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Need help please

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  • Post
    • September 30, 2019 at 4:34 am
    sks2019
    Participant
    Posting for my mom, she recieved her ipi/nivo combo 3 weeks ago and she was running fever 100 to 101 for last two days along with body aches , most severly in the thighs and lower back, she is almost immobile. , nurse advised to give her mortrin which we did, but today she is running 102 I will call the oncologist tomorrow morning. I am hoping this is not creating any permament side effects or effecting any organ.

    Has anyone experienced this before and how did you dealt with it ? How long does these side effects last ? She is having her second round on Oct 7 and I hope she can take it. She is very de motivated by all these side effects and wants to stop the treatment. She was very healthy and active before this combo started and never felt sick before.

    Please pour in your experiences.
    Thanks a ton !

Viewing 6 reply threads
  • Replies
      • September 30, 2019 at 11:54 am
      Affected
      Participant
      Hi Sks,

      I’m very sorry to hear about your mother. My husband will begin his immunotherapy shortly, so I don’t have any experience with any side effects yet. However, we were both required to go to an information session with an oncology nurse who explained the possible side effects. She did emphasize that if my husband had any really bad side effects such as the ones you have described in the case of your mother, and if we couldn’t get a hold of the oncologist, I should then take him to the hospital’s A&E department.

      Melanoma came into my life just in June of this year, so my knowledge is very limited; however, I think I may have read in some studies posted by some of this forum’s members that having side effects can be a sign that the medicine is working; that the patient is responding to the treatment. I pray that this may be the case with your mother.

      Hang in there. Stay positive. Don’t lose hope.
      Affected

        • September 30, 2019 at 4:43 pm
        sks2019
        Participant
        thank you for replying . so thankful for this group
      • September 30, 2019 at 12:07 pm
      Affected
      Participant
      Hi Sks,

      Just a quick note on the meaning of “A&E”. It is the abbreviation of the “Accidents and Emergencies” Department of a hospital in Ireland. I’ve been away from the United States for quite a number of years, and I forgot that this department is called “ER” (Emergency Room) in the United States.

      Affected

      • September 30, 2019 at 12:26 pm
      Hukill
      Participant
      I ran fever for 6 weeks. I learned that if I took motrin every 2 hours on the dot it kept the fever away. If I missed it by even 15 minutes I went through horrible chill and sweat cycle. It did go away after 6 weeks.
        • September 30, 2019 at 4:44 pm
        sks2019
        Participant
        Thanks for replying, Were you able to get the next round of infusion while you were experiencing this ? I am concerned she might not be able to take the second infusion which is next week.
        • September 30, 2019 at 5:46 pm
        Hukill
        Participant
        I did spend 3 days in the hospital as they checked for every type of infection known to man and finally determined it to be just a side effect. Through all the side effects I had I never missed a treatment, 5 combos and 52 nivo over 26 months.
      • September 30, 2019 at 2:11 pm
      JudiAU
      Participant
      This is a very helpful guide to combo side effects, including what to watch for and what to act urgently. https://www.aimatmelanoma.org/wp-content/uploads/AIM-OPDIVO-YERVOY-MULTIPAGE-1.pdf

      It sound like you treat the fever and follow up with nurse.

        • September 30, 2019 at 4:45 pm
        sks2019
        Participant
        Thanks JudiAU , keeping my fingers crossed. My mom was such a healthy person before this all started and it just breaks her down emotionally to be going through this. Cant thank this group enough.
      • September 30, 2019 at 5:24 pm
      sks2019
      Participant
      Talked to the nurse he suggested to do Blood culture , regular blood work and urine analysis and based on that they will determine next steps.
      Will keep everyone posted. More so documenting for anyone who needs to search for it in future.
      • September 30, 2019 at 5:44 pm
      MelanomaMike
      Participant
      Aaaah! Fevers suck! Please God cool down her body to a normal 98! (Its 98° right?) As you know sks, i also did the Ipi/Nivo combo but didnt have a fever, i had everything but! 6 days after 1st infuse i began vomiting, appetite was getting worse, head pounding, it all got worse over 10 days but no fever though, in hind sight, what occured after my first Ipi/nivo infusion, my Pituitary Gland was failing and became Kentucky Fried! Horrible 10 days of PURE HELL but i hung in there thinkin this was how its gunna be, Kaiser ER wasnt much help by the time i threw in the towel, they said i was fine! I lost 20lbs in about 10/12 days, i didnt eat anything! My wife saved me, she brought home Megace (Megestrol) an appetite stimulant that her client used (shes a caregiver) Max was his name, he said go for it! Give him some!! Within 48hrs i was eating again and i got better after my Endocrinologist diagnosed me Cortisol insufficient,…..i hope your Mom can keep going with the combo, maybe your oncologist will issue a “pause” then monitor her blood & vitals til shes healthy enough to start back up for number 2!?? Bless her heart though, being of an older age doesnt help the situation but, if she can find the mental strength along with a good report to continue, she needs to do this! Ip and nivo is a VERY good med…prayers your way….
        • September 30, 2019 at 9:20 pm
        sks2019
        Participant
        Thanks Mike, Hope you are feeling better after your latest scan results. Positivity sure helps to fight it. Nurse is still thinking it is viral as my mom sweats out after every mortrin. Did the blood work and the results will be in tomorrow. Hopefully she comes out of it soon.
      • October 1, 2019 at 5:20 pm
      sks2019
      Participant
      Updating this thread with the latest on my mom;s condition. Her blood work is all normal but urine analysis reveals a UTI ( Urinary tract infection ) , She is prescribed antibiotic for three days and we have been asked to watch her. If the fever doesn’t subsides then she will go to clinic to do some more urine culture.
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