Mayo Clinic Connect
Found out i have Mylofribroses, curious about whats involved in the stem cell therapy and wonderig who has gone through it and what the survival % is and how the producer is improving
My husband has also been diagnosed with Myelofibrosis, started on Jakifi a week ago, no side effects yet, hopefully none will show up. Spleen enlarged, no appetite, lots of weight loss, fatigue and being tired all the time. Would like to get any information from someone else who has this rare bone marrow disease. Also life expectancy. He is 83 and has been told 4 t0 5 years depending on certain criteria. His age is against him for a bone marrow transplant or surgery to remove his spleen. Any input will be greatly appreciated from anyone.
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I have post essential thrombocytosis Myelofibrosis . I had thrombocytosis for 10 years and now for the last 3 years I have Myelofibrosis . I take Jakafi (ruxolitinib). I am 71. There is no cure as of yet . Jakafi helps keep the red blood platelets under control but does not control my white cell count which is sometimes high. I have had minimal side effects such as fatigue. But recently my spleen is slightly enlarged and slightly tilted. I am slightly fatigued . The worst side effects have been recuring non melinoma skin cancer with six Mohs surgeries and more to come. Another minor side effect is weight gain . So it is important to eat healthy and be active . Meditation is also helpful . Be positive and grateful for each day and surround yourself with loving family and friends .
Welcome @gael! I’m sure @bjsdancer will appreciate having another member to connect with about myelofibrosis.
Gael, what do you do to stay active and to help manage the fatigue?
Regarding staying active . I take short walks daily . I am looking into water aerobics and I have done light yoga. I have done qigong which if I kept it up would be restorative . I lack discipline ! I rest when I feel tired for short periods. Getting a good night sleep is important. I take vitamins : prescription potassium , vitamins c,calcium, D3,and B3 for my skin . B12 would be good too, but I have time for only so much ! Best medicine for me – laughter….and I am a painter. The creative process is vital for me . I work to stay positive . I hope these ideas are helpful.
Liked by Colleen Young, Connect Director, aunamichelle
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