Herceptin - Quick Side Effects Poll
Comments
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Elena--I would definitely want a consult with a cardiologist. Let us know how it all turns out! I have heard of others going back on Herceptin once their heart function came back up, but maybe their's didn't drop as low as yours. Being in good physical condition will probably make a big differnce in how well you recover. Good for you for keeping up the exercise!0
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Hi Isis,
DCIS I had is different from IDC. DCIS is confined to the ducts - can not break through the duct walls. With time though, as all cancers mutate frantically, some cells score the bingo and become invasive. Those invasive cells are now "Invasive Ductal Carcinoma" - which I had only microscopic traces.
HER2 is very invasive, it can metastasize even without showing in the lymph nodes. Every headache frightens the hell out of me, as herceptin can not reach the brain (which is the favourite area for HER2 mets - along with bones).... anyway, hope I scared you enough into taking that Herceptin.
Elena,
I was told the hearth damage from Herceptin is reversible (unlike with the Adriamicin) . I started running shortly after the chemo, while on Herceptin - but I overdid it and my legs got quite swollen. Now I run much less and do mostly elyptical cardio and all is fine.
Jenna0 -
I had my mastectomy a year ago in December and finished my chemo in June. I have herceptin until April, at least.
I have mild flu symptoms the first few days, chills and things. The second week I have an awful time with my joints - mainly the knees, fingers, and elbows. My feet have hurt ever since I started the Taxotere and that has never gone away. I am getting some energy back, but by 2 pm, I need to have all my work done for the day as I am worn out and just can't function! I know some of this might be caused by the Aromasin I take, but the flare up of the joint pain can only be the herceptin as it is cyclic to the infusion. I have not had the heart issues.
Elena- I would also encourage you to see a cardiologist.
Jenna - I'm with you! I struggle to keep my fears in check. I have an awful time with my short term memory - which use to be my strongest point!!!!
Well, thanks for all the input on here. It really does help that I am NOT alone!
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If the HER2+ can get into a lymph node with that tiny microinvasion, don't forget that it could also get into the blood vessels just as easily. Scary thought. That's what chemo is for though. We just can hope it did its job.
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weety - AMEN
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Thank you for asking about the rash. I took 24-hour Loratidin every day for a week before Herceptin and for 10 days after. I did not get a rash that time, but my arms still got itchy. I only had a 2-week dose that time. This last time I got a 3 week dose and I'm continuing the Loratidin. Within a few days of the infusion I developed a different kind of rash under my left armpit (I had the lumpectomy on the left side). The rash is round and about the size of a baseball, kind of red and lumpy. However, it doesn't itch, so it doesn't bother me. I'm keeping an eye on it.
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the only side affects i had during my herceptin treatment was a runny nose. That's it nothing else.
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Jenna I have quoted you below for the benefit of others who may have missed it:
'DCIS I had is different from IDC. DCIS is confined to the ducts - can not break through the duct walls. With time though, as all cancers mutate frantically, some cells score the bingo and become invasive. Those invasive cells are now "Invasive Ductal Carcinoma" - which I had only microscopic traces.
HER2 is very invasive, it can metastasize even without showing in the lymph nodes. Every headache frightens the hell out of me, as herceptin can not reach the brain (which is the favourite area for HER2 mets - along with bones).... anyway, hope I scared you enough into taking that Herceptin.'To answer you as to whether you scared me enough to take Herceptin--you did. Still I had a very bad time this cycle. Very bad. I had chills, stomach upset, high blood pressure. I was tired and weak all the time. Nauseous almost all the time. Go figure. Friday I decided not to take the Letrozole and I actually feel better. Wednesday I go again for I guess it will my 8th? (Got to count them.) In the meantime I'll talk to my onc. My radiation oncologist is of the opinion that just because you have Her2+ doesn't mean you have to freak out. The statistics she gave me of dying from cancer in 10 years were .08% chance. (Whatever that means.) She said that the radiation and the Herceptin is all I need. She didn't talk about Letrozole. I agree that some estrogen is necessary for your well being and I think that Letrozole is not for me.
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"as herceptin can not reach the brain (which is the favourite area for HER2 mets - along with bones"
I know herceptin can't break the brain blood barrier but I wasn't away that HER2+ favors mets to the brain. Do you have any links I can read? I mean it seems to be that HER2+ women do well on herceptin. While brain mets can happen I wonder if that happens after it has met to somewhere else like the bones or liver.
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I think that HER2+ tends to present itself more often in the brain BECAUSE of the fact that hercepitn does not reach the brain. I think herceptin has done such a good job in the rest of the body that in the majority of patients, the cancer is "cured" throughout the body. The only place that it cannot be "cured" by herceptin is the brain. I don't think it means that it literally goes there more often than other body parts. Probably the patients who end up with only brain mets would have had mets in other locations had herceptin not been given.
