Herceptin - Quick Side Effects Poll
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Hello everyone. I was researching herceptin side effects when I found you. I am on the Nov 2009 Chemo start group also. I finished chemo in March(dc'd due to taxol side effects) and had my MX in April. I have been on herceptin only and have been developing joint pain/muscle cramps that are getting worse and worse. I have herceptin every 3 wks - I know this isn't from chemo because that was months ago. I hope it goes away as it is very debilitating especially with the neuropathy from the taxol.
Glad to hear others have it too
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I am having such bad joint pain that I am considering stopping the herceptin. The doctor says its not a common side effect but it seems to be when I read these boards.
I am supposed to continue until Dec. Does anyone know of anything to alleviate the joint pain?
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I am so greatfull to have found this site! I like many of you were told there were no side effect from herceptin by my doctor, after enduring taxotere, carboplatin, and herceptin x6 I have been on herceptin only for 8 mos. My Doctor told me today with just 2 treatments left that I no longer needed herceptin. I am devastated! Although I have experianced many side effects fatigue that lasted for 12-14 days, thin brittle nails, a running nose I can't seem to catch! But by far for me was the muscle, hip and joint pain. As far as the pain relife I don't know.
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I discussed with my Onco at last herceptin Tx about joint pain...she said it was due to Chemo/Taxol Treatments mainly. She gave me a prescription for Motrin 500m as she said it would help , which it has but I dont like taking meds but somedays I will take ONE...some mornings I feel like old when I first get out of bed or sit at desk at work too long. I really believe its Herceptin that causes the pain from all the feedback on here. I am having a bone Density test done before my test herceptin Tx. I will go until Jan.
MBarrett why did Dr. say you no longer needed herceptin ?
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I am also having joint and muscle pain BUT I had issues with that a few years before so don't know if it is being caused by the Herceptin or just return of the original joint problems. When I first started having joint problems I learned a few things. One - if a joint starts hurting, pay attention to that hurt and don't aggravate it. Two - the pain is caused by inflamation so any anti-inflamation med helps (I find Aleve the best non-prescription - Tylenol is not an anti-inflamatory). Three - Celebrex is a miracle drug and really works in getting rid of the inflamation, which in turn gets rid of the pain. Requires a RX and is expensive but it does work. My Onc said was fine to take in conjunction with Herceptin.
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I asked my oncologist about the joint pain in my hips, knees etc a couple of weeks ago. He told me it was not from herceptin but a "classic" symptom that occurs once we are forced into menopause due to chemo. He also said that age is a factor as well. Anybody else hearing this point of view?
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Just finished a year of Herceptin 3 weeks ago. I had it every week during the 12 weeks of chemo (had 4 txt of Taxotere/Cytoxan which ended Nov 09) and then every 3 weeks from Nov thru Aug (2010). I really didn't think I had any side effects, MUGA was excellent, but reading this may explain the sores in one nostril. I have attributed it to chemo drying everything out! But since Herceptin ended, my nose is feeling better, so I'm thinking that may have been a se. I really didn't notice any joint or muscle pain until I started femara. I was pretty miserable for about 3 months but the serious pain has subsided and ankles just take a while to get started after waking or sitting for long periods, then I'm fine. My onc also noted that this was due to fast, forced menopause (I was premenopausal at 55). My onc has also said that studies are showing it may not be necessary for a full year of Herceptin. I know one sister said she's been on it 7 years & that may be due to being stage 4. I'm just glad I tolerated it well....I consider it my insurance policy! Blessings to all!
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shadow 2356-wow, you just have a few more months left. That is fantastic. If i was in your situation, I think I would load up on Motrin and try and get through. I have just heard so many awesome stories about success with Herceptin that I would try and give it everything. But, you and only you can make that decision. Best to you.
V
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i have recently finished a years treatment of herceptin and have finished all my treatment, no more drugs, hospital checkup once a year for mamagram.would like to hear from other women who have finished their treatment.i am just worried about recourance. thanks.
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Hi Trisha,
I don't write here often anymore, but I do have any new messages to this thread come through to my email as I like to stay in touch with the group that was so helpful while I was undergoing treatment. I finished my year of Herceptin in July 2009. I'm being followed by my surgeon with an MRI and a mammogram yearly (alternating - one of these each six months). So far, so good. I did have one concern - but a biopsy indicated that it was a buildup of scar tissue at my lumpectomy site. Otherwise, all is good. I too worry about recurrence and as I read more literature, I can't help worrying about ovarian cancer also (or anything else!). I just try to keep calm and get my annual medical exams with my GP and my regular monitoring with the mammograms and MRI.
