Herceptin - Quick Side Effects Poll
Hi,
This is a quick & easy resource for the people who are going to begin Herceptin and the people already on Herceptin. If you are looking for what others have experienced, this is the place.
If you are DONE with chemo (or else the side effects are too tangled), please briefly list your Herceptin side effects and state which ones are the worst and which ones are mild, whether they decreased or increased with treatment. If they were bad enough to stop herceptin, please note this. Also, if you found a remedy for any side effects, note this too.
Include how often you get the herceptin (every 3 weeks, etc.) and how long you have gotten your herceptin-only treatment.
Even if you are not sure which side effects are caused by which medication or left over from chemo, include them here anyway.
* Please only list Herceptin side effects for this thread - discussion of other issues in other threads, so people have an easy-to-read thread here! 
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Comments
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Previously I got taxol/herceptin weekly. I have now been on only herceptin for 23 weeks, at three week intervals. I also did radiation and then began hormonal therapy during this time. I have only six more herceptin treatments left in a 12-month total regime. I use a port.
About 1/2 hour after my herceptin - very drowsy and usually have someone drive me home.
Chills - First night I always get chills, sometimes they wake me up. Also get them during the day. The chills have lasted for a week, other times just for 2 days.
Nasal/cold symptoms - congestion and constant sniffling for about a week. Also nose bleeds sometimes and persistent nose sores.
Fatigue - lasts about a week, sometimes 14 days, but NOTHING like what I had on chemo.
Stomach - mild diarrhea for about 7-10 days, sometimes 14 days. No cramping/pain.
Misc. - hot flashes usually feel worse for a week after my herceptin, but could be unrelated.
Skin/Hair - Mild acne first 2 treatments, but that has so far disappeared. Nails have been thin since I began, not sure of the source. Eyebrows and eyelashes thinned about 18 weeks into my herceptin, but I have no way of knowing if this is from the past Taxol or even current tamoxifen.
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I just started Herceptin in December, after chemo, DD AC and T. I had horrible bone pain with the T.
Herceptin:
mild diarrhea for the first two days after.
Runny nose, constant
Acne first week after (and i have never had acne before)
Bone and Joint pain, in whole body, have an xray scheduled for this, but like i said, had very bad bone pain on Taxol, so not sure with this one.
Have my infussions every three weeks, number four tomorrow.
Laura
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I really get no side effects that I recognize of course I am only two months out from chemo so maybe I am just so relieved to feel better that I don't realize I am not 100%. I do get quite drowsy after treatment for 4-6 hours.
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I just finished 52 weekly infusions, concurrent with 6 TCH at the beginning.
The only side effects I have noticed have been: a drippy nose (almost constantly), suppressed blood counts, bone and joint pain.
None of these were significant enough to stop Herceptin, just enough to be noticeable. The low blood count impacted my life the most.
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Just finished Herceptin this month. Side effects were very minor. Mainly just drippy nose and a little cough occasionally.
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Finished TCH July 22 - have gotten Herceptin every 3 weeks since then. The only SE I can notice is the constantly dripping nose. My blood counts are almost all in the normal range now.
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I finished my chemo with Herceptin in June. I started just Herceptin every 3 weeks in July and had 9 treatments. After the last 2 treatments I noticed a burning feeling in my stomach. I don't know if it's from Herceptin or it is from something else. I'm going to have a colonoscopy and maybe at the same time they can look down from the mouth.
Pat
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I had 20 consecutive weeks of herceptin and chemo beginning last June and now get a triple dose infusion of just herceptin every 3 wks. Its a piece of cake compared to everything else I have been through. Yes to fatigue, runny nose and a little achy. Blood counts are recovering well and echo looks good.
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I had a year of weekly Herceptin, concurrent with 12 weekly Taxol at the beginning. I had no noticeable side effects from the Herceptin. This month I am 5 years NED!
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Same here...constant drippy nose and that is about it. I think everything else if from the Femara. By that I mean an acid stomach.
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Herceptin was every 3 weeks
Bloody nose, fatigue, and really thin and splitting nails (which haven't gotten better 6 months after finishing Herceptin) but that's a small price to pay for the good it may do
Oh yeah-almost forgot Ejection Fraction from MUGA went from 83% to 54% and then back up to 72%-maybe that's where the fatigue came from.
