Herceptin - Quick Side Effects Poll
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Cassie - For me, I'm pretty sure the Taxotere caused the nail problems. Unfortunately the Herceptin delayed the healing - just like it delays faster hair growth. I frequently had a drippy nose & scratchy throat that I believe was a side effect of Herceptin. But since I too was in RADS at the same time, I made that my focus - just getting there every day. The Herceptin every 3 weeks wasn't too much bother especially compared to the SEs of the previous two rounds of infusions. VR423 - I didn't have diarrhea with the Herceptin.
Since my treatment was for recurrence, I was offered continuing Perjeta along w/the Herceptin for the rest of the year. I already have neuropathy from the Taxotere, and neuropathy is listed as one of Perjeta's possible SEs. The drug is too new to have much data but even a doc from MD Anderson I met at a seminar said it just didn't happen. Since everything else that rarely happens has happened to me, I turned the Perjeta down. I may be sorry, but we all make the best guesses we can at the time.
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Just finished my one year course of herceptin and had no problems to speak off. The one constant s/e I've had is hot flashes with a prickling feeling all over my skin. Different than the hot flashes I had while gong through menopause.
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My biggest side effect was constipation. It took awhile after being done for things to clear up but they did.
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still have ringing ears, floaters in the eyes, and some numbness in foot/toes and finger tips... I'm giving them to Taxetore and Carboplatin. Been on Herceptin only since early November, I'm attributing constipation, and 'arthritis' like symptoms in joints to it. Worst are ankles, hips, wrists, fingers, knee.
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I am glad I found this thread! I completed 6 rounds of TCHP on 12/23, and I will have my 4th Herceptin only treatment next Tuesday. Diarrhea has been a consistent issue throughout, but seems to be getting much worse. I also have problems with GERD. My gut is a mess! Anyone else have this issue? Any solutions? I am also having a hard time keep weight on. The big D cannot be helping. I see my MO this Tuesday, and see what she suggests.
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DaisyQ - glad your 6 "big" rounds are done. I lost 60 lbs on TCHP with the Big D and the fact that everything tasted like garbage. I required an extra liter of fluid with every infusion and another liter between infusions. My salvation was chocolate Instant Breakfast with added protein powder. Once I got on Herceptin only the Big D stopped and I've gradually gained some weight. In fact 6 months past the last Herceptin, I'm ready to start watching calories. I didn't have the GERD issues. Let us know what the doc says.
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i have been on herceptin since 2010. It is all I take at this point. My side effects are fatigue and leg pain. The leg pain seems to get worse the longer i am on it. My pallative care doc says that is impossible, in his experience the side effects stay the same level no matter how long you are on it. Has anyone else who has been on herceptin long term noticed the side effects getting worse over time
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Hello Jejik - I have been on Herceptin for a year and the leg pain has gotten increasingly worse over time. My doctors tell me it's from the taxotere I completed in last June. ~ Karen
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Hi, I completed TCHP treatments on December 26, 2014. I've had two Herceptin only treatments since then. My echo looked bad a while back and I had to miss a month. So I guess you could say I've experienced effects to my heart, but latest echo shows that I'm back to normal. My biggest problem has been pain in my bones and joints. If I sit for little bit and then get up, the pain is much worse. Once I move around a bit, the pain reduces. I'm half done with radiation treatment. Having to put my arms up for the treatment causes my shoulders so much pain they shake until I can put them down again. No pain relievers help me. I also have waves of feeling like I have the flu and a constant nasal drip that seems to contribute to recurrent infected sores in my nose. The doctor scratches her head on that last one. Lastly, this was much worse when I was on full chemo, but I have a pre-existing condition with my eyes called blepharitis, and I believe Herceptin aggravates this and causes more flare-ups of blisters on the ridges of my eyelids.
Daisy Q--If you are having GI problems, have you tried using papaya plus for stomach, and then you may want to add a probiotic to replace what you are losing with the diarhea. I'm pretty sure that probiotics helped save me.
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Hi MombieZombie,
You and I are on a similar schedule-I completed TCHP on 12/23. I have the constant nasal drip and the nostril sores too. You are the first woman who has shared that SE. Very annoying painful. Thanks for the recommendations! I am curious what probiotics did you use? I go for my echo on Tuesday. Fingers crossed that everything is OK and I can continue (and finish!) treatment.
Thank you and enjoy your day. We have a beautiful one shaping up here in the Midwest!
Amy
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hi everyone,
It's been 2 years 4 months since I finished Herceptin. Someone wanted to know about the chemical smell in urine. Yes, for 2 days after every Herceptin only infusion my urine smelled like home hair permanent. About the post nasal drip. Had that too, for the whole year. The bone pain was helped by having them slow the infusion down from 30 minutes to 90. Helped tremendously. I did not have any heart damage, but my cardiologist attributes that to metoprolol I've been on for years prior for high blood pressure. He is very knowledgeable about Herceptin heart effects and told me to never let any doctor take me off metoprolol because the effects can come years out from treatment.
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I am getting Herceptin only infusions now after completing chemo. I am getting my second now. I asked to slow down my infusion from 30 min to 60 min infusion. the nurse was argumentative about this and said it wasn't protocol. I explained why and she was rude about it. Does anyone know where I could get some documentation that supports slower Herceptin = less achy SE. I explained the support thread and the subjective SE others have had. They don't believe me .
Thanks
PMR53
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This link might help. Look under #4 "side effects". It clearly states there that the infusions should be slowed down or stopped if you experience side effects.
http://xpil.medicines.org.uk/ViewPil.aspx?DocID=36...
