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Thread: Severe ITP (low platelet count) as side effect of Nivolumab treatment

  1. #1
    Newbie New User
    Join Date
    Aug 2017

    Severe ITP (low platelet count) as side effect of Nivolumab treatment

    About a year ago my mother was diagnosed with stage IV metastatic kidney cancer. After first-line treatment with Pazopanib had failed, she was put on Immunotherapy with Nivolumab in March. Despite a favorable initial response, the treatment was suspended after just three months due to unusually low levels of platelets in her blood.
    Her doctors suspected ITP, a rare side effect for patients receiving Nivolumab. About two months ago my mother started taking high doses of Prednisone and – after ruling out disseminated intravascular coagulation (DIC) - she also received two days of intravenous immunoglobulin (IVIG) treatment.
    Unfortunately, her platelet count continues to drop. Yesterday her oncologist decided to reduce her Prednisone doses to 0 over the next two weeks because it triggers serious side-effects and simply doesn’t seem to be working.
    My mother’s oncologists have been saying for weeks that they feel “stuck”. In the Netherlands where she’s being treated, there’s just one known case similar to my mother’s. This patient responded much better to Prednisone.
    The only option we’ve got left is to wait for my mother’s immune system to stop causing platelet destruction, which might never happen. Meanwhile, her growing tumor is not being treated and she has an increased risk of fatal bleeding due to the low levels of platelets, which are supposed to help the blood clot.
    Although the whole situation renders me powerless, I somehow refuse to believe that “this is it”. My mother’s oncologists are excellent, but they’re only human and they are probably too busy to spend hours researching treatment plans for each and every patient.
    In short, it cannot be ruled out that my mother’s oncologists are overlooking relevant cases from outside the Netherlands. If you have any information about similar cases that might be even remotely beneficial to my mother’s treatment, please let me know so I can show it to her doctors.

  2. #2
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Sorry to have to welcome you to the forum and certainly can understand how worrisome the situation is with your dear Mom.

    This being said, our Kidney Cancer forum is not very active but we do have others who have been on Nivolumab or currently receiving such treatment. My understanding, though it shows much promise with certain types of cancer, it is not a cure but can provide more survival lengths than non-treatment alone or when first line treatment has failed to show favorable response to tumor reduction.

    Since we are not doctors here on this forum but a group made up of those diagnosed, caregivers and loved ones, I am not sure if we can provide answers to your direct questions. I will move your post to the Kidney and Bladder Cancer forum in hope someone may be able to chime in with suggestions on what your next course of action can be.

    Please accept my sincere thoughts of strength to both you and your dear Mom.


  3. #3
    Newbie New User
    Join Date
    Aug 2017
    Hi Lisa, many thanks for your kind words and for redirecting my post to the appropriate forum. All the best, Marcel

  4. #4
    Hi Marcel,
    We are at MD Anderson now. My husband has Lymphoma and ITP. They give him bags of platelets (IViG) which sends them up for awhile but they crashed to 6,000 yesterday. It looks like maybe a splenectomy in the future...if that works. I'm praying it will resolve some how. Best wishes to you and your Mother....God bless....
    His fight is over. How brave he was. 47 years of love.

  5. #5
    I hope you are still here, Marcel. My husband has ITP that won't resolve. Sometime this week they will be removing his spleen to try to resolve this. I found this link that explains it.
    I don't know if this can help your Mother or not. It not firbsure it will resolve my husband's ITP. I pray it does. He has so far received $72,000 worth of platelets. We have insurance and that's a blessing.
    I hope and pray they can help,your Mother.
    God bless.....
    His fight is over. How brave he was. 47 years of love.

  6. #6
    Newbie New User
    Join Date
    Aug 2017
    Dear Marian, apologies for not responding, I didn't see your messages up till now. My mother's condition deteriorated very rapidly after my initial post. She passed away two weeks ago - less than a week after I wrote my post in utter despair.
    Her last platelet count was 19,000, measured a week before she died. She received IVIG for two days in the second half of July and started taking 120mg of Prednisone daily around that time. According to the doctors, platelet transfusion was never an option because she was also a thrombosis patient. The doctors' best guess was that her low count was caused by platelet destruction rather than problems with the bone marrow, which is why she never received a biopsy. She probably wouldn't have agreed with a biopsy anyway. I'm not sure why the doctors didn't consider a splenectomy. I'm left with many questions like that.
    I hope your husband's surgery went well and that his platelets have started to recover. All the best to you and your husband, Marcel

  7. #7
    My condolences on the death of your Mother. It saddens me.
    My husband will receive his splenectomy probably next week. They tried radiation and an infusion of Rituximab but it didn't help. So, we nervously await the splenectomy. When he recovers he will have a week of chemo. Then they a PET scan in three months barring any problems. Things had to be put off until we got through Hurricane Irma. They gave him platelets before the storm so we wouldn't have to drive through the storm in case his platelets plunged. It was a good thing because the storm flooded the Clinic and hospital with 4 feet of water. This was not fun but we are thankful,to,God for his blessings.
    Again, my condolences to you about your sweet Mother.
    His fight is over. How brave he was. 47 years of love.


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