Herceptin - Quick Side Effects Poll
Comments
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Thanks for the info Paulamati!
That's interesting because perindopril is a similar drug to the one my onc. put me to bring my EF back up. When my ef dropped to 51 (from 65) he put me on enalapril (aka vasotec), and my ef went back up to the lower 60s. I'm just on a small dose and have had no side effects from it. I haven't heard of too many others being put on a med for their ef, that's why I was so curious about the study.
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Readingmama and TMarina thanks for the info on deporting. I now know what that little tube is that I have seen in patients in the clinic. I'm fortunate in that I go once every 3 weeks, give a blood sample and if all OK the nurse inserts a canula and gives me the HER infusion. Also as the nurses say I have "very good veins." I seem to be fortunate in that I have virtually no SEs - certainly no aches or pains. I had dose #11 last Thursday. I used to be on a Wednesday however I am now receiving Home Treatment so a nurse comes to my home on a Thursday to give the dose - much more civilised than going to the clinic lol. I'm not house bound in fact I am attending my office each day. The clinic is bursting at the seams.
Grace you are right about "Living Proof" It was a made for TV movie about the development of Herceptin and Dr Denis Slamon who was heavily involved in its development. He was in Dublin last November and I attended the talk he gave and spoke with him afterwards. We were also staying in the same hotel so spoke to him again the next morning. There is also a book called
Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer about the development of Herceptin - which I have. You can buy it on Amazon.
Cyndia thank you for saying what you said about Ireland but as some GI stationed here during WW2 is allegded to have said - "Nice country pity they forgot to put a roof on it" lol Have you ever visited?
take care all
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Frank, I visited Ireland once, on my honeymoon, a long time ago. Would love to get back and visit again. I think it did rain at least a little bit of every day we were there though. I guess that is how it stays so green. What I thought was the best thing about Ireland, though, was the people. Sorry, but the food, not so much. LOL
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Finished with chemo the last week of April and have been continuing with herceptin ever since. Just started triple doses four weeks ago and really can't tell what the side effects are. I get tired but I also am not able to get the best sleep at night (even before the BC diagnosis). I'm not having any joint pains or runny nose episodes. I sometimes have a slight cough and I do notice my nails are much softer than usual and are breaking low--well into the nail bed but that really would have to be my biggest "complaint". After all the side effects of chemo, having the herceptin infusions has not really given me many problems at all and I'm not sure if what I'm experiencing is directly related to it..
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Have to jump in here...looked this thread up to see if everyones SE's were the same as mine. I get about a weeks worth of the big D after my herceptin, lots of immodium for that week. Also get a huge headache the night of and day after but am aware of this and take some tylenol before infusion, and if I dont the nurses always ask and will offer me some. I also get these weird episodes where all of a sudden will feel dizzy and nauseated, where I will have to sit down and re-group, very random so dont know if it is residual from chemo or the herceptin. Still.... no comparison to chemo...and if it saves my life, then these are just little annoyances.
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I said earlier that I did have any side effects for herceptin. Not sure if that is true now or not. On weekly herceptin for three months, I had none, I had my third dose dense one with no benadryl or anything this last Tuesday. Then had surgery on Friday to restart my reconstruction.
Beginning Sunday, I ached all over randomly. Sometimes hip, sometimes back, ankle, knee, wrist of fingers. It was really bad yesterday (Wednesday) and then suddenly today, all is pretty much ok. I am hoping that it is just the herceptin and that it stays away now. It was more annoying than the soreness from the surgery!
I'm hoping that it is not Tamoxifen related because I will be on that a lot longer!
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fluff - How long was the dose dense infusion?0
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When I got my first one last Fri I asked them to speed it up so it ran in 60 minutes. Fri and Sat my knees ached like before I had surgery on them. I also had to do a couple of big power naps. I guess I will have to see if it the same after the next infusion. They offered me oral Benadryl and Tylenol. I refused the Benadryl because it makes me loopy.
I go on fridays so I had the weekend to sort it out. Surgery this past Monday and feel fine so watever it was passed quick
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I know I have mentioned this before but I'll say it again (hope no one is annoyed!) - I get a longer infusion, nearly 2 hours, and that helps me avoid any infusion related problems. Just realize that a slower infusion IS A CHOICE that you have and something you can try.
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Definitely true Omaz. I barge ahead with the mind over matter approach (and tylenol lol), but I don't want a 2 hr infusion.
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marjie - I kindof like being there now since it's quiet and cool and I have my laptop to work. The time goes by quick for me. I am coming up on my last infusion.0
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Marje, I think when I switch to the Herceptin only every three weeks I'm going to ask them for a slow infusion since the dose will be triple what I get now every week. The aches are from the herceptin. A lot of people have written about them. Also the faucet nose. Quite annoying. I need to buy stock in Kleenex or whoever owns Scott tisssues. LOL Probably not a good idea to buy any stock right now though.
Unless you have money to play with. That's not me. LOLI usually enjoy the time I spend with the infusions. I plug into Pandora on my iPhone and I knit or a read or a nap. I never get to do that uninterrupted at home. Ever. If the kids (grown, but still around) aren't popping up, it's the dog. Or the dog chasing the cats. Or the cats knocking things over to get my attention. I live in a circus. Wait, I think a circus would be more calm!
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Omaz - how many infusions did you have? I am just getting ready to return to work as well so the shorter infusions will be better for me. Never actually thought about it but it makes sense that I'd be getting a bigger dose on the 21 day schedule so I might have a little stronger SE's than those that are getting the weekly tx's.
Also, the chemo suite at my cancer centre is just way too cold for me and those lovely ladies handing out cookies would have me plumped up in no time flat, LOL!!
