Herceptin - Quick Side Effects Poll
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I will get my third herceptin treatment today (if my bloodwork comes back okay). I get it once every three weeks. So far, my SEs include:
- Body aches/joint pain
- Acid reflux
- Swelling of hands and feet
- Bloody nose
- Neuropathy
- Mild diarrhea
All of these are at they're worst for a few days after treatment. I am also three weeks into radiation treatments, so I don't know if that is contributing to the fatigue I'm currently feeling.
I take L-carnatine and alpha lipoic acid for neuropathy. I started that during chemo and it does help. My naturopath recommended that I continue L-carnatine throughout my herceptin treatments.
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I just finished Herceptin. Was doing every three weeks.
Annoying one sided head ache - was worse week of treatment
Mild nausea
Fatigue
Loss of appetite
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I've been doing Herceptin for 6 months now with 9 more treatments to go every 3 weeks.
Side effects; runny nose, weight loss, fatigue for 2-3 days after treatment. The hair is growing back and so far I do not see it as being thinner that before. Overall the side effects were manageable. Yesterday I've done the MUGA test. Lets hope everything is OK.
Any advise on how to keep your heart strong? I fast walk 4 KM almost every day. Should I do more?
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Wellspring- I am not a doctor but it appears you are doing well with Herceptin. I think exercising is an excellent way to keep your heart strong. I just finished and had no heart problems!! I was achy and fatigued but not like chemo. Hang in there!!
Patty
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Have been on Herceptin/Perjeta infusions every three weeks since last May 2015. I have elevated fatigue for 2 to 3 days after my infusion, runny eyes and nose off and on all the time. I exercise every day and have not experienced any pains in bones or joints. Have been on BP meds for many years and my Echo is showing good heart health my Onc said. I take Lisinopril and Metoprolol for BP control, I have read that Metoprolol protects your heart from the SE from Herceptin of lowered EF. My BP has improved since I started infusions, was able to drop one BP pill daily of Metoprolol. I also have stepped up my exercise to daily where before it was sporadic so that may be helping lower my PB too.
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not very active, have been done major chemo since May 29. Only 5 more herceptin treatments. Still got that runny nose, no heart issues , had3 echoes. All about the same. BP is up, weight is up, diahreah comes and goes, and can't complain about joints cause I am doing yoga and taking Claritin , seems to help
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I had my first Herceptin only on Dec. 21st. I got the runny nose, felt like I had a cold for two days, bit of fatigue and diarrhea. I had PN in fingertips, balls of feet and toes during chemo. It started to really go away after chemo stopped, then came back when I started on Herceptin only, so we'll see. I have it every 3 weeks until July, soooooo..... I'm waiting until after rads to start on Tamoxifen, as I don't want to introduce anything new until after rads is finished. We'll see what that brings...
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Tomorrow my last (# 17) perception treatment is due, but I opted out with agreement from my onc. Did complete 16. I am just sooo sick of it. Better than the 4 sessions of 4 chemo treatments in the beginning that put me in the hospital and rehab, though. So some side effects either remained or came back. No hair problems, but growing slowly which is FINE. I have eyes that have gotten more and more cloudy... now hard to drive. Last treatment, second eye went so although cataracts (operation August 25),, there was no sign of them before chemo so it appears to me to be related to treatments. It got much worse my last perception treatment. (Also been on steroids so that has contributed to eye problems and gained weight)... Constant cough, many x-rays and no sign of serious problem. nose drip constantly, yes.... eyes were bloody and dripping for long time after first chemos. tongue sores, some occasional nausea... not much... diarrhea mild but sometimes urgent, first week or two... much more incontinence may be related to cough neuropathy from first chemos, but gets worse after each treatment then a little better by the end of 3 weeks. Some hearing losses... Everything on my body is worse. I do not do well with chemicals of any kind... in fact have been allergic to them all my life. It is always hard to separate out what is causing problems . I had several falls and am unstable walking... probably due to neuropathy I sometimes get confused and find my speech is sometimes slow and stunted. I am a writer, artist, college professor, (phd) but thankfully retired. Still painting though even when I can't see and have trouble with hand neuropathy. It's a long haul... I'm celebrating my decision to skip my last treatment... worried about permanent damage.
her2positive
Stage 1,2, or 4. they were never sure... in total remission for now.
Had Chemo (4 out of the 6 weeks) then almost died and became quite disabled, but did begin the year of herceptin.
