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Herceptin Side Effects?

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  • jo6359
    jo6359 Member Posts: 2,009
    edited January 2019
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    I use the generic form of Claritin the non-drowsy. And I rarely ever experienced any muscle pain. Good luck to you.

  • LKinKC
    LKinKC Member Posts: 41
    edited January 2019
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    Hi, I haven't posted for a long while but the side effects after this Herceptin infusion have been the worst. Muscle and joint pain had to dig out the heavy duty pain meds. I have only 5 more till finished. Do you think claritin will work better than Allegra? Any body take benadryl before infusion. Putting together my own premed none given at my center for just herceptin. Praying for the best outcome for everybody.


  • jo6359
    jo6359 Member Posts: 2,009
    edited January 2019
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    LKinkc- my very first herceptin and perjeta infusion started with Benadryl. I refused the Benadryl because I was going to work afterwards. My MO informed me he always prescribed Benadryl right before h&p but it was my choice if I did not want to take it. Prescribing Benadryl infusion right before h&p is his protocol. I've always taken the Claritin 3 to 5 days prior to the infusion and muscle pain has been minimal. I don't know if I just got lucky or if it has to do with the Claritin. You sound as you are in severe pain. Your situation is very different. I hope you're able to find something which works for you.

  • ingerp
    ingerp Member Posts: 1,514
    edited January 2019
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    LK I thought it was just me. I had an H only yesterday that really knocked me for a loop. No pain but I ended up taking two naps in the afternoon. I still have six left—I swear I’m handling them worse every time. I took generic Claritin before but haven’t thought to take Benadryl, mostly because I have to drive myself home afterwards. And I just made plans to take myself away for the weekend after my last H. Wondering how I’ll get treatment and then do a three-hour drive. :-(

  • Cascadians
    Cascadians Member Posts: 72
    edited January 2019
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    All of you experiencing pain -- I hear you. It is now 10 days from my 1st 3x/dose of Herceptin and it is still socking it to me with intense muscle pain. Shoulders and back are excruciating. Did the 12 Herceptin/Taxol weekly and was starting to get very achy shoulders but thought it was the Taxol. I messaged MedOnc and he's agreed to slow next Herceptin to 1 hour, give Pepcid, Decadron and Morphine pre-meds, and I'm going to take Tylenol and Claritin 1 hour ahead of time along with the numbing cream <-- 1.5 hours ahead works best for me for the cream.

    Imperative to do all the Herceptin treatments and am now scared that the pain is so intense because I need to keep going.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169
    edited January 2019
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    I didn't experience horrible pain with Herceptin, but I did have some weird problems with later infusions. I think that we anticipate it being "easy" - especially compared to chemo. Keep listening to your body and informing your providers!

  • jo6359
    jo6359 Member Posts: 2,009
    edited January 2019
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    chose not to take Benadryl infusion because I had to work after h&p. I was very lucky I had minimal SEs. My MO believes the peripheral neuropathy is a combination of the taxotere and the herceptin. It's been minimal but it has been increasing. The gift that keeps on giving.

  • Cascadians
    Cascadians Member Posts: 72
    edited January 2019
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    The shoulder and back pain were bad this morning so I took 2 Advil. Later in the afternoon I finally tried Claritin. Wow, it actually worked! All the stiffness and pain went away. About 8 hours later it's starting to creep back. Hope the Claritin keeps working; I will now take it every day. Thank you everybody for that suggestion.

  • fairchild
    fairchild Member Posts: 138
    edited January 2019
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    Folks, I'm new to this thread and have a lot of questions. I've read as much as I can take in (chemo-brain) so forgive me if I am a little repetitive. I have finished my chemo (Carboplatin & taxetere) about a month ago. I've also been on Perjeta and Herceptin since I started chemo, but I'm continuing those 2 alone until Sept., a year from starting chemo.

    What I didn't expect were symptoms from Perjeta and/or Herceptin, because I understood that the chemo were the drugs that really made you sick. And about a week after getting Perjecta and Herceptin alone, I've been hit with really severe diarrhea, lie 5-6 times a day, along with gut pain. I've also had really severe pain in my back, about kidney level, so severe I've taken pain meds from onc for it. Also fatigued beyond belief....and I just went back to work halftime, so I don't know how much of this is work vs the meds, you know? Also having the running eyes and nose, but I knew to expect that.

