Good news and worry
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Good news and worry

› Forums › General Melanoma Community › Good news and worry

  • Post
    • July 30, 2017 at 7:41 pm
    thinkingofu
    Participant

    Hello everyone

    Just wanted to share some news with you. Thanks to your help and so much very useful information you have provided us with, doctors have agree to start my mom on Opdivo/Yervoy protocol. They will start with 4 IV doses of both, then move to Opdivo-only phase. Still waiting for BRAF results, so they said we may move to inhibitors after that. 

    My question is this. If it is not too much trouble, could you please share your personal experience with the protocol? How bad were the side effects? My mom cannot sleep and is crying all the time saying if it is not melanoma then side effects of treatment will get her. 

    I do not know how to help her. Maybe some of your experiences with side effects will help. 

    Everytime she reads your posts here she feels better. 

    Thank you so , so , so much xxx

     

     

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  • Replies
      • July 30, 2017 at 10:52 pm
      Jubes
      Participant

      That combo works well for many ppl. There was recently a post on here about someone who had 96 brain mets disappear with it. I am so happy your mum was able to access this treatment. The side effects differ for everyone as each immune system does something different. There are many posts here about what to expect but no side effects are as bad as the old chemo treatments, so perhaps console her with that. For many they hardly notice and just go on with their lives. I hope you mum is one of those. And I hope she is one of the responders too. 

        • July 31, 2017 at 7:56 am
        thinkingofu
        Participant

        Thank you, Jubes! And a big thank you from mum xxx

        • July 31, 2017 at 4:55 pm
        sister of patient
        Participant

        Can you find this post about 96 brain mets? I would really like to read it. Thanks.

        • July 31, 2017 at 7:28 pm
        jennunicorn
        Participant

        http://denver.cbslocal.com/2017/07/26/survivor-cancer-brain-tumors/

        Such a great story that can bring much hope to many of us.

        • July 31, 2017 at 11:02 pm
        sister of patient
        Participant

        This is amazing and what a hero his doctor is for trying. It would be great to know the whole story, all the treatment he's had. Fantastic.

        • August 1, 2017 at 1:22 pm
        cancersnewnormal
        Participant

        His name is Leland Fay. He has a website… 98braintumors.com   The news story released about him is a rather condensed version of his entire story. Leland has his cancer treatment history more mapped out on his site. He's a very friendly fella, and replies to emails quite quickly.  

        • August 1, 2017 at 2:30 pm
        sister of patient
        Participant

        Thanks for the link, that's great.

        • August 1, 2017 at 12:55 am
        thinkingofu
        Participant

        Wow…just wow. 

        • July 31, 2017 at 11:42 pm
        Sharon93065
        Participant

        This forum has been very helpful to me. I've had my 3rd Opdivo/Yervoy, 17 days until my 4th treatment. I am always worrying about the side effects but prayer has been answered and they have been minimal. Get prescription for steroid cream for rashes, take something like Allegra every day. The days I didn't take one i would get a bad rash in the middle of the night and not sleepl.  Be prepared to have fatigue. Beginning with 3rd treatment i was given thryoid prescription.  Counting the days until 4th treatment with no other side effects.  Your poor mom, I asked for xanax and only had to take it once when i saw my ALT/AST numbers rise and was afraid I wouldn't get 3rd treatment.  Feelling so hopeful after reading everyone elses posts. 

        • August 1, 2017 at 12:49 am
        thinkingofu
        Participant

        Thank you! We will do that! xxx

      • July 31, 2017 at 2:09 pm
      Gene_S
      Participant

      Hello,

      Side effects are different for everyone as we are all different.  Some get a lot of side effects and some get practically nothing.  My husband had Yervoy and had itching, fatigue, minor aches in his knees, his eyebrows turned white and they were very dark, some fever and chills but no major things like colitis.  He never had Opdivo or any other type of treatment.  He became NED (no evidence of disease) and has remained  like that for 5 years. He was 59 when he started his clinical trial.

      Judy loving wife of Gene (Stage IV and now NED for 5 years)

        • July 31, 2017 at 5:36 pm
        thinkingofu
        Participant

        Thank you for your reply! Great to read it worked so well x

      • July 31, 2017 at 11:59 pm
      Ridingaroundwith27Jennifers
      Participant

      Hi – I had over twenty tumors when I started Yervoy/Opdivo treatment.  I experienced mild to moderate fatigue after the first infusion and mild fevers which went away on their own.  After the second treatment it started out as more of the same.  Fatigue and mild fever.  Then I experienced very high fevers, letharygy, nausea and high AST/ALT numbers.  There was about a 5 day delay between when the fevers started and when the bloodwork showed the hepatitis.  One does of IV steroids and I was feeling so much better.  I was off treatment for 5 months and then went on nivo only infusions to deal with a brain tumor that popped up.  Also surgery and radiation.  Overall the Yervoy/Nivo shrunk two brain mets and all the body tumors except two.  The additional brain met which popped up started growing back and was seen on the 10 days post op MRI but the Nivo and radiation got rid of it.  I kept the guide by my chair and pretty much kept a watch for any symptoms which were on the list.  As soon as the doc knew about them they started treating them right away.

        • August 1, 2017 at 12:46 am
        thinkingofu
        Participant

        Thank you so much for sharing your story! You amaze me. 

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