Radiation was a piece of cake... 33 sessions
Lumpectomy... also easy
It was the chemo i couldn't take. Hope the herception works, cause I can't do chemo again.
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Thanks, Kacy, for the info. and congratulations on finishing. I have just started the Herceptin only phase , and I also had a very hard time on chemo with a rare, painful and debilitating side effect (but thankfully not life threatening). I'm curious to see what Herceptin alone brings. I've had one H-only treatment so far, 2 weeks ago. I still have nose stuffiness, runny eyes and nose, poor-ish vision, occasional nausea, and gi effects, but my rare chemo symptom is almost gone so I'm up and about, no longer bedridden.
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For me, joint pain, from head to toe, it seems to get better the more I move , but I get up from bed in the morning like a 90 year ol
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Finished chemo in October and now will finish out the Herceptin drug in 5 more months. Horrible leg,foot, hip, arm and finger pain. Feel like I'm 90 when I get up from sitting. I hate this drug
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glad I'm not the only one! Muscle and joint pain literally head to toe as well!
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After three longish working days I actually had to stay home today because of fatigue and all over body aches.
I finished chemo in Sept and rads in Nov and have been only herceptin since then. Every three week injection (subcutaneous). I never thought I'd be back to this much fatigue and pain.
Runny nose, nose sores also constant but manageable
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Hi Otterchica,
I think I had a similar rx as you. I had done ACx4 then Taxol x12 along with Herceptin every 3 weeks and rads.
I remember that about 6 weeks after finishing rads I came down with extreme fatigue. I can't remember exactly but I think it lasted for about 3 weeks and it was like I was hit by a truck! It seemed all the treatment which I had weathered quite well had caught up with me just when I was thinking I was out of the woods. I hadn't felt that tired during radiation at all. I didn't stay that tired indefinitely but it made me realize I needed to rebuild and take it easy.
Congratulations for completing so much of your treatment and I think you will feel better. But please give yourself a break and let yourself rest.
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Initially I was getting the Herceptin along with the Taxol. I am all done with the Taxol, and now that I've finally "passed" my MUGA, they have me back on the Herceptin. I get weekly infusions for 42 weeks - with some breaks as we wait for the MUGA to be normal again.
Aside from the heart issues, and normal fatigue… I've noticed that my vision is super blurry. Even just 6-10 feet away, everything is cloudy. It's more annoying than anything, but hoping it doesn't continue to get worse.
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CCharlene-
We want to welcome you to our community here at BCO! We hope you're finding support and helpful information on these boards. We're sorry to hear about the vision issues you're having, we hope it doesn't get worse either!
The Mods
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Charlene - where are you located? I haven't heard of anyone getting weekly infusions. Most of us seem to infusions every 3 weeks for 17 times. And I hadn't heard about vision problems. Hope yours resolve.
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So glad I found this thread....I started Herceptin as part of my chemo regime back in November. Had my last big chemo Feb 14, surgery on March 10 and started herceptin only in April 4. I go every 3 week though November. Dr said I wouldn't have any se. So I wasn't sure what was causing a few minor things but it is good to know I am not the only one.
Runny Nose for sure! Finger nails are horrible and splitting. Really tired and weird stomach pain (gas like) about a week after treatment.
My last labs showed some issues with Kidney Function and high levels.....anyone else seeing this?
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plantchild - no kidney problems, but my doc did a MUGA every 6 or 9 weeks to make sure my heart stayed good.
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Herceptin every 3 weeks, starting about 11 months ago. Also taking anastrozole pills (I'm triple positive), which give me the usual hot flashes and insomnia. Side-effects that I think are from Herceptin:
Runny nose - the whole time I've been on Herceptin, though the degree varies
Peeling/crumbling fingernails - first noticed this about 6 months in, and it's gotten steadily worse. What helps: wearing gloves to wash dishes, fanatical moisturizing, using a nail-repair polish to basically glue the nail together, keeping nails cut as short as possible so the ragged edges don't catch on things and get pulled off. Also avoiding using my nails for anything (peeling off labels, opening those plastic rings that seal every jar and bottle you buy, etc.).
Fatigue - Not sure if this is from the Herceptin or everything that came before. Regular exercise helps (running).
Skin - Recently I've noticed the skin on my palms and wrists peeling off. Also, my skin itches when I run - this never happened before the Herceptin and happens frequently now. Maybe something to do with sweat? Anyone else have this problem?
Muscle aches in legs - infrequent
Feeling bloated/gassy for past month or so.
