Herceptin - Quick Side Effects Poll
Comments
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I've had two combination Herceptin & Perjeta tx and I've had leg aches. I had determined to try Claretin next time since it helped with Neulasta.0 -
MinusTwo-- I'm with you! Leg aches and creep crawlies on the legs... I feel like I have to keep wiggling. Brain fog right now is worse... can't imagine it being from Herceptin, but who knows. Good idea on claritin.... now if I can remember it!0 -
- Hi, I was given Chemo, Herceptin and a trial drug called Beth all together every 3 weeks. Chemo for four and a half months and the other two for a year. I had the usual runny nose, terrible nails, loss of hair and blood noses. I was sick for 2 years. I had constant burping, nausea, funny feeling in left inside knee, insomnia and developed terrible anxiety sensations in my arms and legs.
- Unfortunately no one knew how to help me so i suffered alone. I eventually fought my way out of it and I am doing brilliantly now. My suffering could have been lessen with some help.
- Cassieblanca
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I had leg pain during my Herceptin-only treatments. My thighs ached and my feet hurt (and sometimes would cramp). I finished Herceptin three weeks ago and the pains have nearly disappeared! I am so happy to report this, as people have suggested to me that it is the Tamoxifen not the Herceptin causing the pain. Still, it is a small price to pay if it will knock this beast out of me!
I have one fingernail that is all messed up. My MO says it is not the Herceptin, but I am not convinced. I didn't have nail issues throughout chemo.0 -
since i had to stop herceptin for awhile, and wasnt doing anything else, since resuming i have noticed: it does affect my nails, splitting in layers, Dry skin, muscle cramps and bone pain, runny nose and diarhea, shortness of breath, vision weirdness, and headaches. all this for about a week after herceptin, and then my energy and enthusiasim comes back. i know that it is helping, but can hardly wait to have my last one1 one or two more, thats it.0 -
Five months post herceptin and my toenails are still splitting. This despite daily intake of 5000 mcg of biotin.
Also, still with a bit of runny nose n the morning. Otherwise, im all good. Been doing Crossfit for 8 months now. Even before i was done with Herceptin.0 -
Thanks so much to all of you who personally checked on me since I have not posted for 8-9 days.....it really touched my heart♥
So recently I was able to get AmaWaterways to sponsor 2 autumn river cruises in Europe .....for every booking they will donate $500 to breast cancer research, prevention and treatment.
I started a NEW post in the fund raising section.....
http://community.breastcancer.org/forum/63/topic/815789?page=1#idx_1PLEASE
bookmark it as one of your favorites to maybe join me on one of the cruises or at least to "bump" the post as soon as I have all the info!
Thank you for your help! xoxo
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Oops...here is what I wanted to share with all of you...
http://community.breastcancer.org/forum/63/topic/815789?page=1#idx_1
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ukkate~ i get terrible leg pains. it's like i've sat in the same position for WAY TOO long. i think i need to get moving more during my days? i don't have a follow up with my onc for a few weeks so I'll ask him about it when i see him. i did mention it to the nurses last week when i got my herceptin (every 3 weeks now) and they weren't too fazed by it.0 -
I am so glad that I found this site and signed up to it.
I was on Herceptin only, post chemo (FEC) from January 2012 for 9 treatments (on a trial) and just felt ill/weird all the time. This was following a lumpectomy. So ill that I took a voluntary redundancy rather than face going back to work.
I was unlucky enough to get the C back so after the mastectomy in March I am back on the Herceptin, having had 4 alongside chemo and just had #11 of 18. And it is so "re-assuring" to find that my cramps, flu-like symptoms, fatigue, low magnesium levels, unsteadiness, etc are not that uncommon. It's not "just me" and I'm not alone.
Thank you all for sharing your experiences and giving this girl a real boost.
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I am on Herceptin every 3 weeks, I also take Exemestane orally, I have had mouth sores for almost a year, only 1 or 2 days a month are they minimal...anyone else, the magic mouthwash makes me vomit...i'm in agony!0 -
I also had mouth sores that were frequent and painful. There is a product called "Canker Cover" that consists of medicated discs that you put on the sores and they cure them within about 8 hours. You can find them in most drug stores - they are over the counter. I still use them on occasion (now 5 years post chemo & Herceptin.
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I am having severe pharyngitis - specialist says my vocal cords and throat are severely inflamed. Thinks it is from herceptin, and possibly from esophageal reflux, also due to herceptin. Had herceptin every week for about 12-14 weeks then 2 times, dosed for every 3 weeks. 48 hours after those two doses felt like someone was strangling me, and my throat and neck hurt terribly, all the way up to my ears. Oncologist stopped the herceptin thinking it might also be Nicholas, but has not yet responded to the throat Alexander's comments. Nobody was treated this and I am exhausted trying to breathe, so my family doctor took over today and put me on something to stop the swelling and stop the reflux.
