Essential Thrombocythemia and myelofibrosis

m_azingrace
m_azingrace Member Posts: 399
edited September 2023 in Rare and Other Cancers #1
Hello. I am a regular visitor in the breast cancer forum. Now my husband has been diagnosed with cancer. His report reads "The differential diagnosis mainly includes essential thrombocythemia and early stage of myelofibrosis".
He is scheduled to see the oncologist/hematologist on March 15th.

I would like to know some questions we should ask at that time. Here are some that we've already thought of:
Can this be genetic, and should we tell our kids to get tested?
What kinds of treatments are typical for this condition?

Thanks in advance for your kind responses. God Bless. Gracie

Comments

  • sylvias
    sylvias Member Posts: 3
    Myelofibrosis
    Hi!

    My husband has been diag. with primary Myelofibrosis in August 2009. That is in the same family from what I can understand. His Hemotologists told him that they are doing studies on it and do not believe that it is genetic but not possitive. Usually this starts in early stages like your husband but in our case it is blown into Myelofibrosis. We are trying to get into clinical trials right now but don't know for sure. His hemogl. is at 10.5 and platlet count is at 650,000, white count is 22,000. Doing a lot of praying and doing everything at home to help, like eating right,rest and he has an enlarged spleen that is about double sized. Hope everything goes well and will be praying for you too.

    Sylvia
  • m_azingrace
    m_azingrace Member Posts: 399
    sylvias said:

    Myelofibrosis
    Hi!

    My husband has been diag. with primary Myelofibrosis in August 2009. That is in the same family from what I can understand. His Hemotologists told him that they are doing studies on it and do not believe that it is genetic but not possitive. Usually this starts in early stages like your husband but in our case it is blown into Myelofibrosis. We are trying to get into clinical trials right now but don't know for sure. His hemogl. is at 10.5 and platlet count is at 650,000, white count is 22,000. Doing a lot of praying and doing everything at home to help, like eating right,rest and he has an enlarged spleen that is about double sized. Hope everything goes well and will be praying for you too.

    Sylvia

    Hello Sylvia
    Thank you so much for responding. This certainly seems like a lonely disease. Right now my hubby seems to be doing well. The medicine is bringing his platelet count down. It was at one million, but now is down to the 400,000 range. I don't know what the hemogl. is, or his white count. At this point, there seems to be little attention being paid to the myelofibrosis. Maybe that's because he has no symptoms, but we know it's there from the bone marrow biopsy. When I see the oncologist again, I want to ask him if there are any trials being done here that he can participate in. Our doctor is with the MD Anderson Cancer and Research Center, which gets great reviews in the medical community.
    Thanks for the thoughts and prayers. Right back at'ya. Gracie
  • Miles' mom
    Miles' mom Member Posts: 33 Member

    Hi Gracie. What med is your husband on? hydroxyurea?

  • Shayrn
    Shayrn Member Posts: 2 Member

    My husband has had Myelofibrosis for 16 years now. It has progressively advanced over the years so now he has more ill effects from it. He was diagnosed by a bone marrow biopsy after going to the ER for shortness of breath (caused by his hugely enlarged spleen pressing against his lungs). When they finally removed the spleen, the Dr said it had gotten so big the edges of it became necrotic, died, and pieces fell off it. So they spent 4 hours scraping dead spleen tissue off his abdominal organs.

    Then he got complication after complication, ending up in the hospital for 3 full months. What a nightmare. He's been on Hydrea since diagnosis which has helped a lot. As the disease progressed, Gleevec was added. He's now more tired and his bones hurt all the time. The disease has increased the Uric Acid in his blood so he has bouts of painful gout now too.

    It's been a long battle with this blood cancer, but he's still fighting a good battle. He's my Rock, especially important since I was just diagnosed with endometrial cancer 2 months ago. We both go to the same Cancer Clinic for treatment, always together..