my alkaline phosphatase level which had been slowly increasing made its most significant jump 3 mos. after I stopped the Herceptin and was only 6 pts above normal. My oncologist then allowed "prophylactic" Zometa at half dose every 3 mos. along with Doxycycyline and Celebrex. The alkaline phosphatase level stabilized and then slowly returned to what it had been at time of dx. which was half that level.

[Lani]

fascinating story! THE BIG QUESTION IS...which if any (or all) of the symptoms you attributed to herceptin disappeared after stopping herceptin and how long did it take? (and which persisted) Thanks again! Lani

(PSThose that didn't disappear might more likely be attributed to the Arimidex)

[Kaye]

My thoughts are that it was most likely the Arimidex which caused the side effects and not the Herceptin. The first pancreatitis attack occurred about 8 weeks after I started the Arimidex. I had already been on the Herceptin for 5 mos. by that time. Arimidex affects hormone levels which, in turn, can affect cholesterol. High cholesterol may be associated with pancreatitis. My cholesterol levels became high for the first time after I started Arimidex--and had lost a good amount of weight. (30+ lbs).
One private radiologist told us that he thought my enlarged retroperitoneal nodes may have been responsible for the pancreatitis. Perhaps the Arimidex had some play and was related to that as well.
I am not sure about becoming hypothyroid--that could have been from the radiation but do wonder if the pancreatitis could have caused some damage which caused it to develop.
Also, another thought--at same time thyroid became hypothyroid, my testosterone levels were high. Testosterone is also a hormone and there very well could be some relationship between that and the arimidex which affects estrogen levels.
However, in addition other tests were off, too--one liver enzyme--AST--oh, and my bilirubin count was elevated then as well.

[al from Canada]

If Genentech had a postmarketing surveillance system then they forgot to tell Roche because it never got to Canada.


Aside from the usual runney nose, waterly eyes and leg cramps; the one I would like to see more study on is the vision changes. Linda was practically blind, for what ever reason, in her distance vision. She couldn't even see faces in the TV; to the point where she either stopped watching or we buy a big-screen TV (we did the latter). Strangely, where she used to need reading glasses; she could now read without glasses.

Side effects aside, without herceptin........

Al

[sarah]

Herceptin every 3 weeks, 2nd year,
DCIS in 1999, recurrence invasive in 2003,
Taxol and Herceptin started March 2004, continue Herceptin
Femara started after chemo

side effects:
fatigue
cataracts - but was told probably the cortisone given with Taxol or the Taxol - still coping but eventually will have to do something about it
dry, sore nose
dry eyes and skin
skin rashes
split finger nails that never grow
cramps - somewhat helped with Magnesium B6
periodic head aches

all said and done, I don't feel my side effects are that bad - except the fatigue and the eyes, the others are just a nuisance that I cope with. I may look into the anti-fatigue pills mentioned.
I want to stay on Herceptin as long as my heart can take it. Maybe now that it will be given to more people, the price will come down a bit and that will help more people get it and be able to stay on it longer.
sarah

[RhondaH]

At the Genentech stockholders' meeting (I am not one) they were asked about their post-marketing surveillance and described their's (finding out what problems people were having with their drugs after clinical trials are over and they are being used by greater numbers of people--when more people take a drug, new problems are usually discovered which may be rare or only happen in a subgroup of patients). The Wall Street Journal had recently had an article on how drug companies often fail to do sufficient post-marketing surveillance as they are not motivated to do it (it doesn't increse "the bottom line" and may even hurt it) even though they are obliged by the FDA to do so.

Genentech answered that they have a postmarketing surveillance system which is an industry leader, setting an example for other companies. I am wondering if anyone on Herceptin has filled out any questionnaires for Genentech or if they are merely relying on the oncologists to pass on patients' complaints and problems. Particularly those who were on the trial--have you been contacted by Genentech. I have not filled out any questionnaires, I was not in the trial.

