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Myelofibrosis w/ JAK2 mutation

Blood Cancers & Disorders | Last Active: Mar 30, 2023 | Replies (39)

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@susanvij

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have any information about this condition, please help us.

Short history: 6 years ago he was diagnosed with ET and has been taking hydroxyurea since then. Now, he is experiencing symptoms of Myelofibrosis. The doctor did a bone biopsy and has officially diagnosed him with Myelofibrosis with CALR mutation. We would like to know if there is a specific drug that will work on him. Any information will be helpful and greatly appreciated!

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Replies to "Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have..."

Hi, I,too, took Hydroxyurea for years to combat high platelet count. About three years I was diagnosed with Myelofibrosis. Am now ,and for the past two years have been taking Jakafi 15 mg.tabs twice a day. I see a Hematologist every month for blood check ups. Keep in touch with group. Strength in numbers .

Thanks for the response. I'm happy to hear the medication is working for you. I, too, hope they find a drug that will work for him as well.

Hello @susanvij,

Teresa, @hopeful33250 has provided some great information, and I would also encourage you to look at this recent article (Mayo Clinic New Network) about a new drug that has demonstrated potential value in treating patients with myelofibrosis: http://mayocl.in/1Ux3Hqq

You may wish to view this discussion in the Cancer group on Connect, too;
Myelofibrosis* http://mayocl.in/2n28k2Y

I also hope @jfinlay, @djr, @gouldh, @memy, @gael, @bjsdancer, @rcand10s, will return with some more insight for you to help your brother.

@susanvij, what symptoms does your brother have?

Thank you! He has all the symptoms except Splenomegaly. He already had two blood transfusions in two mouths period. He is very weak and recently experiencing fever. The Dr's in Chicago said there are no drugs that will work on him since he has CALR mutation. The only option is bone marrow transplant. We have an appt coming up in march at Mayo. Hope they can give us some good news.

@susanvij We are all certainly wishing him well too! Teresa