Herceptin - Quick Side Effects Poll
Comments
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PMR - the tiredness & joint pain is probably both leftover from chemo & Herceptin. If they're running your Herceptin at 30 minutes, get them to slow it down to 60 or 90 minutes. It made a big difference for me. Ramols is right on about the hair.
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I have muscle, bone and joint pain that got more pronounced right after chemo ended, but has gradually been improving. My MO says it's from the taxotere. I'm now 12.5 weeks PFC. I still have fatigue as well, but that is more likely due to radiation which I just finished 2 weeks ago. The only SE I can directly pin on the Herceptin is a runny nose. I haven't noticed any adverse side effect to the 30 minute infusion and prefer it, as I'm in and out of the chair and on my way fairly quickly!
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Thanks for replying!! I think the Herceptin is the culprit for body aches and joint pain from what I have read. Everyone seems to have different SE. I get the infusions over 60 minute, but I have to ask for this. The staff is very resistant. I have nearly 6 more months of Herceptin. Hopefully it will get better.
PMR53
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PMR - none of the infusion nurses I've ever heard of believe that slowing down the infusion helps, but it's worked for too many of us to discount this. If you have the time to sit longer, lobby & complain until you get one at 90 minutes and see if there's any difference.
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I thought the body aches were from chemo but I finished chemo a year ago, and I just finished my year of Herceptin in February and have WORSENING body aches.
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Deblc - It takes a long time. I was still having lots of aches at least 6 months after the last Herceptin. What really helped me is PT.
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weight gain
Numbness in fingers, toes
Runny nose
Rash on face, does not happen on chemo days.
Heart racing
Weak knees
Bone and joint pain
Hope that's it, only been on it since March 2015
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JerseyGirl - I think some of those SEs are from your other drugs. Looks like you're having infusions every 3 weeks? Numbness most likely the Taxol - a known neuropathy cause. You should tell your MO since they sometimes can adjust the doses. Weight gain probably from Arimidex. If you're getting Neulasta shots after the Carbo & Taxol, that's probably the worst culprit for the bone & joint pain. Take regular Claritin the day before & for several days after. Agreed, I hate the fatigue that all of the drugs cause.
Herceptin can definitely cause heart issues although I understand they usually resolve once you're finished w/the drug. I had an Echocardiogram every 3 months. Some folks get Muga scans. I assume your MO is monitoring. Good luck w/continuing tx.
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Severe diarrhea (lost count at 30 times in a day), nausea and vomiting leading to dehydration (went to ER and stayed in observation for 4 days until symptoms were manageable with meds)
Low potassium
Low magnesium
Fatigue
Runny nose
Inappropriate Sinus Tachycardia (which sent me back to the ER and in observation for 1 day for pulmonary and cardiac testing). Now treating IST with metoprolol and cardiologist feels confident it was caused by herceptin. Funny thing though, my EF as measured by echocardiogram has actually improved from 55 at baseline to 67 now. Go figure!
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hi ladies,dont tell me the runy nose is from the herceptin! I was so looking forward to this going away. by wednesday i'll be 4 weeks pfc and have had one herceptin-only treatment thus far. i have treatment until february. thus far i dont sense any SEs, but i do get a flutter in my sternum/chest area. I'm do for an echo on the 27th. i'm nervous. my chemo was stopped bec neuropathy. I hope i won't have to stop herceptin bec of heart trouble. that would make me very sad and scared.
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MaryJC - Yup - the runny nose is definitely Herceptin. Herceptin can cause heart problems so I'm glad you're getting an Echo. I think Herceptin heart problems resolve once the drug is finished. The chemo drug that can cause permanent heart problems is Adriamycin (the Red Devil). It sounds like you were getting Taxotere since that's a neuropathy culprit. When you get a chance, go to My Profile and add some of your details so we'll understand better.
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MaryJC,
My runny nose improved after a few months. I still get a slightly runny nose from Herceptin only treatments, but nothing like it was on TCHP. I'll be in the chair getting another treatment tomorrow. I think I have 9 more?
