Herceptin - Quick Side Effects Poll
Comments
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My left elbow hurt terribly for about 36 hours. I am so right side dominant I may as well have a hook on my left so no overuse or trauma.
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I've been on herceptin since my diagnosis in Oct 2008. I've been on *herceptin only* since June of 2009, so three years. I get my treatment every three weeks.
The major side effect I've had, which took a very long time to diagnose, is severe depression. I thought it was just because of cancer, and then some family issues, and parenting challenges, etc...and hoped it would all get better one day. Then last year I wanted to travel for about two months, so I took two of my treatments off. Within a few weeks I started to feel so much better, and by the end of my trip, I thought I was cured! Then I returned and got my next treatment, and I was a basketcase again.
My GP put me on a low dose of celexa, which made me feel "normal" within just two days. I'm so very grateful to have my sanity again!
Ossa - I've advised my oncologist that I no longer want Muga scans, due to the isotopes (nuclear medicine) that the inject you with. I've had so many bone scans (also using nuclear medicine) due to my Stage IV diagnosis, and have to be on herceptin for life, so I want to limit any further exposure if possible. Since an echocardiogram is just as sufficient, I've opted to go that route for my monitoring.
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Warm welcome ninismom.. See you are in Abby, I am in Chilliwack but work in Abby. You should check out "the Canadian Connection...Calling all Canadian Women" a great tread. lots of support
I went to see the Cardiologist today.. Had a stress test done and have been put on Alpha and Beta blockers as well as ACE inhibitor to try to get my EF back up.. Also have to wear a heart monitor. Will get one in about a week. Meanwhile my Muga is delayed as doc wants meds to work a bit longer before my next Muga.. hoohumm.
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Ossa, so why did you have a stress test done? Are you struggling with heart palpitations? I've had 3 echo's so far, and 6 herceptin infusions. I am meeting with my new cardio doctor Friday. I'm hoping he knows a little more about herceptin/heart problems.
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evebarry..
My EF dropped by 11 % from one Muga to the next, so a total drop of 14% also had heart palpitations.. Had palp. after each infusion, but it would ony last for a day or two..After the 12th and 13th treatments the palpitation lasted about two weeks each.. MO was concerned about the 11% drop. Herceptin on hold while trying to get EF function up.
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Ossa, where is your EF now? My oncologist refuses to do Mugu's due to the radiation factor. She feels we are put through enough with all the scans and etc. My EF dropped 15% after the second infusion as to why I am seeing a cardio specialist. My palipations haven't stopped from day 1. They are slightly better than they were after the first 2 infusions. Slowing down the infusion to 90 minutes has helped a lot as well as doing lesser dosage weekly infusions have helped. My heart beats erratically and often can feel it either quiver or jump. Most the time I ignore it as I've been told it's my new normal. PVC's are said to be normal except before herceptin I didn't have them. I wish my oncologist would give me a herceptin break to see if my heart would go back to normal. I tried getting out of it this Monday, but they talked me into coming in to do blood work up and before I knew it I was being hooked up for an IV. Why is it so hard for me to say no more for now?
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eveberry.. My EF is currently at 47%. I stated at 61 same for second Muga went up ( I know strange) to 64 then dropped to 58 now 47..
I alo have the heart Quiver/jump feeling my heart deff. pumps harder.. I have not had a treatment since April 3 and feel so much better.. My heart beats almost normal again Did not realize how crappy I felt until now that I feel better.. I am going to ask MO if I can switch to weekly treatments Are you on any kind of meds for your heart? Sure hope the two new meds I am on is only temporary.. Don't like meds...
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ossa...I hate meds. For whatever reason, I seem to get the side effects of meds. My Ef started at 65, and dropped to 50. After weekly and slow infusions it is up to 55. It's so encouraging to hear your thumbing heart settled down when you stopped the herceptin. When I was off for six weeks due to reconstruction surgery (my choice), I began to feel good. I forgot what it felt like to feel normal. I had consider PAC inhibitor to protect my heart, but heard it is ongoing meds you have to stay on so I'm not sure about doing it. And I tend toward low blood pressure so I'm not sure I can take heart meds.
