Herceptin - Quick Side Effects Poll
Comments
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Omaz-
I haven't been feeling great the last few weeks. My last Herceptin had to be cancelled last week because my Muga results showed a 20% drop in the ejection fraction in the 8 weeks since the last study. It showed some heart toxcity too, which I guess is just another way to say heart damage.
It's been quite frustrating because I haven;t been comfortable with the weight gain, and I have been getting out of breath way to easily latley. I have tried exercising but I get winded so fast, and it's so unlike me.
Like most of us, I have too many things to do on a daily basis to add shortness of breath and chest pain to my list of side effects. My muscle cramps, mostly in my back and lower legs have increased too- they actually wake me up at night,
I hope I don't sound like I am complaining- I'm just frustrated.
Has anyone experienced any of these issues?
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Teckler - I am wondering if you should see a heart doctor to check on your heart. I don't know too much about it but have read that fluid gain can be related to lower heart function. TonLee started a thread that discusses heart issues and herceptin if you want to check it out - http://community.breastcancer.org/forum/69/topic/776430?page=6#idx_180.0
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Thanks Omaz
I think you might be right, and thanks for the link. I hope you have a wonderful day
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Tickler, I also had a 20 point drop in EF on herceptin. I saw a cardiologist and now take a beta blocker and ace inhibitor. I am sleeping and feeling better I think because of these. I am not retaining fluid yet, but it sounds like you are. It is a symptom of the reduced EF. If you are, they can give you a diuretic for that. Please join us on the herceptin heart attack thread. There are several of us with the same situation. (((hugs)))
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I just my last Herceptin (#18) last week - YAY!! Looking over the whole year, I think my SE's back in the beginning - which I contributed to Herceptin - were actually remnants of my "hard" chemo. Really for the last several months, I would maybe get some headaches, but usually was just super tired for a day or two.
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Teckler - I just received by sixth herceptin dose along with Taxol. Not sure which one causes it but I have had the muscle cramping at night and taking calcium, magnesium, and zinc (all in one pill) has really helped - My MO recommended it. I'm also having some shortness of breath and starting with some weight/water gain. Again, not sure if this is from the Taxol, herceptin, or the steroids....it's hard to tell. Wishing you well!!
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Congrats on finishing your Herceptin Marjie!!!! I just got a call from my onc to tell me that my last muga scan showed a drop so now I have to see a cardiologist before I can continue Herceptin. Now what happens I am so upset right now!!
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Kennylynne - I am sorry to hear about the drop. Have you checked out TonLee's Herceptin Heart Attack thread? They have a lot of great information there.0
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Has anyone experienced a rash while just on Herceptin? I was taking taxol and herceptin together for 12 week. Steriods and premeds during this time made the rash manageable. However, I've been off T/H for 9 weeks and have suffered so much with a rash from head to toe. My doctors are stumped (derm. did skin biopsy and said the rash is "chemically induced" but, he cannot tell me 100% that it is the chemo). I'm not starting the herceptin once every three weeks until rash calms down. If you have had a similiar reaction to T/H please tell me how long did the rash last and did you find anything that helped other than steriods (which I don't like taking), topical steriod cream and antihistimins.
Thank you. Patricia
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Thanks Omaz I will check it out
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just this week I had the 1st of 12 once a month Herceptin treatments and within 10 minutes of the drip starting I was freezing cold and 3 hours later when I got home I got in bed with a heating pad and was running a fever. Next morning only had diarrhea and 3 days later still have it. Hope it stops soon as I'm afraid to leave my house
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Hello ladies
I have some good news. Last Wednesday I received the results of my last CT Scan. The Scan showed that the tumours are the same size as before. That's the 3rd scan in a row where the tumours have remained the same size which means that the Herceptin is working. The Onc also discussed my last ECG and no worries there either. EF is holding at 50%. My Onc confirmed that I will be continuing with Herceptin for as long as it is working. last Thursday I received dose #19 and as I have said before I have almost no SEs
Teckler2/kennylynne my Onc also discussed heart probs with me last wednesday and said that in most instances if you are experiencing probs that the cardiologist will perscribe tablets rather than any major surgery. even went on to say that in some instances you can continue with the Herceptin whilst on the heart tabs.
Teckler2 I would agree with your Onc that after you finish chemo you are feeling much better so will have an improved apetite.
panamajayne an Onc nurse told me about patients of hers who got so cold during a herceptin infusion that their teeth started to chatter. apparently it's a known possible SE of Herceptin.
marjie congrats on finishing your course of herceptin.
kay1963 good news - the football season has started again lol.
take care all.
Frank
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Great news Frank!0
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Wonderful news Frank! It is great to hear that it's working. Good luck to your favorite football team this season too! Spring training will be starting here soon for baseball. Can't wait!
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Thanks Frank what is the cut off for herceptin with relation to ejection fractions???
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kennylynne my understading of EF is that the range 50% - 70(ish)% is the normal range. If it falls slightly below 50% it seems to depend on the Onc as to whether or not to refer the patient to a cardiologist. Any more than that and there will be a referal and I'm presuming that there will be a decision on whether or not to continue with Herceptin till the EF recitfys itself. Approaching 40% and alarm bells start ringing. My last ECG gave an EF of just about 50%, also showed up a "slightly lazy valve" but Onc said that the valve issue could even come about with age progression and I was neither being refered to a cardiologist nor being taken off Herceptin. As a matter of interest I don't think that MUGAs are carried out here - though I am open to correction on that.
Take care.
Frank
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kennylynne forgot to ask what part Canada are you in? "Big sis" lives in London Ontario. Was talking to her on the phone on Friday last. Her and I really will have to get skype of facetime installed on our PCs. Would save a fortune in phone bills ! ! LOL.
take care
Frank
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Kennylynne, the number is not set in stone, but below 50 some onc's will refer you, mine was 45 to 50 and I got referred. I think it also depends on how far it dropped. If it drops over 20 points, I think that is another reason for referral. So if you start at 60 and drop to 50, you might not get referred, but if you start at 70 and drop to 50, you might. I started at 65 and went to 45 to 50. So 65 to 45 was 20 points, that may be a part of it. I'm also going to a cancer center where the cardiologists are doing a study on the cardio toxicity of cancer txs, so that may have made them more likely to refer me as well. If you would feel more comfortable if a cardiologist would give you an opinion, can you ask your onc for a referral? I can't imagine they'd say no.
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Awesome News Frank!
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Patrithia, yes I got a rash after my first H after chemo. I know it was the H be cause the rash was on chest surrounding the port area. it was large red and papular. took about 2 weeks and 2 bottles of calamine to clear it up. Good Luck!
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marjie - congrats on finishing!!!
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Thanks! I am DONE DONE DONE!!! My port came out on Monday
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Congrats Marjie - That is awesome!!!!
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So happy for you marjie!!!0
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Congrats to all who are done with H! I was all set for my last herceptin, but my onc. saw that my EF went down from 75 to 65, so she said I didn't need the last dose. In her opinion, a 10 point drop wasn't good for me, but I think it's also because of the recent studies regarding 6-9 mos. of Herception possibly being just as effective as a full year. I hope she's right. I still have the drippy nose and weak fingernails from H, but I'm OK with those lingering side effects.....for now
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Joanne - Congrats to you on being done! I haven't seen the new data, did she tell you about it?0
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Congrats to the H ladies for crossing the finish line!!!!!
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Congratulations ladies! I still have to go until September.
Marjie-Did you need surgery to take the post out? What is the process?
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puce - it was a day surgery/procedure...like putting it in, I was sort of half conscious. Much easier coming out though than going in for sure!0
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Congrats to all those that finished!! 0
