Herceptin - Quick Side Effects Poll
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Hi,
If one has heart problems ie decreased ejection fraction, I thought that they automatically stop herceptin , albeit temporarily and then retest your heart a couple months later? I am debating whether to go ahead with angiogram which cardiologist has recommended. However my ekg, muga and stress echo and myocardial perfusion tests being off might just be due to herceptin and not due to coronary artery disease.(narrowing of arteries) Cardiologist said it is hard to tell unless you get the angiogam. What are others doing re getting tested, stopping herceptin, etc? This is scary .
Also my eyes continue to water and it is now 4 months since last taxotere and carboplatin Are others having this symptom, neuropathy in feet continues too. Has anyone had any luck with acupuncture? What has helped people who have gotten neuropathy? thanks for info
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Re ejection fraction, I am on low dose beta blocker and skipping one herceptin. I will get another echo in 5 weeks, if it hasn't improved by then I am not sure what the next plan is yet.
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1 week until my last Herceptin.
Christine - congrats on finishing!
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Ladies
Happy Thanksgiving to all of you in USA enjoy your special meal and hopefully you will spend some quality time with family.
Frank
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Happy Thanksgiving Everyone - have the greatest day ever!
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serenitywisdom--Herceptin isn't automatically stopped if the EF drops. I think it depends on how far your number drops. Mine dropped from 65 to 51. After I started the meds my onc. told me to watch for heart symptoms (shortness of breath, trouble breathing while lying on my back), and then we did a few MUGAs every 6 weeks, instead of 3 months. When my EF went back up I went back to MUGAs every 3 months, and stayed on the med until I was done with Herceptin. If my next MUGA would have shown another drop, I may have had to delay a Herceptin infusion. Often, oncs will give a person a break (if the EF drops too low) and then restart the Herceptin. The EF usually goes right back up after stopping Herceptin. Unfortunately, some do have more serious. longer lasting heart trouble after Adriamycin and Herceptin, but this is rare.
Do you have other symptoms, besides your EF dropping, that would make your cardiologist want to do further testing?
I have neuropathy, but can't offer any advice, as I haven't tried much to help it! My feet have been feeling like they have been burning lately, and when my husband gives me a foot massage with some massage oil it really seems to help. Other than that, I just put up with it. I'm pretty sure mine is permanent since it started 2 years ago with chemo for colon cancer, and got slightly worse with Taxol. Hope yours gets better!
Happy Thanksgiving everyone! I am thankful for Herceptin--wish I never needed it, but thankful it was available since I did need it!
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Tamarins, thanks for sharing your experience. My ef went to between 45 and 50 from 65, and I am taking a beta blocker (which I will be on until I finish herceptin, assuming I can get back to it) and skipping at least one infusion. Good to hear everything worked out for you. Was it coreg that you took? I am a little nervous because since I started taking it, I feel like i can feel my heart pounding in my chest, I am assuming it is from that and not the herceptin since that infusion was two and a half weeks ago. This is some scary stuff, really glad to hear everything worked out for you.
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My ejection fraction went from a 70 to just below 50. My oncologist didn't stop the Herceptin, however. Instead, he waited to see if my EF had or would plateau at 50. It did, so we continued treatment, and after finishing Herceptin in April, my EF bounced right back. Are you having other troublesome symptoms, Kay, like severe shortness of breath?
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Thank you for the story AnneMarie. I was not having any other symptoms from my heart, but am having a lot of joint pain from the herceptin. I did have pneumoniitis in May, but that was from taxol, not sure if that has anything to do with it or not. I am glad to hear your EF bounced back. How far were you into herceptin when they noted the difference? I just had #9 of 18.
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Hope you all had a good thanksgiving. My EF basically dropped about 18% so my onc delayed the herceptin. The first cardiologist I went to wants to do angiogram. I have appt with another cardiologist Dec 14 who I thinik knows about chemo/herceptin and impact on heart.. He has written research articles on it. My stress echo and myocardial perfusion test were abnormal but they can't figure out if I have underlying coronary heart disease or if this is being caused by herceptin. Meanwhile I am on beta blockers and baby aspirin and they told me not to do much exertion. Sigh, I really would like to exercise and have been gaining weight ever since I started chemo. They said it is probably due to steroids, the chemo and the thyroidectomy I had in Feb. Also I wonder if herceptin puts on weight and this can't be good for the heart. Have other peopel had problems with weight gain? Also curious, if any of you got referred for an angiogram? I don't really have any symptoms and I think I would rather just wait for 2 months and see if there is a change in the MUGA or stress echo but I will see what the other cardiologist has to say about that. Take care everyone and happy to hear that others who stopped herceptin bounced back. I was 7 months into treatment (had 5.5 months of TCH) when the tests started going off.