I have also had the knee and hip pain problems, General pain all over, and the bleeding nasal problems. They do not seem to be getting any better, but evidently herceptin hangs around in the system for 6 months after the last dose. I hope we can manage this if it is going to go on that long. My neck and throat are painfully sore to the point where nothing helps.
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Bravo - so sorry to hear about your herceptin reactions. Hope your family doc's solution works. My infusion center wants me to take Benedryl each time to ward off allergic reactions.
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Hi everyone,
I'm new to these boards and so glad to have found this forum!
I finished Herceptin January 29, almost 6 weeks ago. I was in the Aphinity Trial, so also may have been getting Pertuzimab (perjeta) or a placebo. I did ACTH-- starting Herceptin (and possibly perjeta) with Taxol. I'm also on tamoxifen. Sometimes I'm not sure which SE are due to tamoxifen, Herceptin, or chemo or radiation, leftovers, or even reconstruction.
Side effects have included-- slow hair growth (though it's thick), weak nails, redness around nails, runny nose, general muscle cramps (often when I'm doing yoga), low TSH, lessened stamina (in the fall when I started running again- I felt I could not progress, so I took a break and do yoga and walk).
But the weirdest thing is itchy skin. During Herceptin I would get itchy sometimes in the week after treatment. But now that I've stopped Herceptin (and maybe perjeta) the itching has gotten worse- itching in arms, radiated area, legs, even scalp. and I'm wondering if it could be some kind of withdrawal reaction. It has been very dry because of the cold, and taxol was also rough on my poor skin, so it could just be coincidence-- but I am wondering if there are withdrawal effects when coming off these drugs.
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I just finished my 3rd (of 12 weekly) herceptin/ taxol infusions. So far it's been SO much easier than the previous AC regimen. I have the the runny nose, which I believe is from the Herceptin. Very dry skin especially on hands and fingers which I think is from the chemo. After the 12 weeks I will be doing herceptin every three weeks along with rads. Not sure what the radiation regimen will be as yet. I have a question re how anyone felt while on Herceptin and doing rads at the same time, and what side effects you had.
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I did rads & Herceptin at the same time. I really had no side effects from the Herceptin, and only some skin burning (over bony areas like collarbone & rib) toward the end of radiation. No fatigue, no aches or pains. I did a two-week hiking tour in Tuscany 6 weeks after radiation, while still on Herceptin. (This was a goal I had while going through the bad parts of treatment - surgery & chemo.)
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Hi Debic,
Congratulations on making it through AC! I did 4 rounds of AC then 12 weeks of Taxol as well. Taxol/Herceptin was much easier for me- I kept waiting for the other shoe to drop but it didn't-- the 12 weeks are grueling but at the same time it keeps you focused-- as my friend says- it's a marathon not a sprint. Congrats for having made it this far-
I was on Herceptin too. I did not have any side effects during radiation that seemed worsened by Herceptin. I was given a month off after taxol to let my body recover a bit and felt by the time I started radiation I was beginning to get some of my energy back. (I mainly used calendula cream on my skin which was fried especially through the use of the bolus (I had an UMX) - but my skin looks great now. This study evaluates the effectiveness of different creams for radiation http://www.ons.org/Research/PEP/radiodermatitis ). I began tamoxifen towards the end of radiation. I was so nervous but it was fine- had leg cramps but take magnesium and that helped a lot---
Now that I've finished Herceptin at the end of Jan I can see what side effects are Herceptin and what are tamox--
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Great to hear SE's are not bad on herceptin/rads. It's such a long road...very emotionally draining, so I'm hoping that it won't be too bad physically
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I have been on Herceptin for almost a year now. April 16 will be an exact year. I have also been on Perjeta along with the Herceptin. My doctor did not give me Perjeta this last treatment because I have been having awful side effects with sinus and throat issues. I am a professional singer and cannot deal with these issues. It has gotten much worse in the past few months. Each time I get the infusions it gets worse. It is like I have a sinus infection 24/7 . This causes post nasal drip and difficulty with singing. If anyone on this thread is a singer I would love to compare with you if you have any of these issues. So I went for treatment last Monday and just received Herceptin. I did not have the immediate reaction like I have an elephant on my chest, and the clogged ears, but I did get the runny nose and the sinus congestion. I read on this thread that someone said they were off Herceptin for 9 months and still have the runny nose? Thats interesting and discouraging. I will say the congestion was not as bad, but I still got it. It is causing me issues with singing still. I did have 5 taxotere treatments that started April of last year, and my final one was July 9, 2013. I can't complain too much considering. I am very holistic and took a lot of vitamins and supplements thru my treatment and still do. Some supplements I took made my hair stop falling out and I did not need a wig. I still had a head of hair. I cut it short but it thinned slowly and then stopped when I started taking Iron, Vit E, A, B-12, B-6(for the neuropathy) and high amounts of Vit c like 3000mg a day. My treatment showed remediation immediately as a matter of fact. I believe a healthy body will fight disease with traditional medicine faster than an unhealthy body. Keeping the immune system strong is key. My only complaints right now are the sinus issues. Im hoping to complete the year of treatment I was told I was only getting, but I am not sure. My doctor may want to keep me on herceptin longer. Hopefully the winter dryness will go away and possibly help with my side effects. If anyone on here also takes perjeta , Id like to know what you are experiencing.
