Herceptin - Quick Side Effects Poll
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michcon - I have 18 treatments now instead of 17 so I have 2 more to go. I just had another echo a couple weeks ago, number 4. I am holding steady at about 55%. I started at 73% but they thought that was high. did you schedule your port out?0
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Omaz - Yes, scheduled removing my Port on Aug 10. I can't wait to have it out of me.
I hope my heart is holding steady. So weird how in the beginning doctors are all over this disease with tests and now I feel like nobody is paying attention. Back to face down on my desk. When will the tired end?
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michcon - you'll have to tell me how it goes. My port-out is scheduled for Aug 29. Do you go to OR? I do. Wow, we're getting there!!!!!!!!!!!!!0
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Getting the Port out is the easy part! Yea Congratulations to those approaching the end of Herceptin and the great deporting!!
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Ado - congrats on being done!!!! and omaz and michcon, you are so close, hang in there!!
My bigtoenail fell off yesterday! Anyone heard of these as a side effect of H? I know it is much more likely to be due to the Taxol, but it seems very delayed as I had my last chemo in Jan., almost exactly 6 months ago. It was discolored for a while, not sure how long though. In a way, glad it fell off, maybe now it will grow in properly. too bad it had to be in the middle of the summer though, I'll have to wear a band-aid over it to not scare the kiddies at the pool!
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hillck - I was at 55% with last echo and they said that was fine. I started at 73% last summer.0
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hillck - I take naps now too. I will just fall asleep after dinner or sometimes when I get home from work. I figured it was because I am up a lot at night with hot flashes.0
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Hillck--When mine dropped from 65 to 51 my onc put me on a low dose of Enalapril, which is a blood pressure med. I don't have high bp, it's just for the heart function. My Ef went back up to 62. I never had to miss a Herceptin. For awhile I had to have a MUGA every 6 weeks, but when the EF went back up above 60 I was able to go back to having them every 3 months. I will stay on the Enalapril until I am done with H (2 more!). My onc told me if that drug didn't work, there were other meds we could try. He knew I didn't want to have any delays! I'm so glad this drug worked, and I haven't had any SEs from it.
I find the more tx I get, the more tired I get! The fatigue is worse on the day of than when I started, and lasts a few days more also. I have also been having a little nausea on the day I get the H also. Oh well, I'm almost done!
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My first H (by itself) was on Feb. 14/10. My last dose (#16 - then doc opted not to do the last 2) was on June 8/11 - 18 months later. I was told that it was not unusual to take breaks with H, as long as you get all, or most, of them in. My EF always wavered around the 51 mark - went as low as 48 at one point. We want to get this over with asap, and I wasn't pleased that it took so long for me to get 16 tx in, but before you know it, it's over and onward we march!
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Cindy, glad I'm not alone in having it fall off so late! Sorry about the month break, mentally it would definately be an adjustment so close to the end! Huggs
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Hi Ladies, so happy I found this thread. I started Herceptin in October 2010 and am supposed to finish October of this year. I had a starting ejection fraction rate of 59% after 4 dd txs of A/C and before starting Herceptin in October in conjunction with Taxol. Went for MUGA #2 in April and my EF had dropped down to 49% with shortness of breath. They stopped the Herceptin and I had a repeat MUGA a month later. My EF went down again to 47% but we decided to resume anyhow and scheduled an echo for a month later. I love the way my doc put it, "a little bit of heart failure is better than the cancer coming back." My echo showed that my EF went back up to between 50 and 55%. I think it's very possible that my heart function went down so much from the A/C even after I had stopped it and is now finally on the rebound from it.
Additionally, after reading this thread it has put my mind at ease a bit regarding joint pain. I have a bone scan scheduled for this Wednesday due to pain in my lower back and hips. My doc keeps telling me that the pain isn't a long term effect from the chemo and I he never mentioned that it could be caused by the Herceptin. In any event, the bone scan will ultimately tell what's going on if anything and now after reading this I am a lot less scared that it's mets.