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Hi serenitywisdom. I did not have a stress echo or a myocardial perfusion test. The only thing besides the echo was an EKG and put me on a beta blocker, coreg. They haven't mentioned an angiogram either. I had adriamycin in addition to the herceptin. I have lost weight, but I am eating much better as well as exercising. It sounds like you're pretty frustrated. I don't blame you, I am as well. I hope a second opinion from a different cardiologist will ease your concerns. Mine actually is doing a study on cancer treatments cardiac toxicity, so she is very aware of the issues. Hang in there, it will get better for all of us.
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Hi there, Kay. I'm surprised they gave you adriamycin with the Herceptin, since the combination has a higher risk of cardiotoxicity than Herceptin by itself.
I had my echocardiograms every three months, starting with a baseline echocardiogram before I started treatment in March 2010. By the third echo, which was 6 months later, my EF had plummetted. The next echo, three months after that, so 9 months into treatment, indicated that my EF had stabalized, and it remained around 50 for the rest of my treatment. (My infusions were all 3 weeks apart.) I, too, had a lot of joint pain on Herceptin, mostly in my neck. I also had what I call the Herceptin cough. Only thing going on now is some kind of issue with ears/Eustachian tubes, and I'm 7 months out from my last infusion. Other than the Eustachian tube issues, all is well.
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Glad to hear all is pretty much well for you now. Hope the ears clear up soon too. I have thought about the adryamicin, and I know my onc is second guessing herself on it, but hindsight is 20/20. They wanted to be very aggressive with the chemo. I actually was scheduled to start on the adriamycin before the fish test results came back. I guess she could have thought about changing when they did. But I had one large tumor and two small tumors (one was near the chest wall) and some lymph nodes with cancer in it. And it was grade 3, I was healthy, had just turned48, and she thought it was the best option. She told me about the heart risks, but also said the damage would be reversible if it happened. And the truth is the adriamycin did do a good job of shrinking the tumors, so perhaps I needed it regardless.
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I also had adriamicin then Herceptin, but it was because I had an allergic reaction at my second infusion of TCH. Most docs would not choose that combination of treatment for the obvious heart implications, but sometimes it is the best option.
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I also had AC and then taxol with herceptin.
does anyone get nauseated from Herceptin? I have been on herceptin since April, first 12 weekly and now every three weeks. the last two times I haven't felt great afterwards. Right now I feel *horrible*. I should probably go home from work and curl up in a ball. Or under my desk?
I think I need to change to a simpler diet after Herceptin. Has anyone had luck with this?
thanks all! I guess I have only four left.
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lisa - My onc suggested that I slow the infusion (every 3 weeks) to 90-120 minutes and that helped a lot with my symptoms.
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I've been having a lot of heart palpitations. Anyone else? Everytime I tell the doctor, he doesn't think it's anything.
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Yes sometimes I get them as well but they don't last very long. A bit scary though!. Could be anxiety????
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Hi Ladies
I get dose #17 tomorrow.
Lisa never had any nausea after the Herceptin. In fact I will be back into my office on Friday as I am after each infusion of Herceptin. My diet has never featured in any discussions about Herceptin with either the Consultant Onc or the Onc nurse.
Southampton surely one of the very pertitent possibe SEs of Herceptin is some heart probs. That's why Herceptin receipients get an ECG every 3 months or in some cases in North America a MUGA. The main heart prob is that Herceptin can affect your heart's Ejection Fraction but as I have not experienced that I don't know what the symptoms are.
Take care all
Frank
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I am aware of the decrease in EF with Herceptin. My MO only orders an ECHO every 6 months. I am curious if it is from the Herceptin, or neuropathy causing electrical problems in the heart. Ugh. Too much to deal with!
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South - If I were to wager a guess I would say this from what I have read (but I am no expert!) - the heart muscle has HER2 protein on it and the herceptin could bind to that and in some people cause a problem similar to the way herceptin binds to the HER2 protein on the surface of any lurking cancer cells. But neuropathy could also affect the heart! I have neuropathy from the chemo but it has slowly slowly improved0
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Omaz, thank you. If I have them again today,I am going to call the doctor.
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I wonder, can anyone help me with this. I finished chemo 3 weeks agao and have now had my first Herceptin alone. 2 days later I have a horrible pain in my neck and shoulder/arm socket, not the surgery side. It kept me awake most of last night and this morning I can't lift my arm or bend my neck much. Anyone else have this? Thanks.