Is anyone else is suffering from chemo brain? I am just not processing as quickly as before. I used to be able to keep an organized to-do list in my head. Now, if it isn't written down I probably won't remember to do it. In conversations, I know what I want to say, but sometimes can't find the word. It is definitely worse when I am stressed out or tired which seems to be the norm these days..
Amy
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Hi Minus Two, ugh re the runny nose. Is that the culprit behind the teary eyes too? My nose is runny and slightly bloody. To answer your questions really fast, yes I'm TCH. Started 2/18/15 adjuvant. Had lumpectomy in November. I have read that the heart issues resolve when stopped although you have to be monitored for 2 years after treatment ends. Goodness, so much, too much😞😤
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Daisy:
I too have chemo brain! Hate when I can't think of the word I want. Drives me crazy. Finished chemo in February. hoping it goes away soon.
I have another biopsy tomorrow. Went in for a mammo on Friday. They found a mass on my right breast this time. Praying all goes well
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MaryJC - I believe the teary eyes are from the Taxotere too - sometimes called "TaxoTears". Good luck w/the Echo. The LVEF on my Echos gets better every time.
CupCakes - Sorry about the new biopsy. Hope all goes well & it's negative. You will be in our thoughts.
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CJSCupcake, I'm praying for you, keep us posted!
Thanks MinusTwo, are you doing anything to help your results?
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MaryJC - I'm almost 8 months past the last Herceptin and haven't had an Echo since then. No, during treatment I didn't do anything except hang in there. It would have been better if I's kept walking the whole time, but that didn't happen. Since then I've been gradually trying to build my stamina back up. I plan to start water aerobics next month.
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Minus Two,I'm a little nervous about my heart. I haven't been able to work out in some time. I'm a runner. Btwn my schedule, not feeling well btwn cycles and the weather, just didn't happen. I pray it good and I won't have to stop another treatment. I've read that reduced heart function can come with and w/out symptoms. I'm en route to meet with my BS. I'll ask her for more details about how they handle it.
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MaryJC - ask your MO to refer you to a cardiologist if they haven't already. Someone should be tracking your heart functioning while on Herceptin (especially if you also did AC chemo) with either echocardiograms and/or MUGA scans.
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I'm due for another echo this month and it's scheduled for next week. I had one pre chemo and scheduled every 3 months. BS and PA think it's stomach related or anxiety the latter makes a lot of sense bec I gave been going thru a lot.
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hi everyone! I had my 2nd herceptin (only) two days ago. Prior to that I had 6 AC (after 4th I was started on Taxol, but had allergic reaction to it, so I was switched back on AC, and 2 days ago I started tamoxifen).
I am having joint pain that is increasing each day, and stiffness in my whole body. I think it started few weeks before I was put on Herceptin, but as I said it has gotten worse since I'm on it. My fists feel so stiff all the time - especially in the mornings - it takes I while before I can start moving my fingers.... I'm not sure is it the pain in my fists that keeps waking me up at night or is it the hot flushes (or both joining forces :-) ) ...
My oncologist says that joint pain and stiffness are related to taxol, even though I only had one dosage. That doesn't make sense to me, especially since it is getting worse ....
To be honest I'm dreading the idea that this pain is something I'll have to live with for at least another year.... Other SE I'm experiencing are: bloated belly (that started with few last AC's but it is getting worse with herceptin), and teary eyes (but only when outside)
I've read here that for some of you pain and stiffness got easier after the infusion time was prolonged to 90 min, but I get my herceptin as an injection (subcutaneous). Is anyone of you having it injected too?
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senka, my infusion center nurse told me they treat the joint/bone pain from herceptin by giving extra fluids. Would that be an option for you? I have never heard of herceptin being injected.
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Senka - try taking claritan too. I took that with each nuelesta shot, as those caused aches and pains - as did the taxol. I've never heard of herceptin as an injection either. Good luck!