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I was diagnosed with HER2+ breast cancer in Aug. 2011 and had a bi-lateral mastectomy and lymph node removal (5). I underwent Adriamyacin and Cytoxin (awful) and am now in my 5th month of Herceptin. My biggest problem with the Herceptin is abdominal weight gain, muscle cramps and disorientation. Of course the Drs. say it's not the Herceptin - yeah, right! I also am experiencing extreme fatique and dizziness.0
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Hi,
I'm on my last 4 treatments of Herceptin. Got A/C and Taxol for 20 weeks and started Herceptin last August. I've been having some new joint pain, elbows and knees and well as some back pain in the last 2 months. For the back, I'm not sure if it's the bones (spine) or muscles. I'm so affraid it could be mets. I also have some fatigue. Anybody else has joint pain?
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Lots of us have had joint pain on Herceptin, but now that I've been done for 3 months it's almost completely gone!
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I have joint pain.it drives me crazy. I have been on Herceptin since last December and will be on it until Dec There are days I feel like I am 90 years old!It is mostley in my knees and hips and one of my shoulders!
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I had my first dose of Herceptin only on Friday, it's Wednesday and I'm dragging. I have spurts of energy, but feel the need to nap during the day.
Is it normal to feel this blah this many days after? Will I continue to feel this way on the next treatment or is it only the first?
Thanks
Jen360 -
Jen...it depends. Some bc women don't seem to have a problem with side effects. I had minor problems the first day of the infusion. I came home and took a nap. The next day is when I noticed unusual fatigue. I was exhausted the first 2 wks after the Herceptin infusion. The second infusion things got worse. But, I learned the second infusion they pushed the Herceptin through me in 30 minutes. To help eliminate side effects, I'm doing wkly infusions at a much slower pace.
After going home I crashed. I couldn't do anything for a few days. I developed other issues as well such as heart palpitations, headaches and chest pains. I was out of breath after walking up or down the stairs. Even now after several infusions I tire easily. I have to sit down and catch my breath and rest more. Before Herceptin I was known as the energizer bunny. Now, my batteries are low, and I'm beginning to feel my age.
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I get herceptin once every 3 weeks..but until end of March it was combined with my Chemo...then i started radiation.so my last infusion was right after my rad treatment and yesterday i was exhausted. So no I am on just herceptin so we will see,,Unfortunatly i am starting tamoxifen so who knows what Se's are fom what LOL..all i knwo is that if there is a Se I probably will get it lol
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I had to take a herceptin break of 6 weeks due to muga scan heart ejection fraction numbers. I started out in november at 75 heart ejection fraction with steady declines through out chemo tx and herceptin. Have been on herceptin mono since Feb. In may my muga scan hit its lowest point of 60. Onc stated too much of a decline from original 75 so was on a "herceptin break". Loved it. Much more energy, felt normal for the first time since this whole bc mess began a year ago. Had another muga scan last friday. Heart function bounced back to the original 75, so they resumed herceptin. I feel terrible. Low energy, sweaty, depressed, cranky, achy, and just feel off, like I cant focus on work, etc. I have about 8 or so more to go and know its in my interest to finish, but part of me is like enough already. I have done 4 dose dense rounds of AC, followed by 12 weekly rounds of taxol and herceptin, and now the herceptin alone. Based on the Good Morning America host Robin Roberts experience, I am wondering if its the bc that is going to do me in or the treatments. Really debating whether to continue. Wish the results of the study looking at 6 months of herceptin versus a year would come out with favorable numbers so I could stop.
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I always had a horrible taste in my mouth the fist couple of days after the treatment. After chemo I took herceptin every 3 weeks and the last few make me have problems breathing like something I was allergic too. The doc had them slow them down to an hour. they would pump that stuff through me in 20 minutes and it made me so sick and could not breath. the nurses did not want to believe me but I stuck to my guns because I knew how I felt. I did not take the benadryl then because I was going to work but I think if I had it may have helped that. The taste was not as bad as regular chemo but I got hooked on mints haha.
Good luck to those on it and I hope you can stay with it. It has saved many lives but do tell them if you have side effects and don't let them tell you you don't know what you are talking about because you know your body better than anyone.