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Had my MUGA last Friday. Found out today that heart function dropped to 51 (started at 65, then went down to 59 after AC). Onc is putting me on a low dose of a high blood pressure med (even though my bp is fine). That is supposed to improve the heart function. If it doesn't work he said there are other things we can try before stopping Herceptin. My Potassium is a little high and the meds can make it go higher, so i will have to have my Potassium and creatinine tested weekly while on this med.
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Weety is right,
there is more incidence of HER2 brain metastases now because Herceptin does a great job in the rest of the body.
But, after reading so much about HER2 in the past year, I feel there is a difference in how HER2 spreads to the brain. I can not exactly remember the articles right now but, in the meantime, here is the one which shows that increase in brain metastases in women with HER2 is both due to effectiveness of Herceptin and a biological predisposition for HER2 tumors to metastasize to the CNS.
Look in the paragraph "What Accounts for the Apparent Increase in CNS Disease in Women with HER2-Positive Breast Cancer":
http://clincancerres.aacrjournals.org/content/13/6/1648.long0 -
My main side effect from the Herceptin is the joint pain. Finger joints seem to be the worst.
It gets better each day, and by the end of the 21 day cycle is almost gone, and then I get another treatment and it comes right back.
I have found that exercise - I do treadmill walking - helps with the lower joints.
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I'm chiming in late to a question many posts back about what we call Herceptin-- I call it chemo lite. I still go to oncology and sit in a chemo chair and get my port stabbed and sit there for two hours (I'm in a study and get Avastin, too), so it's chemo. But no Benadryl, no steroids, no miserable side effects.
Interesting to hear you all pipe up about nosebleeds. I've had those all year and was told it's the Avastin, not the Herceptin. But it appears many of you have them. They're not bad, just a sort of permanent bloody crustiness.
My joint pain is getting better slowly, which leads me to believe it was chemo residuals, not Herceptin. I have a terrible musice-spasm problem in my surgery-side arm, which might be related to the surgery; just had an MRI to see. I don't think it's Herceptin.
My effects have been pretty minor. My fingernails are for sh**. There's the nosebleed thing. I don't notice much else.
My eyebrows grew back and now have suddenly gotten thinner (I have always have good thick Irish eyebrows). I'm guessing maybe the Tamoxifen combined with natural menopause made worse by chemopause. But it's not bad.
So many drugs..... as long as they work, I'll try not to complain.
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Carboplatin - I read a source somewhere that said the carboplatin part of TCH can cross the blood-brain barrier, has anyone else heard that?0
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Gee that would be nice. Seems like the taxotere does otherwise why do have some slight neuropathy?
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lago - I think taxotere affects peripheral nerves outside the central nervous system. It can also affect 'ganglia' and autonomic nerves but doesn't *appear* to cross the bbb. The neurologist that I saw said that taxotere 'stabilizes' microtubules in the long extensions of the nerves that go from the spinal cord to the feet and hands. This somehow interferes with nerve function by clogging communication in the long nerve axons (or something like that!).
This is the link where I read about carboplatin, if you look at distribution it says yes for cross blood-brain barrier. This is the only place I saw it though and was wondering if anyone else came across this information.
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Hi ladies,
No more fatigue for me! Five weeks after my last herceptin (after a full year), I feel a surge of energy.
I was eternally tired this past year - usually completely exhausted by 5 pm. Now I feel like having a load taken off. Even the morning stiffness and achiness are not as bad as before.
I am still waking up at least once during the night though and my memory is not very reliable. Hair is coming slow ...
Jenna
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Hi Jenna - That is so good to know! I have a ways to go but that there is light and the hope to get rid of the achiness is good.0
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Yes, congratulations Jenna on the completion of your treatments. I'm still sticking with it although the SE are very debilitating for me. I have another treatment next Wednesday. Again like the last cycle I struggled with extreme fatigue, chills, heat--and recently I have been up every two hours at night accumulating over 32 ounces of urine. I don't think this is right since my last drink of (8 oz) water is at 6 pm. So I don't know why this is happening. I am also having difficulty walking since I already have peripheral neuropathy and have had it for years before this cancer invaded my body (also I have been previously paralyzed in a car accident and my lumber region 1-5 is extensively fused). It occurred to me that perhaps Herceptin was aggravating my situation and the recent posts above referring to neuropathy suggest to me that perhaps it is. You ladies are way ahead of me with your "carboplatin" and "taxotere" I'll have to look these up to find out what you are talking about. Is the joint damage permanent? Does anyone know?
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isis - Taxotere and carboplatin are chemo medications sometimes combined with herceptin into what is called TCH. Usually this is prescribed for 6 cycles 3 weeks apart. Is that what you are doing? The taxotere can cause peripheral neuropathy. It can be temporary and resolve between treatments or it can be more of a problem.0
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Thank you Omaz. I have no idea what may be in my "cocktail". But Monday when I see my doctor I will ask him what combination of drugs I am getting. I thought I was just getting Herceptin. One of my major faults is not asking the right questions. This forum is really educating me. I owe a great debt to all the participants.
