First IPI/NIVO Side Effect. Could this be a positive sign?

This topic has 12 replies, 7 voices, and was last updated 3 years, 6 months ago by THMoore.

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- September 18, 2020 at 12:12 am
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THMoore
Participant
All fellow warriors,
I had 4 NIVO infusions, with no side effects other than some tiredness. After my 3 month scan, nodal tumors in my neck had decreased in size, some went away and all were no longer active in the PET scan. But I developed several MM nodules in my lungs, again that we’re not active in the PET, and a 2.5 CM liver tumor developed. Decision was made to put me on IPI/NIVO combo. Now 7 days post my first infusion, I have developed a measles like rash over my upper body. Front and back. I am hoping this is a good sign. As most of you who know me, I am looking for anything positive. I am kinda of excited to actually have a side effect. Is that crazy? Makes me think, something is happening, right or wrong. I would appreciate any experience all of you warriors have had.

Thanks,
Trent

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- - September 18, 2020 at 1:33 am
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  Daisy2018
  Participant
  I don’t think it’s crazy. I m new to this whole melanoma thing. I saw an oncologist yesterday Who I really liked and we discussed treatment options. He said if you have side effects like this consider It as like winning a golden ticket meaning that your body responds to the treatment.
  I would consider it a good sign. Keep us posted
  - September 30, 2020 at 11:27 pm
    
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    THMoore
    Participant
    
    Thanks Miss A.
    I need a oncologist like yours.
    
    Trent
- - September 18, 2020 at 2:39 am
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  AMcReader
  Participant
  Hi Trent, I have also always had the same complicated thought process with side effects…thinking that they were a good sign! That being said, I think the data has shown that side effects or not do not necessarily indicate response (I think the one exception to this has been vitiligo…but I have vitiligo and as you know I’m still dealing with a recurrence). I say that not to discourage you, but to bring you comfort that you don’t need to feel anxious about not having a response to Ipi/Nivo just because you did not notice any immediate side effects. I dealt with really bad liver toxicity on Ipi/Nivo and because of that had to make the decision not to go back on Nivo as a monotherapy, which probably hurt my long term response.
  
  Further, I would absolutely view your response to Nivo as a response and now all you need is that extra boost of Ipi to get your immune system really knocking these things out. I’ve always tried to view it as adding one more tool to the toolbox. You’ve got this!
  
  Onward we go!
  Amanda
  - September 30, 2020 at 11:29 pm
    
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    THMoore
    Participant
    
    Thanks for talking to me Miss Amanda. I want you to know, you got this.
    
    HUGS,
    Trent
- - September 18, 2020 at 2:55 am
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  Mark_DC
  Participant
  Dear Trent,
  
  I kind of agree with Amanda; that said I think some side effect is a good sign – rash is skin and melanoma is skin cancer so it means (probably) your immune system is attacking your skin and ideally the tumour.
  I did develop rash (after some time) but also progressed but not that quickly – so probably it shows the medicine is working, I hope well enough
  
  I know you are action and results oriented, and I hope you succeed, but I also hope you can relax (not easy) and try not to worry too much. Make the most of life, realise how precious it is and how blessed we are. For your disease, make sure you have a melanoma specialist and one you trust or who is imaginative and will not give up. And take second opinions if necessary. It seems to be a totally random disease and while some people follow the textbook and are cured quickly, some others dont respond at all, many of us are in the middle. I hope the small nodules and the liver tumour disappear – it seems you do respond so I hope all of them respond too!
  
  Good luck I wish I could help more
  Mark
  - September 30, 2020 at 11:31 pm
    
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    THMoore
    Participant
    
    Thanks Mark. I hope you are doing well and conquering this beast.
    
    Trent
- - September 18, 2020 at 12:56 pm
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  Johnjk04
  Participant
  Hello TH, all that I can share is my experience. In 2012, I had melanoma in the brain and spread pretty thoroughly thru my body. Started the very first Ippi / Nivo trial soon after.
  After my first infusion, the rash was over my chest and sides. I itched for two years. Bottom line : cancer free for eight years now. Just visited my oncologist a couple of days ago,
  he told me next year, one set of scans and then he will stop seeing me. My opinion of your situation, you are on the road to recovery.
  - September 30, 2020 at 11:36 pm
    
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    THMoore
    Participant
    
    Thanks John,
    I am so praying you are right. You rock.
    
    Trent
- - September 23, 2020 at 1:22 am
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  Summer S.
  Participant
  Hi Trent,
  
  It is definitely not a negative thing, and it means the medicine is doing something around your body, crossing fingers and toes it clears out all the melanoma in your body
  
  A quick tip about rash, everybody here swears by oats bath. They run water though a bag of oats and soak themselves in the tub for a little while. It eases the pain.
  
  Please stay super hydrated, it is crucial when you have rash. Also mentor your kidney and liver functions. Cause rash kinda dries the body of fluids.
  
  Love,
  S.
  - September 30, 2020 at 11:35 pm
    
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    THMoore
    Participant
    
    Thank you Miss Summer. I appreciate you taking the time to talk.
    
    HUGs and prayers coming your way,
    Trent
- - September 24, 2020 at 3:58 am
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  MelMel
  Participant
  I had the rash too on my torso although it did not itch and after 3-4 weeks disappeared but was followed by temperature and a drug induced liver injury. So basically we are all guineapigs because there are no fast set rules in any of this. The key is that you are responding and your immune system is activated.
  Remain positive and I’ll keep my fingers crossed.
  Melanie
  - September 30, 2020 at 11:34 pm
    
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    THMoore
    Participant
    
    Miss Mel,
    We are for sure guineapigs and statistical numbers. As you know, MDA misdiagnosed me, costing me several options. So I am always looking for support from this team.
    
    Much HUGS and prayers,
    Trent