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

[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.

[lucky4x]

Oops... ps...

The runny nose is gone too! It was also from the Decadron ( steroids).
The blurry vision started with 1st rounds of chemo way back in 2000... I think for me its just old age (49).

[lucky4x]

Sooooooooo sorry... one more PS............

Herceptin treatments... have been on straight Herceptin since Jan 2006. I dont ever want to go off it, heart is good ... AND LUNGS ARE CLEAR!!

[Yorkiegirl]

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



Never once did I ever have any steriods while on Herceptin. This is one drug they say doesn't need a steriod.

[lucky4x]

Hi.

I was told at my clinic that its "routine" to give steroids before/during the Herceptin... but that might be just here in Canada? I am not sure... but would be interested to find out because you are soooo right... you don't need it with Herceptin.

Thanks for responding.

Lucky

[tousled1]

Vicki,

I am on straight Herceptin -- no steroids -- no nothing except Herceptin. Only time I had steroids was as a pre-med with the Taxatore.

[Carina]

I went to see an allergist who specializes in desensitization to get people through chemo. He had not seen an herceptin allergy before but had heard of someone at Harvard who might have had some experience. Roche, the distributor for herceptin in Canada, have also shared some info. with my oncologist (2 cases) and hopefully this will give some insight into a strategy to be able to put me back on herceptin. So far lapatanib doesn't appear to be an option, even on compassionate grounds.

It is now over three weeks since Taxol and I haven't had herceptin since July 28th and I am still reacting. I was in Emergency last Friday in order to get the reaction under control. I am now on prednisone and benadry every 4 hours. I want to get off the prednisone as soon as possible but when I stopped taking it (after 5 days) the reaction came back by the 3rd day. I was really hoping that things would be a bit easier during the break between chemotherapy and radiation. Sigh...

Walked with my family and friends in a fundraiser for breast cancer reseach today. It was really good to be part of something positive and hopeful.

[dawbs]

I feel so lucky reading of everyone else's problems. I've only had 4 Herceptin/Taxol combos so far, but I am feeling better each week and have virtually no side effects. (Slightly bloody nose and occasional pimples only.)

However I did have quite a weird infusion reaction with the first Herceptin. About 45 minutes into it I started to feel cold and within 5 minutes was shivering. This escalated such that I was trembling all over, even my teeth, so I couldn't even talk without biting my tongue. It was rather like a grand mal seixure, except I was conscious and laughing...it was so weird. I also had aching up and down my spine, legs and into my neck and the pain was worst at the site of previously irradiated spine mets. My oxygen sats, blood pressure and pulse all starting fluctuating, but I had no trouble with breathing or temperature, and I otherwise felt fine.

My oncologist said this was a "tumour lysis" response, not an allergic reaction, and that this reaction can occur rarely in people with lung mets (which I also have), apparently due to cytokine release. The symtpoms settled over a period of 45 minutes or so, after being given dexamethasone and promethazine, and I was able to finish the infusion (only about 50 mls anyway). The next two times I had premeds first and no reaction, and last time had no premeds and still no problems.

I felt it was a blessing. I had a mental image of tumour cells being fried and zapped and felt so priviledged to be such a good responder.

Has anyone else ever heard of this reaction?

Vicki

[Bev]

Vikkis mom,

There is the FinnHer(sp?) study. They did it for 9 weeks with good results. Either search on this site or the www for more info. Best of luck to your daughter. BB

[dskdrive]

I Had The Same Reaction. I Am Stage 2 With No Mets That I Know Of. They Gave Me Benedryl And Tylenol And I Settled Down And Was Able To Finish The Infusion. I Have Now Finished One Year Of Herceptin And Have Been Cancer Free For Over Two Years Now.

[geraldine]

Hi Lani,

12th dec marks my 3rd year on Herceptin.. 2.5 yrs Herceptin only.

I was dx in 2001 after finding a lump on my left breast.. grade3...18/24 node pos. Had mastectomy followed by various chemo+ clinical trial + rads.

I was dx in 2003 with secondary b/c on the chest wall, same side and it was only then that I was told about Herceptin and that I met the criteria.

I have terrible itching on various parts of my body, especially on the scar. I suffer from sinus problems, weight gain, small ulcers on my tongue, eye sight deteriating ( my optician say my reading sight has not changed in 2 yrs but my distance has changed drastically, poor nails (allways pealing and breaking) and lately I have suffered severe cramping in my legs. I dont have headaches except for about 2-3 hrs after treatment. Last week I had the strangest feeling in my chest, just like a hundred needles stabbing. It only lasted about 10 secs. I will be going for an echo on fri, so hopefully I will find out, the reason..

I receive Herceptin every 3 weeks over a 1 hour infusion.

Hey I forgot to mention how scatty my brain is at times (this is an example) but I was putting that down to age (55 in jan)

Geraldine

[lucky4x]

Geraldine.

I was so happy to hear that you continue on Herceptin for 3 years. ( I know that sounds weird, but it gave me hope).

Leg cramps... I was told to increase my magnesium by taking mag/calcium vitamin and a multi vitamin with magnesium also. It has helped the cramps. I still get little ones in the mornings, but not the ones where you spring out of bed and try to shake or walk them off! Someone else told me she put a bar of natural soap in her bed by her feet... and it took care of the cramps for some strange reason! Worth a try.

The itching under arm on one of my scars is enough to send me through the roof! Funny... I never thought it might be Hercpetin...but ya, maybe it is!

I am also on one hour IV every 3 weeks. ( Going this Friday for onc checkup and chest xray and syma results and treatment).

Lucky