I had some blood work done before my annual medical (which is this Friday) and the office called to say something was abnormal, but of course wouldn't tell me anything on the phone, so I'll find out on Friday. I'm not too worried, as I think the chemo has had lots of subtle and not so subtle long term effects on my body; and besides, the tests were routine blood and urine tests - no cancer screening. Last time they called me in for abnormal test results was last year, when the results indicated I had "borderline" levels of Vitamin D. Still, all that we went through probably predisposes us to worry.
Gina
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hi gina,thanks for repling to my message.i wont have any mri scans just mamagrams,also not sure about blood tests. i had a mascetomy and im full of scare tissue too.i thought ovarian cancer was more common if you have a hormone breat cancer not protein?? my periods have returned by oncologist wasnt too bothered about it.im not on any hormones or anything.its good to talk to someone i feel very isolated.
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I am interested in the SOLD study. I too am on Herceptin for a year having had 5 treatments so far. My symptoms and complaints are essentially the same as those I have read. Extreme tiredness which I cope with by resting a lot during the day and spending many hours in bed at night watching mindless tv. I'm just to tired too read or go out. I have one good week (the last one out of three) and then "they" hit me again!
My question is: Who and how was it determined that one year is the appropriate time period for treatment with Herceptin? Should otherwise healthy people, at Stage 1, having had a lumpectomy, chemo, radiation, be subjecting themselves to possible permanent damage to their hearts not to mention other vital organs? I am going through with this Herceptin treatment until I find that I cannot tolerate it any more or my heart ejection rate falls below 50. I stopped Chemo after 2 treatments because the radiation oncologist told me I needed only radiation and Herceptin. It seems that my team didn't agree on my treatment.This was my preference in the beginning of all this but I live in Canada and the rule here is chemo first or no Herceptin unless you want to fork out $45,000.
How does one calculate for quality of life? I read in this forum that Herceptin works for only 50% of the people who get it so 50% of us get no benefits. Do we all think we will fall into the 50% who will benefit? It didn't work for my friend. She got breast cancer again after a year and went through the whole rigmarole again. Please keep us informed Mona about the SOLD study you are participating in and I shall try to find information on it on the net. Taking a potent monoclonal treatment still subject to trials is scary stuff and maybe some of us in early stages shouldn't be on it.
Diagnosed: 2010/04/21, 1.8cm, Stage I, Grade III, 0/3 nodes ER+/PR+, HER 2+
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Hello Isis,
I think there are no absolutes in terms of treatment and remission or cure. But one thing I belive is that you have to believe in what you decide to do. We never have to accept the treatment that is proposed for us - we make the assumption that the treatment team has considered our indivudal cases as well as the most current literature in suggesting the treatment - then it's up to us to accept or reject it. Some want to go through the treatment but can't because their bodies react so badly. others choose to not take any treatment. Some choose mastectomy, others choose lumpectomy (for those of us who had the choice), etc..
You seem very angry. Can't say I blame you - the diagnosis itself is a bummer and none of the treatment options are fun. I too am Canadian and was told that Herceptin had to be given in conjunction with chemo. I chose to go with the suggested treatment (lumpectomy, chemo, radiation plus 1 year of Herceptin). I have a medical background and read the literature extensively before making my decisions. I know there is controversy as to acceptable treatments, but what they suggested seemed consistent with the literature to me at the time.
I had quite a bit of trouble with the chemo for the first round (you can read my experiences by looking at my old posts 2 years ago), but the dose was reduced and I made it through the rest. Herceptin did not give me too hard a time, but I have alwys been athletic and had great difficulty trying to do exercise that didn't tax my heart. However, my MUGAs indicated no problems. I got off Herceptin after my year in July 2009 and now just go for follow-up.
I think you would feel better if your team agreed on the treatment. I was very lucky as I was treated at the Tom Baker Cancer Centre by a fantastic team. I don't know if you can, but I think it might be helpful if you met with your team (or one of the team members you can relate to well) to discuss your concerns.
You know, all the way through treatment the important thing to me was to do everything I could to get rid of the cancer. I realized there may be long-term or permanent effects and probably a lot of unknown effects also of the treatment, but my priority was the cancer. I still have some side effects, but I think I would have made the same choice if I had known what was to come (in terms of effects of treatment).
Good luck,
Gina
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My oncologist is part of the UCLA team that came up with Herceptin, and he is very strong that it is a game-changer. Anecdotally, I've met about 5 women who had Herceptin 5 to 7 years ago-- early adopters. Every one of them is fine and has no recurrence.