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I didn't experience anything like this. I would call you oncologist as soon as you can. Do you have a port? if so, is it on your port side?
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Grimbol, I've had the same thing. It is on my port side, but surely the port isn't going to cause joint pain.
I get IV Benadryl before the Herceptin. Does every MO do that? I can't stand the feeling, all day long, like a drugged couch potato. I am also a wee bit nauseous, but they insist it's not the Herceptin. I think it's the Benadryl!
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I used to get Benadryl before taxotere/herceptin treatments, but not since I am on herceptin alone. The Benadryl put me to sleep through the whole infusion, but when I woke up to leave, I had no more side effects after I woke up.
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Hi Everyone....Im an new to your group. My name is Elizabeth. Zelda is a household nickname :-)
I have received 2 Herceptin treatments alone. Am scheduled to have my 3rd next Tuesday the 20th. Since on Herceptin alone I have the following: Swelling in my legs, feet and hands. A terrible rash has developed on both of my arms. They itch and burn like crazy and seem to flare up most when i am not in motion....so at the end of the day when I am done with all my daily responsabilities and am exhausted.....my hot flashes seem to worsen at the end of the day when I am sitting and trying to rest as well so I do not know if there is a common denominator there???? I also have my finger nails seperating from my nail beds but I believe this was a side effect of taxotere - which I had 3 treatments of. I started on taxol but had to have that stopped as I developed neuropathy of the hands and feet and that is irreversible. They finished me out with my last 3 chemo treatments on taxotere with the herceptin. Tho chemo is over...I still have the fingernail issue and as stated above the neuropathy. I will continue on with the single administration of Herceptin every 3 weeks until August. I was supposed to begin taking tamoxifen and have had the prescription filled and sitting in my purse but have yet to begin taking it. I have read through the chat rooms here and have seen so many women with neurological side effects taking shape by the 6th week if not earlier and therefore have not had much interest in adding anymore BS onto my already difficult to deal with side effects. I will discuss my concerns with my onc for the tamoxifen but am sure I will not get very far with her as her goal is to get me to begin ingesting it. In the end....it will be my decision as to what I do with that. Depends on what she offers me for insight and truths. Radiation will begin for me in January as well, every day for 2 months and who the heck knows what that will bring on! I am 40 and no longer have familiararity of my body or how to accomodate it. I don't know about you all but I find this to be completely outstanding!!!!!! - complete sarcasim! So you all know.....if anyone has any issues with rashes I have a few things I've tried that I can offer. For Grimbol.....I too hadneck pain both during times of reg chemo as well as herceptin alone but I only seem to feel the pain in my skin. In other words...to touch my skin in those areas is painful. For Southhamptonmom....I recvd Benadryl only during chemo just like Kay1963. With Herceptin treatments alone I no longer recv it but I remember it and yes.....your looped up for the day and boy it hits ya fast when it drips in doesn't it? lol. I felt worthless for converstion with others in the infusion room. It was like I was drunk! lol
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Zelda, the benedryl hit me fast! The nurse would just say she was starting the benedryl, and I swear I was asleep before she finished the sentence. Wish I could sleep like that at night. Maybe I should try benedryl.
I still have neuropathy too. I finished taxotere in July and was better, but it came back again. My MO said maybe the cold weather did it. Something about nerves shrinking. She said since it got better before, she thinks it will again. I also had bad joint pain from herceptin and lowered EF. I have been on tamoxifen for 5 weeks and so far no neurologic effects, but it is causing lots of joint pain too. Other than the joint pain, I don't seem to be getting any side effects from the tamox.
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Hi Kay1963
I know! I wish I could sleep like that at night. I am lucky if I sleep everyother night. The hotflashes are just insane! Do you have those? I am uncertain of your age so......since I was diagnosed on my 40th bday....how bout that bday gift huh?...the chemo pushed me into the BIG change prematurely. Thanks for the info on the tamox. I am nervous since I have the feet and finger issues. I burn my hands all the time on the stove and oven! My eye sight sucks something royal too! I feel relatively good (not like when I was on harder chemo and would have a hard crash) but my millions of side effects make me feel like I should be in the "box"
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Kay1963, I forgot to mention.....I tired the Benadryl for the rashes on my arms and it's just not the same as what we all experience in the infusion room. Something to be said about getting ur meds intravenously!!!! It's a pretty direct hit when it's done that way. port or no port. By mouth from OTC just not the same. ha ha ha....just thought I'd comment on that for humor.
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