    The pain, diahhrea, and fatigue are so hard I'm worrying about being able to function at work. So far I'm coming home after just 4 hours and sleeping right away until 9 or so, and then going straight to bed.

    Any ideas what's causing this? Can it be an effect of these meds, even though I took them before with chemo? And is there anything I can do about these side effects? Does Claritin help? What about the diarrhea? I've lost 4 lbs in about 3 days.

    Sigh. Just when you think you're over the worst.......

    Thanks for any insight you have.

  • Cascadians
    Cascadians Member Posts: 72
    edited January 2019
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    Fairchild, the severe back pain, and the gut pain, and runny nose, are the Herceptin. Also fatigue.

    Immodium works for the diarrhea. Claritin, Tylenol and Advil help with the back pain -- but it is SEVERE and nothing really gets rid of it completely. I also have it in shoulders and it's awful. The diarrhea went away for me after a few months.

    Think my MedOnc is going to give me morphine for the back pain, it's that bad. I normally never take any pain meds, and was astonished how my first 3x/dose of Herceptin clubbed me with a baseball bat.

  • ingerp
    ingerp Member Posts: 1,514
    edited January 2019
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    Fairchild I am really sorry but have read that Perjeta is pretty bad in terms of the “big D”. My system tends to run pretty fast but I’ve never had an issue with Herceptin only. I hope your SEs start to get better.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169
    edited January 2019
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    I had a lot of problems with diarrhea with the Perjeta. It seemed to increase over time. They were not continuing it past the first six rounds back when I got it and I was glad to be done.

    I ended up taking Imodium on a schedule to prevent it. That worked for me. If you track your symptoms - you should be able to figure out a plan.

    Also - keep in mind that returning to work is a big adjustment on many levels. That is most likely contributing to your exhaustion. Be gentle with yourself.

  • jo6359
    jo6359 Member Posts: 2,009
    edited January 2019
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    I have one more h&p treatment left. I never had any real issues with diarrhea during chemo or herceptin and perjeta. During the past 3 months I've had more episodes with loose stool but I take one Imodium and everything is fine. I've had a couple of episodes where I've taken 2 Imodium before it's corrected. No back pain, no muscle or bone pain. Slight increase in neuropathy. I do take generic form of Claritin NonD 3-5 days prior to treatment and several days after treatment. I've been lucky. I do feel for you guys. If you are taking morphine for pain maybe you should ask your oncologist to decrease the dosage. It's horrible you're suffering so much. None of this is fun.

  • fairchild
    fairchild Member Posts: 138
    edited January 2019
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    Thank you all so much for this information. I honestly had no idea that these meds could be responsible for these symptoms. I finally got the diarrhea under control with immodium, but I will see my ONC in a few days to ask what the overall plan will be for dealing with these side effects.

  • nowaldron
    nowaldron Member Posts: 40
    edited January 2019
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    Hi Fairchild,

    I have been on H+P for almost three years. The only SE's I have experienced are diarrhea and fatigue. I am Stage IV so I will be on them both forever. My onc told me to take an Immodium every day to try and stem the D and it has worked. I had chemo in Feb 16 for six months and have been on H+P since then as well. I am still working full-time (teaching), but I do make sure I get plenty of sleep. My students laugh at me, but I am in bed by 8 p.m. 

    Best wishes to you for good health,

    Nancy

  • fairchild
    fairchild Member Posts: 138
    edited February 2019
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    Thanks, everybody. My oncologist said that it didn't make sense that the Perjeta and/or Herceptin were responsible for my gut pain and diarrhea, given that I didn't have severe diarrhea during my chemo, when I was also getting them. He thought I had a bug.

    And yet....the same day I saw him, I got another infusion of those two. Like clockwork, I started feeling sick 5 days later, and by the 6th day I had to call in sick at work. I lost 4 lbs over a single day, was probably a bit dehydrated, so I drank as much water as I could. It lasted a shorter period of time-- 3 to 4 days, but I was miserable. I can slow it down with Immodium and I have morphine on board for the pain (I have a pain syndrome all these drugs increase), but I just generally feel sick.