I've had few side effects, though. It doesn't make me tired. My fingernails are very weak, but that could be residual chemo. Stiff muscles/joints, but that seems to be residual chemo. Some nosebleeds and other minor bleeding issues from the Avastin, which I'm also on.
Personally, I'm grateful for the drug, but then I've had it relatively easy.
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I finished one year of Herceptin a few weeks ago (YAY!). I always got a sore just inside my nose (on one or both sides) that would go away in time for the next treatment (once every three weeks) and other than that I can't say any SEs I've experienced were from Herceptin.... I have the joint pain and my ONC said the same as another recent poster: it's to do with chemo and early, forced menopause. She did say that for many women the joint pain goes away so here's hoping!
I too am grateful for this drug. I feel it far improves my chances of not having a recurrence. I have not seen a 50% number. I do know, though, that the research supports doing chemo with the Herceptin. My understanding is that the Herceptin is more effective (or the overall treatment is) when given with Chemo. The one year is, however, arbitrary. The original trials were done for one year so that is why one year is the standard (and that number was just chosen for the purpose of testing the drug -- not necessarily because they KNEW how long to give it). I have read that there are studies undertaken more recently that have found that less may be just as good as more... though I don't know how much less. It's still a relatively new treatment and not enough time has passed to be certain. Quite frankly, though, I was fine with having it for a year and now that it's done I do worry more. For me, DOING something feels better than not.
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www.herceptin.com Here is a website that lists the side effects of herceptin and there is even a link to the prescribing information, which is very interesting. I had my 8th weekly H yesterday, (will start every 3 weeks with next tx) and have been feeling very tired, and just generally "yucky". Yucky taste and slightly nauseated. All these se's are listed on the drug info, so why does my onc and even the nurses say there really aren't any se's with Herceptin? It's right there on the label! I bet the pharmacist would know more about it.
Thank you to all those posting who are finished. You are a wealth of info, and very helpful to us still in the thick of it!
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LOL Tina -- sometimes I think they say no SEs because they want to make us believe it enough that our bodies stop having them (or something like that). You know: out of sight, out of mind... but in this case it's out of mind, out of sight.
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I had really bad SE from the chemo (TCH), hospital twice from it BUT have now had nearly a year of Herceptin only and really no SE to speak of. From what I've read, Herceptin is somewhat of a miracle drug for those of us with HER2+. My Onc told me the survival % for those with HER2+ did a complete reverse - was 25% survival before H and after H the survival rate is about 75%. Isis818, could the SE you are experiencing be left over from chemo? I know it was a gradual return to ok after my last chemo (maybe 8 weeks) and all the while getting H every 3 weeks.0
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I have had no noticeable side effects with herceptin, been on it since May.
I am now at the "this is a huge pain in the butt, having to do this every three weeks for a few months yet...grr" stage.
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Aw Googs I know -- but it's so funny -- when I got to the end I got anxious... thinking: now what? There is comfort in having the Herceptin treatments... in knowing it is helping and protecting you.
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GoogsMN I feel all of this is a real PITA and I'm only through the 1st treatment. Can't wait till I'm done.
From what I hear most people do not have SE with Herceptin… but of course there are some that do. Any health care professional who doesn't pay attention to a patient who gets these is negligent IMO.
So far I don't think I'm getting any. I think my SE are from the chemo.
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To answer Lilylou, anything is possible. I agree with the others who all seem to have an onc who tells them no side effects. Herceptin for me is very disagreeable. Leaves me terribly weak and forces me to keep a calendar of what weeks I can expect to do things in in relative confidence. This for me is week 3 just before treatment again. So treatment 6 was today and I can expect two weeks of misery. Not great symptoms of any kind (yet) just an unwellness, lack of energy, and despondence--I won't talk about the hair. I need to rest most of the day and quite frankly I do. However this leaves me with a long time to go,12 more treatments, doing nothing very much. I envy the people who breeze through this with no obvious side effects. I am also on this anti-estrogen drug Letrozole which doesn't help matters since that leaves me hot, hot, hot. When you are pre-menopausal what drug do they give you to control estrogen?
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I am just curious, those of you who are having SE from Herceptin, has your onc given you the option of having the lower weekly dose instead of the triple-dose every 3 weeks? The weekly dose is an approved protocol but it appears that many (most) oncs don't even tell the patient that.
Logic would seem to dictate at least trying the lower dosage to see if your body reacts less dramatically to that than to the "triple-dose bomb" every 3 weeks. So I wonder if any of your oncs have suggested that?