I propose that those who post her (and the lurkers, too) put in their two cents worth about their symptoms AND particularly whether they are on every week or every three weeks as nothing has been published on this as this is one big experiment (a wonderfully successful one!) I began every three weeks Herceptin 8/18/05 (last one will be 8/10/06) after my 1st 2-3 infusions, I developed a rash under my affected breast, but this eventually went away. My liver enzymes became raised so they switched to every week (this was after Thanksgiving prior to Christmas) which seemed to help, so my onc said that it would be safe to say the Herceptin "irritates my liver a little", but he let me go back on every 3 weeks as I didn't like going in every week. I also had bad sinuses, but that seems to have subsided, but the "fogginess" began and continues w/ Herceptin. My surgeon said "they say there are no side effects, but that isn't true" he had a patient on it who had a "wierd" feeling in her foot, he told her to stop it and she did and it went away. I was also , dizzy for a while (until Jan), but that TOO has gone away. I sometimes wonder if some side effects are "psychosomatic" as mine disappear when I have it tested...hmmm.

I propose you list whether you are on it for early bc(what stage) Stage 1 or Stage IV, how long you have been on it 8/15/05, when symptoms started, what symptoms you had that you didn't have on chemo, how long since chemo ended you started(and what chemo regimen you had) 5/18/05 (6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan), whether you are getting anything concurrently with Herceptin vs Herceptin alone Herceptin alone and if you had any other preexisting diseases or any other preexisting diseases for which you take regular or semiregular medication eg,heart problems, epilepsy 30mg Phenobarbitol, asthma, GI problems, etc--also whether the Herceptin problems caused you to stop for any period of time, take another medicine to reverse the problem Herceptin MAY have caused (eg. sleeping pills for insomnia, stomach pills for nausea, heart pills for heart failure, etc)

Feel free to list minor complaints such as nail cracking, skin cracking, nose dryness or nosebleeds, dry eyes,change in hair, and gas as well as nausea, diarrhea , shortness of breath or air hunger (the feeling of having difficulty being satisfied by the amount of air you inhale), swelling of hands and feet(change in ring size), minor sun sensitivity, rib pain, back pain or other bone pain, joint pain in hands and/or feet or other joint pain, etc. Please also list things under questionable such as weight gain, changes in vision or teeth, improvement or worsening of neurologic symptoms( whether brought on previously by chemo or otherwise), changes of mood ornery, difficulty finding words they totally escape me, increased hot flashes etc. Please alsor remember to list your ER status ER+ and whether you are pre/post menopausal though haven't had a period since 4/05 and if you are on Lupron shots and/or antihormonals concurrently with herceptin. If you are post-menopausal it would help to know for how long (ie,whether you were likely to be having hot flashes anyway etc)

I would hope that this "unscientific" study would be good enough to submit to Genentech so they can cross-check it with their industry-leading postmarketing surveillance. THEY HAVE A GREAT DRUG. Let's see if we can help them have GREAT INFORMATION available to those taking the drug as to what (hopefully) little problems they might expect. Obviously this is a scewed study, as those with no complaints won't reply (although I encourage them to!)

Thanking everyone who participates! (Please feel free to add new questions if I am certain I have forgotten some and certainly new symptoms or problems as I am sure there are many not listed)

Lani

Rhonda


And thats MY 2 cents worth

[Christine MH-UK]

I find it really odd that many people seem to be treated as hypochondriacs even for known side effects. According to the European official packet insert for herceptin, in addition to heart problems:

"Other very common side effects of Herceptin, occurring in more than 10 out of 100 patients, are:

diarrhoea, weakness, skin rashes, chest pain, abdominal pain, joint pain, and muscle pain.

Other common side effects of Herceptin, occurring in less than 10 out of 100 patients, are:

allergic reactions, abnormal blood counts (anaemia, low platelet count and low white blood count), constipation, heartburn (dyspepsia), infections, inflammation of the breast, inflammation of the pancreas or liver, kidney disorders, increased muscle tone /tension (hypertonia), tremor, numbness or tingling of the fingers and toes, nail disorders, hair loss, inability to sleep (insomnia), sleepiness somnolence), nose bleeds, acne, itchiness, dry mouth and skin, dry or watery eyes, sweating, feeling weak and unwell, anxiety, depression, abnormal thinking, loss of appetite, weight loss, altered taste, asthma, lung disorders, back pain, neck pain, bone pain, leg cramps, haemorrhoids, bruises and arthritis.
Some of the side effects you experience may be due to your underlying breast cancer. If you receive Herceptin in combination with chemotherapy, some of them may also be due to the chemotherapy.