It is common knowledge to do so (not only for herceptin) when you have adverse side effects from the infusions. My MO started me out at 90 minutes when I first started the every three week dose, and gradually cut it down to 60 minutes when I had no adverse side effects. I have NEVER had that dosage over 30 minutes. It infuriates me so much when the medical team does not listen to our concerns. Maybe you could talk to your MO or request another nurse? Unfortunately we often need to be insistent, or downright rude, to get results.
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Protocol at my center was 30 minutes too. They did argue but gave in when I insisted on 90. It's absolutely your cancer & you're paying for the infusions. I suspect it's a bit like restaurant turn over - they want the chair to feed & bill more people. Hope your MO will back you up.
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thanks Minus2! I had it over 1 hour but they made me wait to ask the Nurse Practioner. MO gone today. They were grumbling about it and had to make a big deal of it. Geez.
PMR53
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Thts great tht you're doing great. I got to stay on herceptin the rest of my life..did your Dr ever do a tumor marker test from the start an also the end? Mine started at 3000 after 2 rounds of chemo it went down to 300...
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Finished 6 rounds of chemo (taxotre, carboplatin, with herceptin) now just herceptin every 3 weeks until Oct.
runny nose, hot flashes, night sweats, pealing nails, and itchy skin, I can live with.
What is driving me crazy is the severe neuropathy and chronic cough.
MO put me on meds for feet. Helped with the joint pain. But not the swelling or numbness. Have not found anything for the cough. Was told that since they both are so severe, they might not completely go away. Have not had a good nights sleep in so long. Tired all day.
Any help will be greatly appreciative . Thanks
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Finished 6 rounds of chemo (taxi tree, carboplatin, with herceptin) now just herceptin every 3 weeks until Oct.
runny nose, hot flashes, night sweats, pealing nails, and itchy skin, I can live with.
What is driving me crazy is the severe neuropathy and chronic cough.
MO put me on meds for feet. Helped with the joint pain. But not the swelling or numbness. Have not found anything for the cough. Was told that since they both are so severe, they might not completely go away. Have not had a good nights sleep in so long. Tired all day.
Any help will be greatly appreciative . Thanks
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CJ's - sorry to hear about your neuropathy. It's caused by the taxotere. Many MOs cut back on the dose if it appears during the infusions of that treatment. There's a 70% chance it will get better (meaning better than it is now but maybe not back to square one) but that can take up to two years. I'm 1-1/2 years PFC (Post Final Chemo - not counting Herceptin) and most of the feeling has returned in my fingers. Feet, toes & lower legs - not so much. I did get a referral to a neurologist and started researching.
There is a thread on BCO called "Vent about Permanent Neuropathy" that you may want to read. Most of us try to compare complaints, but there are also some helpful things about shoes, meds, etc.
Nail problems are most likely courtesy of Taxotere also. Did you ice your nails? Herceptin will slow down the hair and nail growth but you should gradually get relief. My fingernails have finally all re-attached 7 months after final Herceptin, and I've had 3 hair trims. Your dermatologist is the doc to see for hair, skin & nails. Mine said to continue Biotin.
I did have a runny nose w/Herceptin but no cough. Have you been to see a pulmonologist?
When you get time, do go to "my profile" and fill in the specs about your BC. It will make it easier for us to respond.
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- thanks so much Minus
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Had mammogram yesterday. Was told I need biopsy on right breast. What the hell? Can it happen this fast. Just getting better from chemo and radiation!
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CJs, hoping for benign results!
Re: infusion time - I've had 6 Herceptin-only infusions and they've all been done over 60 minutes, with no talk at all of going down to 30 minutes. Interesting how different MOs have different practices.
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CJs - Not sure when you had your original diagnosis & treatment and what all was done since it looks like your original post is deleted & can't find a preview yet. My recurrence was discovered exactly two years from my mastectomy. I would recommend you find an experienced doc to do an ultrasound, and if there is still a question, an ULS biopsy right then while you are on the table. Not sure what part of the country you are in but I could send you a great Houston reference. Hope it's just something like a cyst.
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DX-8/28/14. Finished chemo 2/4/15. Finished radiation in April 2015. Now just herceptin every 3 weeks and Arimidex
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I know you're worried. I hope what they're seeing is a result of the improved & increased capabilities of the new mammogram machines and something harmless. Have you had any other scans since chemo & rads? CT? MRI? Hope you can get in to have an ULS biopsy soon. Or maybe a PET CT which puts out lots of radiation but picks up hot spots anywhere in your body. Sorry, I don't know anyone in Ohio.
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first scan since treatment. BD is to call tomorrow. Hoping to have something this week. They seem to go very fast with me. Thank
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my leg, joint and muscle pain is getting worse every treatment. I asked the nurses the first tx after the taxotere to please run the H&P an hour each. They were happy to. My pain Dr. Has increased my gabapentin to 600 during day and 1200 at night. I took meloxicam for 3 days before it ate up my gut. I need something that will help ...I'll be on forever. Has anybody found something that works. I'm going to need a walker with a seat soon...
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I am 8 weeks PFC. Herceptin only until December. I have joint pain, fatigue and body aches. Is this Herceptin or left over chemo? I don't know. My hair re growth doesn't seem very fast, taking biotin, not sure what is normal after chemo.
PMR53
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I had a lot of stiffness and fatigue when I finished chemo. I thought it was from the 30 minute Herceptin infusion. It eventually went away. Now I think it was from the chemo and/or being thrown into menopause.
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PMR53 - Herceptin can slow down the hair growth - but it does eventually come back in while still on herceptin. Good luck!
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