    I'm not looking forward to another 7 months of this!

  • jo6359
    jo6359 Member Posts: 2,009
    edited February 2019
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    Fairchild-My MO inform me herceptin and perjeta could cause severe diarrhea. I was very fortunate I only had a few incidents of diarrhea. My biggest side effects with herceptin and perjeta has been some neuropathy in my toes which taxotere also contributes to. And occasionally I have severe leg muscle cramps. It's only a couple times a week but when I have them it's extremely painful for 10 to 15 seconds. If you're experiencing so much pain you need to take morphine plus severe diarrhea could you suggest to your doctor if it's possible to adjust the dosage? Overall, I found herceptin and perjeta to be a piece of cake. A little neuropathy and occasional leg cramp. Good luck.

  • Beatmon
    Beatmon Member Posts: 617
    edited February 2019
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    I’m Stage 4 so on H&P until something changes. I’ve probably posted this before...but due to always feeling like I had a slight case of the flu my onc. and I decided to try 1/3 dose of Herceptin weekly over an hour and the Perjeta over 90 minutes every 3rd week. This regimen has made an amazing difference in my energy, pain and overall well being. I was with a breast friend this weekend who commented how much better I seemed since when we were last together 8 months ago

    Last night as I was itching all over and I was scratching my arms wondering why I was itching so badly I went duh, I had Herceptin this morning! Chalking that up to chemo brain.

    Docs that deny any SE are not listening to their patients.

  • fairchild
    fairchild Member Posts: 138
    edited February 2019
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    Thanks, y'all...This is really helpful. So I called the NP for my oncologist because the same symptoms happened after the 2nd round of Herceptin and Perjeta, and described the problem to him. He said that he thought it was definitely those meds, b/c in his experience, side effects can emerge at any time. I'm better now, by the way...this round it only lasted about 4-5 days. He said to get Immodium on board before I have symptoms next round by starting it on Day 3 and to see if I can control it that way. The description of a slight case of the flu is a good one. I think that's exactly how I feel and it's hard to explain. I hate that this is happening, b/c I thought I'd feel better after finishing chemo! I guess I do feel better-- I'm not as sick as I was then-- but I'm still losing weight at a pretty alarming rate. I didn't see the doc and I hate to ask him to lower the dose if I can manage through this, b/c I know these meds have real benefits. So I'll do my best for now to make it work., Thanks for helping so much!

  • WC3
    WC3 Member Posts: 658
    edited February 2019
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    I think I have developed Paronychia from the Herceptin. The universe looked down upon me and thought “Runny nose only...Nope! Too easy! Runny nose AND nail infection!”

  • jo6359
    jo6359 Member Posts: 2,009
    edited February 2019
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    WC3-Funny but sad. My nose continues to run. My nails are disgusting to look at. They are constantly breaking and prone to infections. Oh what fun, I go to the nail salon once a month to try to trim up my raggedy Nails. Thanks for making me smile

  • WC3
    WC3 Member Posts: 658
    edited March 2019
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    joe6359:

    Mine break too but I think that is from the chemotherapy. They break at thr chemo lines in the nail bed about 3mm from the top. Sally Hansen has not saved me. But I can see a big indentation in all of my nails which is now 3/4 of the way to the top and I think that represents the final chemo infusion and then it looks like it's smooth sailing for the finger nails from there on out.

  • shree
    shree Member Posts: 1
    edited May 2019
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    Hello All,

    My Mom had the surgery of mastectomy and Oncologist has schedule 8 chemo along with 12 herceptin and radiation, she had completed 3 chemo and doc has told us to start herceptin after 4th chemo for weekly (like 1st herceptin on 1st june and next on next week 8th june and so on), I want to ask you all- is herceptin good to apply weekly? and in which case doc suggest hercptin weekly, her 1st herceptin dose is greater then rest of the dose of herceptin.

    Note- she has BP, diabetes and thyroid ( all medicines are going on).

  • ingerp
    ingerp Member Posts: 1,514
    edited May 2019
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    Herceptin is typically given with Taxol for 12 weeks, and then every three weeks for the balance of a year. It's currently an IV drug in the US, although is given subcutaneously in some parts of the world.