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Energy levels, and new pains
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Energy levels, and new pains

› Forums › General Melanoma Community › Energy levels, and new pains

  • Post
    • November 13, 2018 at 12:04 am
    ScaredPartner
    Participant

      This is my first post, but have read many.

      the person I’m writing on behalf of is stage 4. Metasis just about everywhere. Multiple lesions on liver, spleen? Lungs, pelvic area bones, and brain. 

      He has undergone 4 rounds of ipi/nivo, and one round of nivo. Had radiation early on, about 2 months ago.

      latest scans showed that he is responding to treatment, which is astonishing. 

      Now, he feels worse than he has in months. Energy is at an all time low, and pain throughout his body.

      I’m curious if anyone has experienced this even after finding out things are working. Tumors have shrunk by up to 30-50% in most cases. Just one stubborn one on the brain that is stable.

      there was a discussion of steroids a few weeks ago, but doctor decided against it because he was responding so well, and they didn’t want to mess with the treatment. 

      Anyone else that has gone through this? any stories would be appreciated.

       

      thanks!

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    • Replies
        • November 13, 2018 at 11:24 am
        Bubbles
        Participant

          Sorry for what you and your husband have been going through.  Immunotherapy can cause pain (arthralgias) and fatigue.  Additionally, the effects are cumulative…meaning worse over time…for many of us.  I am glad that most of your husbands disease is responding.  Immunotherapy takes time…so slow but sho is good.  You mentioned that your husband had radiation a couple of months ago.  I hope it was to the brain met!!  If it wasn't, then I would be asking about that.  

          We have tons of data regarding the benefits of combining targeted radiation (like SRS or gamma knife)  WITH immunotherapy.  Here is a link to a zillion posts/articles on the topic:

           https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy  

          Additionally, should your husband require it for side effects, steroids can help a patient on immunotherapy deal with side effects and does NOT decrease response.  Here are a zillion posts/articles related to side effects and their treatment:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=side+effects+to+immunotherapy+  

          As to the question ~ Are there those whose tumors respond to treatment, save one?  Yes.  It makes no sense.  Isn't easily explained, but yes.  You can look at "Jubes" story here on this board.  I have a dear one who recently had to deal with a persistent tumor when all others had resolved.  So…..what to do about that?  Well, at this point, it seems your husband could watch and wait….as long as the brain tumor has already been treated with radiation and remains stable.  Jubes and my friend opted to have their persistent tumors surgically removed.  Some have used intralesionals if the tumor was located in an area that was accessible for injection.  Radiation can be used in the brain AND the body and some opt for that. (There is a report on just that included in the link I gave you above.)  Yes, melanoma sucks big green hairy wizard balls and is very, very sneaky.

          I hope this helps. I wish you and your husband my best.  Celeste

            • November 13, 2018 at 6:06 pm
            ScaredPartner
            Participant

              Thank you, Celeste.

              The radiation was to the pelvic region as the pain had become crippling. The oncologist was trying to avoid radiation on the brain until we saw if they responded to the immunotherapy, which most have. A few have completely disappeared, others shrank. We are currently watching the last, and will have the radiation discussion again after next set of scans. We only have a gamma knife where we live, and are looking into the possibility of traveling for a cyber knife.

              It’s all very overwhelming at times. I love the learn about all aspects of the treatment, and the cancer itself, but as much as I learn, it still won’t change the outcomes of the scans. 

              Thank you so much for all your information.

            • November 13, 2018 at 5:26 pm
            mandyjill
            Participant

              I had the extreme fatigue and extreme pain in my muscle, joints and bones while on Opdivo/Yervoy.  I tried Celebrex, but it didn't help at all.  So the doc put me on a low dose of prenisone (10 mg. per day) and it completely took care of my symptoms.  I couldn't believe how fast it worked.  I asked my doctor if it could affect the benefits of the immunotherapy, but he said it wasn't a big enough dose to hurt the benefits of the immunotherapy.

              • November 13, 2018 at 8:22 pm
              marta010
              Participant

                HI Erin – extreme fatigue can be caused by adrenal insufficiency and is a common side effect from immunotherapy.  I'd recommend checking thyroid, cortisol, etc. checked asap.

                Take care.

                Ann

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