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Bone Marrow Transplant

Hi, I'm EDMOND J E.

I received a bone marrow transplant on Aug 31, 2020. Overall I feel pretty good, occasional diarrhea but overall okay. One thing I am experiencing though is pain in my shoulder joints, neck and lower back. Severe enough that I am sometimes unable to sleep at night. Has anyone out there experienced anything like this? Right now I am at day 79.
Thank you.

  • Post #1
  • Wed Nov 18, 2020
I'm M. Winn, and I'm a survivor of Bone Cancer

I have too many platelets with a mutation and get so tired. Even with my chemo my numbers stay high. Yet I have had this (bone marrow test 1991) has showed I basically have had this forever. Numbers have been up and down my whole life, now 77. They say because of my age I need the chemo, not real sure of that

  • Post #2
  • Wed Jun 2, 2021
Hi, I'm Hunter5582

That sounds like Essential Thrombocythemia. Usually caused by one of three mutations, JAK2, CALR, or MPL. Once we hit age 60 (or 65) we are considered high risk for thrombosis due increased risk with age. The normal protocol is for cytoreduction and anti-platelet therapy (usually aspirin). If you are on chemo, that sounds like hydroxyurea, which is one of the first-line treatments for ET. It is not the only option. Pegasys (PEGylated Interferon alpha 2a) is also considered a first-line treatment option. Ruxolitinib is also an option for some.

I used to have ET, but it progressed to Polycythemia Vera abut 8 years ago. Had ET since my mid-30s. I have been on and off HU, but most recently can no longer tolerate it. I am now taking Pegasys, which agrees with me far better. it is also the only treatment option we have that appears to be disease modifying. For some people with PV it can induce hematologic and molecular remission. It is superior in preventing progression into myelofibrosis/acute myeloid leukemia for people with PV. There is hope that a newer form of interferon called Besremi (ropegylated interferon alpha 2b) will be FDA approved soon for PV. It is also in clinical trials for ET. If approved for ET, it will be the first drug FDA approved for ET in the USA. It will be a good option to have.

All the best to you.

  • Post #3
  • Thu Jul 15, 2021
Hi, I'm erin

I was diagnosed with ET after I formed a nasty clot in my liver the end of 2019. I have the JAK2 mutation and I am on HU, Xyrelto and aspirin daily. With this form of cancer I feel like everything I look up is vague. I mean I’m not sure I should even call it cancer even though I see an oncologist and take chemo. I have been through the shock and awe of other cancer diagnosis with loved ones. Severe treatment, surgery, everything on a fastpaced time line. This just seems so….matter of fact. I just wish there was more information.

  • Post #4
  • Sun Aug 29, 2021
Hi, I'm Susan B

I was diagnosed with ET in 2017 after my having labs done with my PCP and he sent me to a hematologist. I then had a bone marrow biopsy which showed I have the JAK2 gene mutation. I was on Aspirin 81mg until March when I started HU at 65 yo. The dose has been adjusted several times since then. I feel tired all of the time, but seems to be the only side effect at this time. It is in some ways a mysterious disease to me even as a nurse. There seems to be a lot of vague information and the best thing to do is to speak to your doctor. I am glad to find this discussion because I don’t have anyone to talk to about this who understands what it’s like to go through this.
Thank you

  • Post #5
  • Wed Sep 15, 2021

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