Side effects
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Side effects

› Forums › General Melanoma Community › Side effects

  • Post
    • March 4, 2018 at 12:06 am
    foothillfella
    Participant

    I'm in the midst of taking Mekinist and Tafinlar, for two weeks, in preparation of Opdivo/Yervoy immunotherapy. The side effects of the pills have been primarily fatigue, fever, extreme chills and shivering, aching joints and muscles, especially hips and lower back, difficulty sleeping. About 5:15 Wed. morning, I was on my knees, with dry heaves.

    I'm trepidatious about the potential side efffects of the Opdivo/Yervoy treatment. Most seem to be diarrhea and fatigue, but many others alre all over the place. What is the experience of this group?

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  • Replies
      • March 4, 2018 at 12:17 am
      Bubbles
      Participant

      Hi Foothill,

      Sorry for what you are dealing with.  Yes, side effects to all melanoma treatments are a mixed bag and vary from person to person.  Here is a basic primer of melanoma treatment I put together that you might find helpful:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

      The side effects to all immunotherapy:  Ipilimumab (Yervoy) and the two anti-PD-1 products:  Nivolumab (Opdivo) and Pembrolizumab (Keytruda) are along the same lines…though a bit worse with ipi.  Ipi is the bad boy of side effects in the ipi/nivo combo….but you only have to have 4 doses before you go on to nivo as a single agent.  Even when folks aren't able to take all the ipi doses due to side effects….they are usually able to tolerate nivo alone rather well AND respond about as well as folks who do manage all the doses!!!  As to what the side effects of immunotherapy are….I put this together a bit ago (it addresses nivo specifically…but it applies to all):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html  

      Hope this helps.  There is a great deal more information about all of the above on my blog.  Just use the search bubble if you are interested.  Plus, this forum is filled with lots of smart caring melanoma peeps.  Hang in there.  You can do this!  I wish you my best.  Celeste

        • March 4, 2018 at 1:24 am
        foothillfella
        Participant

        Celeste, knowing the primary culprit is the Yervoy, and it goes away after four treatments, is very helpful. Thank you, for that. Thank you for getting back to me, so quickly. I look forward to reading your stuff and learning more.

        Blessings,

        Todd

        • March 4, 2018 at 3:59 pm
        Gene_S
        Participant

        Todd,

        Yervoy does not affect everyone the same.  My husband was on a clinical trial in March 2011 with Yervoy (then called Ipi) and GMCSF.  He had some fatigue, achy joints, fevers and of course the bad Ipi itch.  When he was on it for the 12 initial weeks they also had maintenance doses that you took every 12 weeks.  In July 2012 he became NED and continued the Ipi and GMCSF until Dec. 2013.  He has remained NED for over 5.5 years.  The Ipi strength  he was on was 10 mg/kg.

        So don't get worked up about it as he took the Ipi for 2 years and 9 months with no colitis side effects.  Everyone takes things differently and he was 59 when he started his treatments.  He became stage IV in Oct. 2010 with lesions in his lungs, liver and an unresectable lesion at the Cervical spine up at the C1 and C2 level.  If you would like to read more about his journey you can read his profile.

        Judy the loving wife of Gene

        • March 4, 2018 at 1:30 am
        foothillfella
        Participant

        Celeste, just looked at your treatment essay. When I was first diagnosed and treated (surgery only), I passed on the subsequent treatment, Interferon Alpha 2B. The doc said there was no proof that it worked or didn't work and that I would be sick, with flu-like symptoms, for a year. I said, no thanks. I suspect my cancer would have returned, regardless.

        The aggravating part is that the largest tumor, in my lung, was observed 21 months ago, by at least a radiologist and my oncologist, even though I had a history of metastatic melanoma. My now former oncologist said he thought it was scar tissue. Now, it's 23 mm x 16 mm. Argh.

        • March 4, 2018 at 2:25 am
        Bubbles
        Participant

        I'm with you.  When diagnosed in 2003, as Stage 3b, cutaneous melanoma with a positive node…there was no treatment other than interferon available for me…and I passed on it as well.  It was clear, even then, that the side effects there were horrible and there was little to no benefit.  I have no regrets.  Yet, in 2010 I had lung and brain mets.  Sadly, without a melanoma specialist…even diagnosis can be difficult.  I went for over 6 months with "something" in my lung that "couldn't possibly be melanoma" because "melanoma doesn't look like that".  Well, yes, melanoma can look exactly like that.  Horrible and irritating and WRONG as all that is…we are in a position to only look forward.  Move forward.  Hang in there.  You can move forward, too!  Keep pushing.  Keep asking questions as you need.  c

      • March 4, 2018 at 1:34 am
      Ridingaroundwith27Jennifers
      Participant

      I had only mild fever (99F) and fatigue after the first treatment of Yervoy/Opdivo.  After the second I had mild fever and fatigue but then for a few days was OK.  About 4 days before the third treatment I got a 104F fever and nausea.  Turns out it was severe hepatitis.  I was hospitalized for 4 days and then sent home.  Finally my bloodwork showed my AST/ALT numbers were off and they were able to put me on steroids and then I was so much better.  It took a while but they got is under control.  The tumors responded well and although the treatment wasn't a walk in the park it wasn't really that bad.  I'm currently on Opdivo every two weeks and have no side effects other than fatigue and itching.  

      I was very nervous about starting treatment but it really wasn't so bad and it worked.  It got rid fo two brain mets and 25 additonal tumors.  Try not to worry too much.  Yervoy/Opdivo was a miracle for me.  Hopefully it is for you as well.

      Good wishes to you,

      Jennifer

      • March 31, 2018 at 5:31 pm
      AlizzeTaylor
      Participant

      Sadly, without a melanoma specialist…even diagnosis can be difficult.  You can do this!  I wish you good luck.

      Here is the link Yahoo Tech Support which Always tries to solve the issue related to the Email problem.

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