Now 6 months post H energy is coming back up and feeling great
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I've been on Herceptin alone since September - I get an infusion every 2 weeks. My side effects are drippy and sometimes bloody nose, slight fatigue, metalic taste in mouth, thin and splitting nails - and painful split skin near my thumb nail. Only a slight reduction in my muga scan - from 67 down to 63%. My year will be up this April - can't wait!
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I've been done with Herceptin since October. Had it every 3 weeks (with 6 cycles of TCH initially). Only SE on Herceptin was constantly runny nose. My nails are also a mess, but I assumed this is leftover SE from chemo.
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I've also posted on the other SE Herceptin thread - but since adding Herceptin to my usual cocktail, my nose is runny all the time (think leaky faucet) and the nostrils are red, raw and itchy. Nails are thin and split - but that's cumulative effect of chemo. I do Herceptin every other week. Don't know for how long.
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I finished my Herceptin Feb/2008. I had Herceptin together with my Taxol treatments (6 in total), and during rads, and then Herceptin alone. Altogether I was taking Herceptin for 1 year (every 3 weeks). The only side affects I suffered were a cough and I would feel like I had the flu. I also have splitting nails, but figured that was from the chemo (it's hard to tell which drug did which damage) I also have Neuropathy (from the Taxol).
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I Had Taxol and H for 12 consecutive weeks before surgery (lump) - now H only every 3 weeks - Load dose was Dec 18, Second tx was Jan 29. No additional problems to date.
Fatigue, hair is growing back, nails also growing,but very slowly. They had turned brownish and were half dead and very sensitive, as were toe nails - probably due to Taxol more than Herceptin. Neuropathy in ring and little finger, but could be result of past wrist reconstructive surgeries.
The drippy, stuffy nose is constant - like slowly dripping faucet and overnight "crusties" in nose.
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I received Herceptin every three weeks for one year. I did not do chemo. I almost always had bad diarrhea the next day. Became very fatigued which increased with more treatments. About halfway through, I was dragging myself around at work, and would fall into these wonderful deep sleeps anytime I sat down for a length of time.
I lost hair. Mostly around the hairline and the top of my head. Not bald, just very thinned out. I never thought I was a hairy person until I lost all the hair on my arms and even facial hair. Eyebrows and lashes also thinned out..
My skin would become ghostly pale about four or five days after herceptin, everyone commented. Those were also the days I was most fatigued. My fingernails have thinned and the skin around them cracks open and won't heal.
If I cut myself shaving there is hardly any blood, and it takes weeks for any cut to heal, because I can't seem to bleed enough to form a scab.
Other than those side effects which aren't the end of the world, I've made it through! Just finished 2 weeks ago. The worst part for me was having to work on the days I was so tired. I don't know why I didn't take off the time that was offered to me.
One more thing: My nose ran constantly. Not really enough to blow, it just came from my nose like water dripping out. Thin and cold and constant.
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Just a runny nose all the time for me.
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Finished herceptin a year ago. My side effects were: chills day of infusion, fatigue, drippy nose, joint pain, lack of appetite (on weekly dose, not a problem on the three week schedule), thin peeling finger and toe nails, peeling fingertips.
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I have 2 more Herceptins left after being on it 1 year. Runny nose, hip pain,splitting nails and rough cuticles. Also weight gain, despite exercise and watching what I eat. Will the weight go away?
Thank you.
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Oh my goodness, I finished Herceptin in June 2006 and had totally forgot about the runny nose!! I remember now, it was almost constant......
Other than that, no side effects.
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Hi! I see some old friends here.
This is a very reassuring read ....doctor says Herceptin has no side effects....as if I would stop taking it even if they were worse.
Finished TCH in mid October and have Herceptin until July. Finished radiation mid December. Started Arimidex 2nd week of January.
It's been hard to sort out what causes what.....I don't go anywhere now without a tissue. My feet and knees do hurt and I hobble around like a little old lady after being still even for a short time.I am really tired by the end of the day. Am trying to keep up with at least a mile/day walking.