Heart: EF is borderline low, but my cardiologist says that's actually normal for people who exercise a lot, so she is not worried unless I get shortness of breath.
I've got about a month left and hoping some of these effects will ease off at that point.
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Laughing Gas - please go to My Profile and add your diagnosis & treatment to date.
While I agree that Herceptin can cause a runny nose, I think the nail problems are from Taxotere - or maybe from Adriamycin if that's what you had??? Skin problems you mentioned are usually the AC treatment. Aches would be from any of the above, or Neulasta shots if you had those. Looking forward to seeing your previous treatments.
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Started Herceptin in January after my A/C chemo.
I am in the middle of my treatments now, will end in November of this year.
Side effect so far are brittle nails, lower EF( Ejection Fraction; oncologist claims it is from the A/C chemo not Herceptin), less energy, occasional nausea.
Note: I did notice that due to my inflammatory breast cancer ( red swollen orange peel inflammation), after my 2nd treatment the physical characteristics went back to baseline. It was like a miracle!
I think the Herceptin along with the Taxol was responsible in shrinking my tumor, and presenting clean margins after surgery. It was not until Herceptin came into the treatment that the difference was seen.
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Bravenurse - I did TCHP neo-adjuvant and my MO tested regularly for EF. Yes Herceptin effects the heart and some women have to stop taking it if the EF goes too low. You're absolutely correct. But since I didn't have pCR before surgery, I had to do AC after. The Herceptin was stopped for that period since it would have been a double whammy. It's my understanding that low EF readings from Herceptin usually resolve while heart damage from AC is more likely permanent.
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Minus Two,
My MO feels my EF will increase, she has always been right on spot, I try to be positive.
I will see after next months ECHO. Been getting more active and doing cardio, feeling back to normal, but no running yet!
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Bravenurse - So glad your doc is positive about the heart. Mine was too and my last ECHO was really good. Hooray for you with the exercise. I didn't really even start to do much of any exercise until I finished rads & herceptin. I knew it would make me feel better. Just had a hard time getting started again.
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I did 10 of the 12 weeks of taxol/herceptin. Quit due to bad reactions to the taxol. My EF had dropped so they waited a couple weeks, did a MUGA and restarted the herceptin. Started the every 3 weeks regimen in December. In March had another echo and EF had dropped again. This time oncologist said no more! Had a MUGA and things did not improve. So, I had 12 weekly and 6 every 3 weeks infusions. Hope it's enough!
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I everyone,
I'm new to this thread. Just had my first chemo one week ago. CMF, herceptin, steroid, anti-nausea (zofran?), and iron infusion, plus next-day Neulasta.
Since this is my first chemo, and I haven't gone to Herceptin-only treatment, I can't separate my herceptin symptoms from the others. Except that during my infusion, the Herceptin made me hot and gave me a headache (so did the iron infusion).
Okay, on to the side effects in my first week.
Nausea (mild), moderate fatigue first three days, weakness in my legs, runny nose (!!!), diarrhea (!!!) after day 3, and I can't think of anything else at the moment. Oh, mild sore throat and occasional mild headaches first three days.
NCBeachGirl
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NCBeach - Go ahead and take regular Claritin to help the Neulasta aches & pains. Start the day of chemo and take for 5 or more days.
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Thank you, minus two, I did take Claritin on the day of infusion/installation of Neulasta cartridge, and twice a day for 5 days after. No bone pain! yay!
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Update on side effects, but again, this is after just one chemo session (CMF, Herceptin, Zofran, iron, a steroid, and next-day Neulasta).
So May 23 was my previous post with some SEs listed. Well, my body decided to add quite a few new SEs to the mix.
Shingles rash under left breast (the one with the cancer); ear ache, sore throat, severe pain in my teeth (all on the right side; mild stuffiness and sniffles; and to top it all off, urinary pain and urgency!
Clearly, my immune system is VERY depressed!
I saw a doctor about the shingles last week and got an antiviral. Will see my primary care physician this afternoon about the rest of the stuff. Meanwhile I've been taking tons of Tylenol, some narcotic pain relievers (tooth pain is really bad), and AZO cranberry extract tablets with urinary tract anesthesia added. And lots of water.
The cancer center nurse said to go ahead and let the PCP do whatever tests she needs and prescribe antibiotics if needed. I'm supposed to show up for my next (2nd) chemo session on Monday as scheduled.
Ain't this just a barrel o' fun???
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