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Hello all
Got #10 last Wednesday. My Onc said that I will be on herceptin for 18 months or until it stops working, whichever comes first. I started in January so will be on H until June of next year. I'm fortunate that I have very few SEs. I do have extremely brittle nails. I would hardly touch them against something and they will chip. My toe naile are weird looking though not very brittle. My hair is a bit thin and lifeless but then there are men who would love to have even thin and lifeless hair lol. Nose a bit runny as well.
I have been offered home treatment. I would go to the hospital on Tuesday morning at 8 00am to give a blood sample. I will get a phone assessment from a nurse on the Wednesday and if bloods and assessment are OK then a nurse will come to my home on Thursday to administer the H. Two out of three treatments will be at home but the 3rd has to be in the hospital so that there can be a face to face with the Onc. I think the home treatments are given because the clinic is bursting at the seams. Though I would have thought that home treatment would be reserved to those with mobility probs. I live up the road from the hospital and go about my every day life.
Ado congrats on finishing. treat yourself to that champers and go on that cruise.
I'm told that there is now a 2nd person in NI receiving H who did not have BC. Obviously the hospital will not tell me who it is. I would love to chat to whoever it is.
As a matter of interest (and some of you are saying that you are not lol) it is my custom to light a candle before mass and to pray that I will beat this little cancer problem. Yesterday I included in that prayer a couple of other people plus those on this thread and another thread on here.
take care all
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Frank,
The hospital can not tell you who the other patient is, but if you give them permission, they can pass on your information the the other person. Perhaps just your email address so you can remain a bit anonymous . Then the other person can email you if they wish to have some contact.
Christine0 -
I also am noticing that I am more tired the day of tx and for a few days after Herceptin. I am also noticing headaches too. I'm about halfway through 18 treatments so I hope it doesn't get too difficult as I am returning to work in September.
My MUGA scans have been good but as a precaution my onc sent me to a cardiologist for an ECHO. Although all looks good, my cardiologist has suggested that I don't have any more MUGA scans but he wants an ECHO after each tx moving forward.
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marjie - nice picture!!0
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marjie I have mentioned this before on here but in NI I have never heard of any one receiving a MUGA. In fact I never heard of a MUGA till I discovered this site. However before I started herceptin I had an Echo Cardiogram as a base line. I am scheduled for one - an Echo - every 3 months. My Onc maintains that the only SE you have to worry about with herceptin is a heart problem. Though I definitely have very brittle nails and thin hair. As i said before I have sometimes a runny nose but I do tend to be a bit nassasly especially at this time of year.
My sis who lives in London On is coming home in September for a few weeks. Although after all this time I suppose Canada is really her home.
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Frank - what a small world it is!0
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I'm sitting at my last Herceptin right now! I didn't think this day would come. Crazy how fast a year goes by. Deporting Aug 17 (had to move it due to work) and then I can really celebrate!
Is it weird that I'm nervous to be out of treatment after looking forward to it for so long?
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Michcon - I am heading in for number 17 today, then 18 and deport if all goes well. I feel the same way! I have been so looking forward to finishing and now actually feel kindof nervous about getting my port out and saying done (except for tam). Congrats on finishing!!!!!0
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I'm so glad to have found this.. I'm starting herceptin monday and it's good to know what side effects people are getting more than others... like the drippy nose, how quickly do side effects start after the herceptin? Is it that day or does it take a while?
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omaz!! congratulations0
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Michcon...CONGRATULATIONS!!!! Being done with Herceptin is a real milestone! Hope your 'deportation' goes well. I still have that part to go. Hoping for September.
Omaz...soon you'll be done. Hooray!
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I went in yesterday for Herceptin infusion #14, so I will be done October 24th. Can't wait, but then again will feel kind of anxious......Herceptin is my security blanket. The only side effect so far is a drippy nose that seems to be worse the first week then tapers off. I have been able to run, bike, etc. without any problems at all. I think all the joint issues I am having are from Arimidex, but will know in a couple of weeks. Onc said yesterday not to take any for two weeks and see if joint stiffness goes away.
Congratulations Michcon and Omaz!!