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I am so happy to find this site because my onc continues to tell me that there are no side effects from Herceptin, other than the possible heart damage (which we are monitoring carefully). I am 56 and post-menopausal. I had 6 treatments of TCH (taxotere, carboplatnim, and Herceptin) every 3 weeks and finished the 6th one 3 months ago. Since then I've been on just the Herceptin every 2-3 weeks, depending on scheduling needs. Once chemo was over, but still on Herceptin, I developed a red, blotchy, itchy rash on my arms. I get it about midway between infusions. It lasts for about 5 days and goes away. My ocologist insists it has nothing to do with the Herceptin, but I don't believe it. When I was on TCH I took steroids before the infusions and never had a rash. Now I don't get the steroids, but I get the rash. Seems to me there is a link. I've tried antihistimines (pills and ointments), but they don't really help. Any one else with this situation?
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I also have s/e from the herceptin...chills, muscle aches, headache that never seems to go away, fatigue, etc. I told my Onc. this last week, and she ordered pre-meds for this. Just some tylenol and benydryll. I notice that it does help, especially with the headaches as they are not as severe now, but still there. But, I am thankful to recieve herceptin and so I will try manage the s/e now since I am on pre-meds.
She hasn't offered to lower the herceptin dosage by administering herceptin every week instead of every 3 weeks. With all the appointments I have booked for physio (LE) and trips into the city I think I'd rather try manage the way I am. For now at least.
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Here I am, replying to myself - hope it's of benefit to someone else. I visited my GP and to her it was obvious that the rash I get between Herceptin infusions is a reaction to the Herceptin. She suggested I try taking 24-hour antihistamines for 1 week before the infusion. This seems like a low risk, easy to do thing to try, so I will. Meanwhile, I've been using my radiation gel on the rash. It makes it feel much better, even if it doesn't make it go away. My onc and GP also talked, resulting in my onc contacting a specialist at Dana Farber in Boston. The specialist said a rash reaction is very unusual, but possible. However, not a reason to stop Herceptin treatment. I agree, the rash is annoying, but the probable benefit from Herceptin far outweighs the annoyance.
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Just wondering...has anyone experienced fever from herceptin?
kathyrd - hope your rash gets better - are the antihistamines helping? I am still amazed at how alot of Onc.'s insist there are no s/e from herceptin...
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I don't know what SE are from the Herceptin and what are from the Chemo (taxotere/carboplatin) but I do get nose bleeds. When I told my nurse practitioner that I was getting them and it was from the Herceptin she said she doubted it was from Herceptin. When I say my onc 2 weeks later she immediately said it was a SE from Herceptin and they don't know why it happens.
So until I finish chemo I won't know about other SE. From what I have read most people don't seem to get SE but as you can see there are some that do.
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Since I finished my last Herceptin on Sept 20 ... I find, interestingly, that a symptom that my ONC said "some people get from chemo" -- namely, achy joints or arthritis, is receding noticeably. One knee hurts still a little (but only sometimes and nowhere near as much); I fell on that knee over the summer and so the arthritis there was aggravated. The other knee is fine (where before it was bothering me some). My hands -- which were feeling tight at night and in the morning as if I had had a very salty dinner the night before -- are pretty much normal again (yay). I am SO relieved.
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Hello, I have just two more infusions of Heceptin left. I have been getting an infusion every three weeks for almost a year now. My first 4 rounds were accompanied by Taxotere and Carboplatin. I was unable to complete the intended 6 rounds of Taxotere and Carboplatin due to complications after surgery. But I have had no serious problems with Herceptin. I do have symptoms, though. I was very relieved to find this discussion board because my oncologist tells me Herceptin has few side effects except for decreased heart function, which he is monitoring closely. So far, I have had a 12% decrease in heart function.
My symptoms may be mild from a medical stand point, but they have significant emotional impact. I thought I was getting old, fat, arthritic, and whiney. This addds to my struggle with depression. But now I know I am experiencing the "mild" side effects. Fatigue and stiff, sore joints are the most bothersom after the decreased heart function. A slight asthma-like response after each infusion adds to the fatigue. I also have acne on my face and chest. All symptoms are getting worse with each infusion. I continue to gain weight slowly, despite a strict diet and exercise program. I'm not convinced whether the steriods from the first four rounds of Chemo are to blame or the Herceptin, or both. If I continue at the same rate, I will gain about 25 pounds before I am done with drug therapy.
Chemo therapy saved my life so far. I try not to complain too much. My prognosis is poor but there is hope thanks in part to Herceptin. I can't bear the thought of going through Chemo again after the cancer returns. I will worry that worry another day.
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