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isis - Technically herceptin *shouldn't* cause too much trouble but that being said if there is one true thing about breast cancer treatment it is that each person's experience is unique! I had spinal surgery in 1996 and my neuropathy is worse (from the taxotere onc said) in the area already affected by that surgery. I will be interested in what you find out at your appointment.0
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There are SE to herceptin but most folks don't get them.
Most common SE for breast cancer are:
* Fever
* Nausea
* Vomiting
* Infusion reactions
* Diarrhea
* Infections
* Increased cough
* Headache
* Fatigue
* Shortness of breath
* Rash
* Low white and red blood cells
* Muscle painSource: http://www.herceptin.com/index.jsp
Check out the link ^ for more info.0 -
isis and lago - I didn't mean to say that herceptin doesn't have side effects just that when my onc nurse and the infusion nurses talk about it they always say 'you shouldn't have any problems' with a lot of confidence. I just had my first herceptin only infusion last week. I am still so close to the last chemo that I can't say if I had any SE or not. Thanks for the list (I think!) Lago!0
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Hi Isis,
the reaction to Herceptin (if there is any) usually happens at the time of first infusion and is allergy-like. It resolves with some anti-allergy treatment and after that, the body slowly gets used to it. The stress on the hearth continues though and it seems to be the main concern with Herceptin (but is reversible).
What I think is that your symptoms (even water retention) come from Letrozole. Letrozole eliminates estrogen in your body and stops the cancer, which needs estrogen to grow. You may find more about letrozole at Medline or, for example, here:
http://www.livestrong.com/article/112145-side-effects-femara/
Could your oncologist switch you to some other AI or even Tamoxifen?
At the same time, the lack of estrogen causes joint pain and stiffness and is most likely adding to your existing problems with the lumbar. I am sorry to hear you have to cope with such painfull and crippling side effects.
Jenna0 -
I have finished all the chemo and am on Herceptin. I take it every week, its been about 6 months, all echos have been good. I havent had any pulmonary test in awhile. I had always had a great lung capicity before, never out of breath going upstairs or walking and the treadmill was good too, even though I'm 60. I now noticed I get winded on steps or walk to fast and if I take more than 1 deep breath I get dizzy. I hate being breathless so easy. It makes me sad because I was so strong before. I also get tired a lot more easily..sleepy tired. I also have heart palpatations and body aches. I cant say if its left over chemo symptoms or what but the body aches are still there..Good luck to all. I guess Im lucky I can still take it (Herceptin) its suppose to give you better odds??God Bless....Elena
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Hi everyone: This is what I found out from my doctor. The Herceptin I get is pure Herceptin nothing more is in it. I checked it out when I went for my infusion last week (just to make sure it was pure). He is adament about not prescribing Tamoxifin even though I said I would take the responsibility and sign off on it killing me. I had a deep thrombosis when I was paralyzed and he believes once you've had that happen it is more likely to happen again. So I am still on Letrozole given the fact that he says the alternate aromatose blocker works on the same principle. I am determined now to continue despite all my SE although they can reduce me to tears at times. I confess that I get into bed at 5:30 pm and just lie there and wait for the evening to pass. I spend most of my time in bed. But I am doing what I can in the 6 hours that I don't spend resting. Sometimes the fatigue is so great that I fall asleep sitting up. Still, I don't want to have to say "if only I had..." So Jenna my sweet friend I plan to struggle through. My muga tests are good so far but my walking is difficult and very tiring. However, there is hope. I plan to order a scooter in the spring. Hopefully that will allow me to be less of an invalid for the last part of my treatment. I am half way there. I've climbed the hill and soon will be seeing the light at the end of the tunnel. Hopefully not the eternal light. I'm not ready for that yet.
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Hello everyone,
I still read the posts to this thread as they helped me so much when I was going through treatment. I completed Herceptin in August 2009, so it's been over 16 months for me now and most side effects are long gone. It took the longest for the nasal issues to go away - I used and continue to use a nasal gel to keep the passages moist and avoid the crustiness.
For those of you still in treatment, I wish you well and hope all your side effects will be minimal and disappear when treatment is finished. Of course I still panic during my follow-up tests and seeing my doctor for results. My follow up is once every 6 months, alternating digitial mammograms and breast MRIs so I have one of each each year, but a status report every six months. Last year I thought I felt a lump in the same breast where I had the lumpectomy. Though my anxiety level was high, the biopsy indicated that it was just scar tissue. A sigh of relief for sure!
In many ways, the cancer still seems very recent. I rermember when I was in the middle of treatment and I couldn't wait to be 2 years out from it. Well, here I am and I can't wait to be 5 years out! Still, I haven't lost the new found real appreciation of life and celebrate each holiday with gratitude. I wish you all a speedy recovery from the side effects and long life cancer-free!
Gina
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Isis - Possibly you could try a different AI, in particular exemestane which works by a different mechanism than letrozole. They seem to have different SE's from what I have read and a different one may work better for you. All are equally effective as far as I know. I hope that you feel better.0