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Frank: Dia dhuit!!!! (Grew up in Galway, Gaeltacht area, went to UCG, lots of Northern friends). Don't know whether it's Herceptin or just Taxol. I do have neuropathy issues, fingers and bottoms of feet. I have to assume that's the Taxol. As to the Herceptin, racing heart (three times so far) and runny nose seem to be it for side effects.
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Congratulations Michcon!!
I'm getting close--the 15th is my last one! I am soooo ready to be DONE! Not sure when I'll "deport". If I still have to have CT scans every 6 months (for colon cancer), I just might keep it for awhile. Mine doesn't bother me at all--I've already had it over 2 years. For sure I'll wait until after my last MUGA (I'm assuming I'll have one more after H is done?). I hate that I can only use one arm for infusions and blood draws, and the veins in that arm aren't very good.
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Michon and omaz congratulations!!!! I'm sitting having my 12th herceptin right now. Time for you guys to do the happy dance:))
Christine0 -
HI All, I hope you don't mind me jumping in like this. I was diagnosed in March, had a lumpectomy April 15 followed by 4 rounds of Chemo. I am now scheduled to start radiation in late August and herceptin this coming Friday (my last chemo was two weeks ago today). The thing is that while can handle the rad (there is a definite end in sight) I am wondering why it is so important to do the herceptin. What I really want at this point is to stop feeling sick, start getting strong, and start having a normal life again (as much as possible). From the tiny bit of research I have done, herceptin seems to be for people with metastatic cancer or early stagers who are HER-neu positive. What score is considered postive? Mine is 2.7. I see my Onc on Friday just before the herceptin is supposed to start, but I want to make sure it is really essential for me to do before I go ahead. (I also REALLY want to get this port out). Can anyone shed some light on why I should do herceptin and what is considered a HER-neu positive score? Thanks so much
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Cyndia - Welcome! Herceptin is a monoclonal antibody that will help the body kill any cancer cells that might have escaped from the breast. Is the 2.7 from FISH? I was told that any positive is positive meaning it didn't matter how big the number was only that it was above the cutoff for positivity.
I just wanted to say (again) that the slower infusion time (2 hours) really helps me. If any of you are having trouble with Herceptin, try the slower infusion if you haven't already. I just had 17 today and so far the slowness is working. 1 more to go!
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Cyndia,
I had same information as Omaz. Herceptin is for anyone who is HER2 positive. I don't think it is effective if you test negative for it. Whether it is slightly positive or highly positive means the bad cells are multiplying hugely faster. For those of us with clean margins and no lymph node involvement, herceptin is used to target any rogue cells that could be in the blood stream. Most oncologists believe that it works best when combined with chemo. If you are HER2 positive, I am surprised that your oncologist wasn't giving you herceptin while you also received chemo.
My only reason for having chemo was because it supposedly made the herceptin work better. I don't really have any side effects from the herceptin. I had it weekly along with Taxol for 12 weeks, and now just get herceptin alone every three weeks. It is infused in 30 minutes now.
First time took longer because they give benadryl to make sure you don't have any big reaction. If not, then they cut that at later infusions. So...I went in for a 10:30 appointment today, and was out by 11:45. (my onc does bloodwork every time, and I have to see him, so it takes a little longer.)
I do have the runny nose off and on, but not much else that I can tell.
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This is my first post so not sure whether I am doing this right. Was diagnosed with HER2 positive breast cancer in October 2010 followed by 5 sessions of FEC chemotherapy (my veins collapsed from the chemo so didn't have no 6). Started herceptin in April 2011 on the Persephone clinical trial so will finish in 6 months after 9 sessions. Have now completed 5 sessions. Since I started herceptin I have had a runny nose (which seems quite common) but the worst is the really bad, achy joints to the extent that I can hardly get out of bed in the morning or a chair in the evening. My oncologists/GP tell me herceptin does not have side effects and have put down my symptons to various causes such as post chemo, stopping HRT, osteoarthritis and even old age. My question is has anyone else had this and more importantly does it stop when the herceptin stops? And even more worrying, if herceptin has no side effects, how would I know whether these are symptons of the cancer returning? I have had no more scans since the original diagnosis.
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