Carolyn
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ccjj, when you were on your Herceptin break, did they put you on heart meds? Or did you recover your EF without heart meds?
BTW, to my knowledge, the issue RR developed was mostly likely due to the Adriamycin, not the Herceptin. I don't know if that helps you with your dilemma about continuing Herceptin or not, but thought I'd share. I understand trying to determine when treatment risks start to outweigh cancer recurrence risks. It's a tough road we walk.
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ok so I am suppose to be on herceptin every t weeks until the first week in December. I asked om oncologist what iff i have to go ff it before...his reply was he is confident that i ave had enough at this point and then said something about studies after your on for 3 months etc. So I am qustioning staying on until December I am tired fell achy and my hip joints are killing me and like ccjj said after hearing abouyt Robin Roberts thing i am wondering more and more about the effects of treatment so many questions why can't it be more cut and dry!
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I so struggle with continue treatment as well. I appreciate so much jittersmom and ccjj post as it makes me feel like I'm not alone. I skipped last week because I had a lot going on and needed the break and could not have made the appt due to work. I really want to stop the treatments. I too think I've had enough for early stage cancer. I haven't had 6 months of infusions (having skipped about 4) since starting in February. I figure at the end of summer or sometime in the fall I'll be done with it all. The only reason to continue is that I haven't been consistent enough with the Herceptin infusions and I am slightly a little nervous not to continue them. I also like my oncologist. I feel fortunate to have a good oncologist who cares and tolerates me. I fear if I just stopped the treatments that I would just stop seeing her altogether and if there were a recurrence, I wouldn't have an advocate like her to help me that is if ever I was dx with cancer again.
I DREAD the weekly Herceptin tomorrow morning. My daughter says I have a perculiar smell after the infusions.
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I had 3 months of Herceptin with Taxol. EF dropped dramatically. I am on an Herceptin break. See the Cardiologist next week. I feel good, so hopefully that means something! I did notice the Herceptin smell as well - on my body and in my urine.
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So glad you guys mentioned the smell.. thought it was just me.... been on break since April 3.. probably back to finish last five starting this Tuesday. depending on Muga results.. should know Monday.. As crappy as I feel on Herceptin I still want to finish all the treatments..just in case....
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I have completed 24 of 52 herceptin infusions. Stopped them for four weeks in April/May due to a drop in the EF. My onc called this evening and said after reviewing my latest echo, she wants to start doing three weeks on, one week off to see if I tolerate that and in a month will do a MUGA. She has another patient that does the 3/1 and is doing very well. I'm so ready to stop it but desperate to finish the full course too. UGH!! Why can't anything about this be easy?! I'm tired and very achy in my joints, especially in the morning. I have noticed a smell though...I'll need to ask my husband if he has noticed anything.
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I thought the smell was from TCH- the TV part, cause I didn't notice it as much during my Herceptin only week.
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I have also noticed the smell...I used to think it was from my other chemo drugs but I notice it when i am just getting the herceptin..I keep asking my family ....can you smell it? they look at me like I am crazy! I read this booke called Rocking the Pink Finding Myself on the other Side of Cancer byLaura Roppe and she mentions the smell also..so we are not crazy! This was a good book by the way0
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I too notice the smell in my urine after Herceptin for a couple of days. My EF was 56 after my last SIMA and I have another one coming up this Friday. Like a dum dum I forgot to ask my MO what it was last time we met. I asked the nurse last Friday during my TX. She said it had dropped 8 points from my previous test. We'll see what happens!
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I don't notice any smell at all.
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I just finished up my 6 TCH and I haven't noticed any smell either. I do notice that my urine has a foam to it for a few days afterwards. I'm going to pay more attention to see if I notice a smell after my next Herceptin-only treatment.
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The smell I notice reminds me of the chemical smells at the hair salon! For me anyway it lasts at least 24 hours.
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I noticed it most with TCH. Lasted about a week. That's why I didn't think it was the Herceptin, cause I had Herceptin every week and the smell would go away a week after the tx. Except on my little neck pillow, that I sweat on, that holds the smell til I wash it every week. Weird ammonia like smell.
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