Home Forums Melanoma Diagnosis: Stage IV Symptoms and results post Reinduction of Yervoy

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  • #20544
    Gabsound
    Participant

    Hi,

    New to this board. I’ve been on MRF board about 18 months. I like that this board is set up for different stages and has a moderator.

    I’ve had 3 of 4 doses of Yervoy (this is second round- 1st round end dec htru mid Feb of this year). Last round I was doing radiation to rt groin lymph node basin and wound up w bad pain in both hips as well as couple of spots in the spine. First scan post 1st round of Yervoy showed spread to lungs, liver, bones (hips, left lower leg, sternum, spine). 2nd scan showed dramatic improvement- no lesions visible in lungs or spine, less lesions and less activity in liver. I remember the pain I had last round.

    3rd scan post Yervoy showed continued improvement but also one lesion growing in liver. Oncologist and I decided to restart Yervoy and he wanted to Cyberknife lesion in the liver. Unable to have cyberknife due to inconvenient location at dome of liver. I’ve had lots of pain since restarting the Yervoy. Pain in hips and spine (not as bad as last time). Bad pain in rt upper outer arm (negative x ray) and this weekend went to urgent care for bad pain in lower left chest when I take in a big breath. Nothing showed up on chest x ray. I’ve also had abdominal pain both right and left sides- tolerable. Sternum pain as well.

    I’m wondering if anyone else has had this kind of pain with Reinduction of Yervoy and how did your scans look?

    I feel like I could be getting pain due to the Yervoy fighting the melanoma and causing inflammation in those areas. Wishful thinking? I get 4 th dose next week and then will have scans 3 weeks later.

    Julie in Las Vegas

    #55883
    Catherine Poole
    Keymaster

    Hi Julie,

    Welcome. I’m sorry to hear about the pain you’ve been experiencing. I think I would push for scans now rather than later. I’m not sure these would be signs of the IPI/Yervoy reducing the tumors, but we can hope so. I still wouldn’t rely on just a chest xray. No one should suffer from pain, so I would urge your doctors to get on top of what is causing this. Maybe some experienced reinduction Yervoy folks will have some suggestions as well, we have a few on this board. Have you looked into ablation for the liver tumor? We had one patient who had that and is doing well. (here’s some info on that procedure: http://www.upmc.com/Services/liver-cancer/treatments/radiofrequency/Pages/default.aspx

    #55884
    NYKaren
    Participant

    Hi Julie,

    I did Ipi reinduction, only made it to 3 doses, as I experienced fairly severe colitis. The only pain I had was from the colitis. What does your onc say?

    all the best,

    Karen

    #55885
    Gabsound
    Participant

    NYKaren wrote:

    Hi Julie,

    I did Ipi reinduction, only made it to 3 doses, as I experienced fairly severe colitis. The only pain I had was from the colitis. What does your onc say?

    all the best,

    Karen

    Karen,

    This week my pain is good. No pain meds for the last 5 days. Fortunately I’ve had no issues w colitis. My Oncologist isn’t sure which way things are going to go. Just waiting it out. Fourth dose of Yervoy in 2 days, then scans in 3 weeks. I’m thinking pain will start up again once getting Yervoy this week. We will see. Right now enjoying no pain :)

    Julie

    #55886
    Gabsound
    Participant

    Update:

    Scans this week. MRI of brain thankfully clear. PET/CT was mixed results. Lungs are clear. Lots of new spots in the bones and still lots of liver lesions. Some of those are new, some are old and no longer taking up tracer. Again, oncologist says it could go either way when we rescan again in 5-6 weeks. In the mean time he is sending me to Angeles clinic to dr Hamid to talk about clinical trials. Dr Sam said Anti PD1 not on the very near horizon right now in Las Vegas, but he is still working on it.

    One lesion is my femur shows cortical thinning and scalloping putting me at risk for fracture. I went and got a regular x ray of the femur. Haven’t talked to dr about that result yet. I wonder if there is treatment for that BEFORE it fractures. Thankfully it doesn’t hurt at the moment.

    Maybe my next scan will be markedly improved, but if not we will be ready to start on next

    treatment.

    Julie in Las Vegas

    #55887
    Cecelia
    Participant

    Julie, my partner margaret completed two full rounds of ipi without any of the symptoms you have described, so I’m glad you’re staying on top of the scans. In both 1st and 2nd rounds, Margaret did not show any real improvement until two months after the last infusion, so keep the faith. It can take a while for the magic to work.

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