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Like the rest of you, I'd never heard of a Heceptin injection, but BCO actually posted research news when it was in trials
http://www.breastcancer.org/research-news/20120810
Since a bunch of us found that spreading the infusion over 60 or 90 minutes instead of 30 considerably lessens or alleviates the side effects, I wonder if the potency of an injection would be an issue?
Senka, how often is the injection? Maybe your MO could compare the strengths. And yes, your MO's comment about Taxol could well be correct. The long lasting damage from that drug is well known. An example you mentioned would be the eyes.
I am not ER/PR positive so have no experience w/Tamoxifin, but I know there are threads here that discuss SEs from those drug. Hopefully someone who's been there will respond.
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Thank you all!
I'm pleased to say I'm feeling much better today - maybe it is due to the fact that yesterday I did any single thing I could think of - long bath, cold liver oil, biobran 1000, aloe vera syrup, magenzium, vitamin E, lots od fuids... this morning my fists were not as stiffed as they were for the last few days :-) Today I had a massage too, and I'll try doing yoga later on....
Ramols - isn't claritan an antihistamine? I thought it is supposed to help only with running nose, watery eyes and similar symptoms? But I'll definetelly check it out. Thank you.
Minus two - I get my harceptin every 3 weeks. The dosage is 600 mg. I spoke to an medical worker last night and he explained to me that all drugs given subcutaneously are released to the system at the much slower rate than when they're administrated through IV (e.g. that why insulin is given subcutaneously). So injecting it should be much easier on the organism than IV. (It makes me think how I'd feel than if I had IV :-( ...
I'll read on tamofixen too to see if any of this should be attributed to it.
Right now I'm comforting myself with the thought that the reason I felt so bad for the past few days was the fact I had herceptin and started tamofixen on the same day, so maybe the initial stroke of that combo was too much to deal with.... and maybe now my body is adapting to it.... the level of pain I'm feeling now is bearable, the way I felt yesterday I thought if it keeps progressing at the same rate in the few months I won't be able to move at all.. The fact I'm better today is making me feel optimistic :-) so it is a good day! :-)
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Senka - regular Claritan is one of the things recommended for bone & joint pain from Neulasta - the shots sometimes given after each chemo to build up your immune system. Yes, it is an antihistamine. I'm not sure why it helps, but is really does. I took it the day before chemo and for 3-5 days after.
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senka I am curious about your reaction to taxol I am on taxotere carboplatin herceptin perjeta pre surgery the last 2 times I've had a slight itch in my throat from the taxotere have to stop it load me up with steroids and Benadryl and get into me slow they are talking about possibly hospitalizing me to infuse very slowly and keep a close eye on me.. Never felt shortness of breath just itchy and slight tightness in my chest
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MinusTwo - I'll definitely try it. I'm feeling as well as I did yesterday, so I'd rather not take any more drugs, but if pain increases I'll take it. Thank you!
Stephmoen - I had my first (and last) taxol two months ago - it was supposed to be the first of twelve weekly infusions. I felt fine during infusion, and only hours later I got skin rush on my stomach, went to ER straight away, they said it was an allergic rush and gave me a shot and some pills, and I was instructed to take calcium as well. Rush kept spreading to the rest of my body for the next few days (and didn't disappear for some ten days I think). I didn't have any more symptoms (aside from rush being quite itchy), but I was really worried since I knew this was due to taxol. I spoke to few oncologists since mine was away, and all of them have said different things. At the end I decided to listen to the advice of a retired oncologist (who used to treat my mum for breast cancer too and who I really trust) and discontinue taxol and have two more infusions of AC instead. ... One of the other oncologists suggested to try taxol once more - but since no one suggested hospitalization and close observation I didn't feel comfortable doing it. ...
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I saw this post and thought "OMG, I feel that way too!"
I know what I would like to say, but the words just will not come out.
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Anyone unable to complete Herceptin? I have had 8 months of it, but this last time was brutal on my body. Nothing made it tolerable, so I quit. I looked at studies and I am comfortable with 8 months, it has been studied for 6 months and had only slightly worse outcome.
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