Although I didn't really have mouth sores, I have them now -- don't see anyone else...is there anyone else? It's like my mouth is so dry that my cheeks stick to my teeth at night and I wake up with inflammation. Enough that my jaw hurts.They gave me a concoction of lidocaine, benadryl, and Maalox to swish around but things aren't healing.
My nails and cuticles are dry, thin, and splitting. I have nose bleeds for dramatic (comic?) relief at boring meetings. I'm hoping that this IS the Herceptin since there's an end to that. It's a bit discouraging to think of this much achiness going on for another 5 years -- but, considering the potential alternatives I can live with it.
Has anyone else seen a nutritionist for post-chemo dietary wisdom?
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Hi Ladies
Do any of you have low white counts while on Herceptin alone I havnt' had chemo (TC) since October, and my white counts dropped this last time before herceptin appt.
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Hi Bethany,
How nice to hear from you again! People have been asking for you on our old list.
I did see a nutritionist here at Mass General who specializes in breast cancer patients. She was helpful but it was important to come into the meeting with a number of specific questions about recommendations I got from various boards.
I have just finished rads (and thought about the John Wayne room exit) and am facing taking Famera next week. I want to walk everyday but the three feet of snow, rampant ice, and freezing temperatures (0-10 degrees) have prevented much exercise. I am starting "Gentle Strength Training" at the MGH owned health club today. It is an eight-week, ten-person program especially for cancer patients. I hope it will get me started and then the weather will improve for walking. During rads I developed a shoulder problem and the PT told me that exercise helps the joints when taking anti-estrogen drugs.
For mouth sores, our local pharm. makes his own mouth wash which a number of people have told me really works (in fact it was mentioned in the local paper). You might try talking with some pharm. in your area. Sometimes they are ahead of the M.D.s on symptom control. Mine has been very helpful.
I am so happy to have found you again on the boards.
Best wishes,
Jo Anne
mmm5,
My white blood counts just went down (during rads) which my doctor attributed to an after effect of chemo. I too haven't had chemo since Oct. Did you have the shots after each infusion to increase white blood cells? I understand it can take sometime for your body to adjust to producing white blood cells on its own.
Jo Anne
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Finished 12 mths of Herceptin every 3 weeks, Dec 08. SE's included fatigue (espeically the last 2 months), diarrhea for about 3-4 days after treatment. My eyebrows are quite patchy and very thin and the hair on the top of my head is also very thin, I've put this down to the chemo prior to herceptin (3 cycles of FEC and 3 Taxotere) although not sure if herceptin has inhibited full hair re-growth? It was interesting to read Juliesmithson also had hair thining issues while on herceptin and didn't receive chemo. Thanks for sharing your all your side effects!
Maeve
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Herceptin every 3 weeks for a year. Early sx were runny nose and diarhea. Later those disappeared. Later sx were bone and muscle pain in legs and hips.
Almost forgot, I had weight loss during Herceptin year. Soon as treatment ended, weight came back.
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HI JAP
I had the neulast shots after every chemo treatment, then my white counts seemed to start climbing back up at end of year they were in the 4's yesterday after 3 months they dropped back down to 3, very discouraging. Do they explain this, is it a sign of anything bad or just the body working hard to get back to normal.
Getting tired of health issues am so ready to move on and be done with all of this.
Whine Whine
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azsunn
You still had low blood counts after chemo while on Herceptin how low would they fall and did they ever start to come up, this has happened to me and is upsetting. THey keep saying its most likely not from Herceptin but my body still trying to recover from Chemo (TC) last one in October.
What were you told? I am in AZ too!
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Hi!
Ditto the runny nose. Not bad, just a bit annoying.
Vision blurred, like I had a film over my eyeballs, but that went away.
Dry skin and bad fingernails and toenails. Not sure if that was all the Herceptin or after effects from the chemo, or neither.
Big relief when I finished. Even bigger relief when I got my port out!!
GOOD LUCK and BEST WISHES to all-- you will make it through!!!!
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Hi,
I am very new at this, is the runny nose, splitting nails, and thinning hair side effects permanent? Or do they go away after a few months of finishing the treatment?
PdlC
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