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marjie - herceptin x18! I have always done every 3 weeks, never got the weekly version. You are 1 year since dx tomorrow. Such a year, huh!
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I know! Can't believe it has been a year....actually my one year from dx was in July, but this month is my one year from surgery. Definitely a roller coaster ride I hope I don't have to take again!!
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marjie - you're right, I am still in July!0
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I am new to this site, and trying to find a place for myself! I have just had my last (out of 10) chemo treatments today! 4 a/c and 6 taxol each 2 weeks apart. Started herceptin 6/3 with the taxol and am doing that every 3 weeks til next June. When I have the herceptin alone, it is only a 30 minute infusion, and I have not had any side effects, at least that I attribute to the herceptin. (All my infusions are by port, in the chemo center at the hospital. )After reading these posts, though, I'm wondering if my aches & pains are caused by the herceptin, and not my age! And the headaches as well...you guys have got me thinking.....
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Hi Debbis - Congratulations on completing chemo!!! Check out the triple positive group.0
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debbis: Congrats on your graduation!
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Hi everyone- I've been following this site since February when I started Herceptin. Glad to know that m)y side effects are not imaginary. I am now almost 4 months post chemo (was allergic toPaclataxil, so was given Abraxane). Hair is still very short and poor texture. Am also on Arimidix for 5 years. I have fatigue and ?bad neuropathy in my feet and fingers. My feet are so bad, they are numb. I have fallen several times at night, due to this problem. Is this ever going to go away?
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Hi everyone, back from my first holiday since this nightmare began and am pleased to report it was a great success, no health problems which of course I dreaded and the cruise around the Greek islands ending in Turkey was beyond anything I could have imagined. I also went to see colleagues from work earlier in the month and was very warmly welcomed back. Some were just so loving and kept coming up to hug me. It felt so good after the miserable time I had on chemo and then to a lesser extent on Herceptin.
I am still getting side effects particularly in my joints. My arms are terrible in the mornings really stiff and worse if I have carried anything heavy in the previous day. The arm they used for the chemo and Herceptin is the worst. I also still lose my taste or am I imagining it I don't know !
I also tend to heal very slowly. I had a few scratches and bruises over the summer and thought they were slow to heal. I then had to have a tooth out and it took 3 weeks of pain before I was given antibiotics, just before the cruise, and luckily it went away. The dentist was surprised but I wasn't. The pain was terrible and I just dosed up on pain killers. I was determined to finish the antibiotics before the cruise as I would not have been able to drink alcohol at all.
I still get the fatigue and could hardly keep my eyes open on the journey home. I tend to have one week in four when I do not sleep well. Reminds me of pre menopause days. When I do sleep it is very deeply and for long periods, I find the fatigue the worst to deal with. Sometimes it is better to give in and then on other days exercise helps.
Back to reality now but I still enjoy each moment as I am sure we all do.
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I too feel a burning in my stomach ,I'm on my third herceptin I don't necessarily get diarreah but def a burning feeling and aching joints especially in my hands and tingling in my fingers.
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I've just had my 5th Herceptin towards the year and my nose and eyes are just running like crazy; my head feels full and I'm having trouble hearing; my hair is still growing in extremely slow plus I'm having problems with my nails. At least I should e able to isolate these se from the AI I'll start soon.
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Had my last Herceptin today!!! So excited!! Feeling very tired tonight, but trying to drink more water--I don't think I usually drink enough after. Don't need to see my onc again for 3 months! Yay!
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TMarina - WHOO HOOO!!! Congrats! Did they do anything special for you?
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Omaz--Thanks! No, not this time. I've finished chemo there twice (colon cancer and bc) and both times they gave me a certificate that they all signed and wrote little notes on. They didn't do that for the herceptin. They were all very nice though and congratulated me. They know what a long road it has been! They don't want to see me back except for port flushes!! My husband brought me flowers though
I think you're up next aren't you?
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TMarina - Next week Tuesday!0
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TMarina, Congrats! WooHoo! And how great to get flowers from your DH. It's great to be you today!
Good Luck next week Omaz!
Fitz33, I had my fifth Herceptin today too! (At least that is what the onc called it. She is counting the 3 weekly I had with Taxol as 1.) And my eyes are running like crazy too. No problems with my nose yet though. I had taxotere 3 weeks ago and was wondering why all of a sudden the Taxotears got worse. Didn't think of it being from Herceptin. My nails are in bad shape too. I don't think they'll fall off, but they look terrible.
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Hello, this is my first time on this thread. I was wondering about some of the things going on with my body so i decided to get some insight from you all.
I started chemo in March with cytoxan, taxol and herceptin. I've been on herceptin only for 11 weeks. My infusions are for 90 mins once every three weeks until March 2012.
I have the following SE: Really bad joint pain, the bottom of my feet hurt, small blisters on my fingers & toes, dry cough, fatigue 5-6 hours after herceptin treatments but back to normal the next day and very brittle nails to name a few.
I wasn't sure if these were SE from chemo or the herceptin since i started the herceptin in conjuction with the chemo but after reading some of your comments i'm beginning to think the are from the herceptin.
Congratulations to all who have finished or who are about to finish herceptin.
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Ado - Glad you had a good vacation. I think that is something I could use right now and I also think it should be mandatory!
I am now 5 month post herceptin and am still experiencing the fatigue and chemo brain. Lots of rest does help. I also notice my joints are still achy, particularily my knees. If I am able to walk on the treadmill I find it helps with the stiffness. Do you have ''jumpy legs' ... lol...(not sure what else to call it!) when laying down to sleep? That's something I've been experiencing alot of, as well as leg/muscle weakness, which I am going to adress this week with the Dr. 0