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Had my first herceptin only infusion yesterday (after 12 weeks taxol/herceptin). Has anyone else had that UTI feeling/ constant peeing as a side effect ? I had that a couple times after AC chemo infusions as well, and am having it now. Did not have it while on the weekly regimen, so am wondering if the triple dose is the reason for it now.
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did anyone here switch from every 3 weeks to weekly ?? My heart is still above average but has dropped enough my doctor wants to try weekly !!
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I started Herceptin with Taxotere/Carboplatin in April 2013 & I'm going for #11 today. I have an Echo every three months but other than an interruption while I had surgery and then Adriamycin as a 2nd chemo course (which of course also can cause heart damage) I still go every 3 weeks. I noticed that LVEF has dropped from 65 to 59 but my MO said it would have to drop 10 more points before he got worried.
Annika - are you having Echos or MUGAs? What did your doc consider low numbers?
Deblc - I never had UTI symptoms. Hope you can sort that out. Most uncomfortable.
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Apparently UTI symptoms, although not common, CAN be a side effect of both chemo and herceptin.
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yes I have mugas every 3rd month. I started at a 72 and am now down to a 62, under 50 you can't get herceptin but if it drops more then 10 they usually stop. I had a big drop after an overdose
My doc wants to try weekly to make sure my heart stays where its at .0 -
Anyone have their doc say bone/joint/muscle pain is NOT from Herceptin?? I'm puzzled.
I
finished TCH with 2 rounds of Perjeta on Feb., 14, 2014. I've had
Herceptin alone, once every 3 weeks since then. I started having
joint/muscle pain around the time I started Herceptin alone. Had no
pain like that during chemo (except for body aches for a couple of days
after Neulasta, this isn't that). The pain is getting worse as time
goes on. Started in my legs, spread to my hips, fingers and toes.
Sometimes it wakes me in the night. I can feel it in the joints. I can't wear my rings. It's
worse with exercise. I've seen my Onc and primary care doc and both
have now referred me to rheumatology. I did have some blood work that
showed extremely low vitamin D (so now taking a supplement) and my SED
rate is 40. I'm worried. I'm supposed to start Tamoxifen but Onc has
agreed to hold off until after my exchange surgery. I am disappointed
she does not recognize this as a possible side effect of Herceptin. I see the Rheumatologist next week.0 -
Hi there. I will be starting herceptin in early july of this year with taxotere for. 3 rounds then just herceptin for the year. I'll post about SEs as they progress
Right now I'm waiting for round 3 of FEC which is scheduled for June 11
Sorry if this is a stupid question - is taxotere the same as taxol? I don't think so but see many referring to taxol
Tx and have a great day!!
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Chicklet - I have been taking Herceptin only since February. For a couple of days after each infusion I have mild headaches and joint pain in my knees. I now get an extra liter of fluid w/the Herceptin and it seems to help. Sounds like yours is much worse. Good luck with the rheumatologist. Hope you get an answer.
Footballnut - No, they are not the same - but sorry I don't know the difference. Somehow i think Taxol is "taxotere light", but that's just an impression.
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I had six txs of TC with Herceptin every three weeks, and just had my first Herceptin only infusion on Friday (two days ago)...The only side effect that I've noticed was unusual tiredness, but not like the fatigue that I have had since chemo. I feel like I could take a long nap at any time of the day ,whereas before I just felt like my muscles were tired and my legs were heavy. (still experiencing this, although getting better every day since the end of chemo! ) I also still have a runny nose, but my MO said that was from the Taxotere...the tear ducts were draining through the nasal passage, and that might last for a little while after, but not to worry as it will go away. I've had severe arthritis in my lower back for years, but no worse pain now that I am off the TC and Neulesta shots.
I heard my MO explain to another patient receiving Herceptin [only] that her red and WBC were low...yet, he told me that Herceptin would not have SEs .like chemo... She told me she had been done with chemo for 4 months, so this could not be a cumulative SE from the chemo. This worries me since my main problem through chemo was low WBC, and I ended up in the hospital because of it.
Anyone else have low counts on Herceptin only?
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Taxol is the older drug, Taxotere was developed during some work on improving Taxol. Taxotere is twice as potent as Taxol.
Depressed blood counts and peeling nail issues can continue on Herceptin, and these are listed as a potential side effects in the pharmacological literature.
For those with pain after Herceptin only infusions I would recommend slowing the infusion to 90 minutes minimum, if you have been receiving it faster. Infusion instructions allow a 30 minute infusion, but I personally had a dramatic reduction in leg and hip pain when I asked to slow the infusion back to 90 minutes (as was done during chemo) and have read anecdotally about others who experienced the same positive effect.
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