If you experience any of the side effects mentioned in this leaflet or notice any side effects not mentioned in this leaflet, please inform your doctor or pharmacist."

http://www.emea.eu.int/humandocs/Hum.../herceptin.htm

My story: diagnosed 10/2003, 6 FEC 75, mastectomy, 4 * taxotere, radiotherapy, not able to start herceptin until quite late 10/2005, a year after radiotherapy. ER-/PR-, so no further medicine besides three-weekly herceptin. Had my last period right before I started herceptin, although I think that's coincidence.

I have had constipation, nail disorders, inability to sleep, dry skin, sweating, feeling weak, bone pain (in odd places like my toes), and haemorrhoids. Tend to get weird headaches/sinus problems during the few days after the infusion. There are a few ladies on herceptin where I get treated and they all have some symptoms. I am having increased difficulty concentrating, but that doesn't seem to be on the list of known side effects.

Still, I will stay on it until October, but I must admit I am counting the treatments.

[nancylove]

stage 2b, Her+++ er-/pr-
first dx in 2003, Dec.
had mascectomy, 8 rounds chemo
reconstruction
then whammo recurrance 2005 April,
11 months after chemo ended..
Herceptin was then approved for early stages HER2+++
I wonder if i had it the first time if i would have gotten
it the second time...
I had to go thru chemo (navelbine 18 rounds , radiation and got herceptin for the first time.
Side effects??
I have stomach problems, diarrhea the day before herceptin is due again, not due to nerves becuz i am not even thinkin about it
when i realize it is hitting me.
Then the day OF, i have stomach problems again.
sudden diarrhea.
WATERY EYES all this time, i look like im crying.
Also burny urine.
also, INSOMNIA!! now i know what is going on, i just didnt know why i cant sleep!
some weight gain but it might be chocolate after all??
I will end one year of herceptin in June.
Nancy Love

[julierene]

1. Joint Pain!!

2. Nose Bleeds - just drips right out sometimes 2 times a day.

3. Chest tightness - feels strange to take a deep breath

4. Sinus pressure and headaches

5. Diarrhea

6. Weight gain

7. Eyebrows won't grow back after chemo

8. Pimples - pretty consistently right after treatment
9. Very tired after treatment
10. Have trouble reading, I've really had to slow down


Stage 4, 2nd dose of 3-week Herceptin 6mg/kg, NED, 31 years old

[lucky4x]

Hi Ladies,
Haven't been here in a while...summer was a nice distraction.
I am 4th stage( Mets to lungs), 4 time survivor in 6 years. Bilaterals and reconstruction. Her2 pos...estr. neg. Grade 3.

Aug 2005 started Navelbine and Her2 and continued on Her2 ( Herceptin) indefinately. No real side effects except for fingers, and nails...dry, brittle, skin cracking etc. I had other side effects before I took myself off the steroids ( who needs it?)... I sure don't!

The steroids are given hand- in- hand with most Herceptin/ chemo treatments for nausea. Well I was not nauseated with Herceptin, so I asked them not to give it to me.

Bye -Bye to the other side-effects... no more bloating, weight-gain, mood swings, hot flashes, joint pain...etc etc..... it was all from the steroids!!

So now I only have the dry, sore fingertips, and dry hair, my fingernails rip and tear easily, and sometimes cramping in my calves. They suggest if I am ever nauseated ( which I am not), to use Gravol...so one time on a long car ride ( directly after treatment) I used NON-DROWSY ( GINGERROOT) Gravol. It worked.

If those are now my only side-effects...I can live with that.

Those of you on straight Herceptin might want to ask your chemo nurses or onc. about giving up the steroids... just try it.