Mayo Clinic Connect
Anyone out there wishing to discuss above diagnosis?
Hello @wellness3070 and thanks for beginning this conversation. Please share with us your interest in this disorder. Is this a recent diagnosis for you? We look forward to getting to know you better and having others share with you from their experiences as well.
Hi @wellness3070. I’d also like to introduce you to other members who have myelofibrosis or are caring for a family member who does. @rcand10s @gael and @bjsdancer will you join us in welcoming our newest member?
Wellness, I echo Teresa’s question. When were you diagnosed? Are you in treatment?
Liked by Teresa, Volunteer Mentor
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I was diagnosed with myelofibrosis about 4 1/2 years ago. I formerly was diagnosed with essential thrombocytosis which I had for about 10 years . I am considered “stable ” currently, and am at a moderate level of myelofibrosis . 4 1/2 years ago my medication was thus changed .
@I was diagnosed about 4 1/2 years ago . My main medication is ruxolitinib or jacofy . I am at a moderate level and considered stable . I take other meds as well.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
Thanks for reply. I, too, am on Jakafi and have been treated for condition for about 3 years. My basic side effects are decrease in RBC production and a low Hemoglobin, causing chronic leg weakness. Otherwise, stable.Are other meds related to myelofibrosis ?
I was treated for high platelets for years,About three years I was diagnosed with myelofibroma by my hematologist and started taking Jakafi to decrease the fibrosis.My condition has been stable over these many months, but have a low RBC and Hemoglobin reading. As a result, my leg weakness has been constant and my endurance has decreased.I’m curious re. the effects with other patients.Look forward to continuous discussions.
Connect members @jfinlay, @djr, @bijou have discussed Jakafi in the past as well; you can view that discussion here: http://mayocl.in/2iPBxwp
I would also encourage you to watch this video of Dr. Ayalew Tefferi discussing potential new drugs for treating Myelofibrosis as well:
@wellness3070, there seems to be a range of treatments offered to people with myelofibrosis besides medication: blood transfusions, radiation therapy, chemotherapy, surgery to remove the spleen (splenectomy), bone marrow transplant. Have you and your doctor discussed any one of these as a possibility?
Liked by Teresa, Volunteer Mentor, mjsumms
The other meds are for keeping blood thin- plavix . And others for preventing stroke. I also have a prescription for potassium .
I have no physical symptoms – aches or pains , just fatigue , which fluctuates . My RBP and WBC are low , but not dangerous .
How old are you ?
Hi, Aware of other treatments, but nothing other than Jakafi B.I.D.is now treatment of choice. Anemia and leg weakness still chronic problem.
Unfortunately, research shows that muscle weakness can be one of the side effects; however, here’s some more information form Mayo Clinic, about treatment of anemia in myelofibrosisi: http://mayocl.in/2iPMnSZ
My wife was diagnosed with MF 4 months ago due to MPL mutation. We just heard antiproliferative, proteolytic enzymes like those in VITALZYM (serrapeptase)(World Nutrition, Inc.) may be helpful in ameliorating Myelofibrosis. Does anyone have any info/insight about this? Steve
Why am I losing so much weight?
Welcome to Connect, @dot65.
I moved your message to this discussion so you could meet others who are talking about myelofibrosis, like @heartspace @wellness3070 @rcand10s @gael and @bjsdancer.
Dot, you asked about weight loss. Some people do experience unintended weight loss. How is your appetite? Have you spoken with a dietitian?
Liked by Kanaaz Pereira, Connect Moderator
I couldn’t find any evidence-based mentions of serrapeptase being used to help treat myelofibrosis. I found no mention of it in the National Center for Complementary and Integrative Health (NCCIH) database. A few members like @steve1948 @hishamhussain and @marzz have mentioned using it for lung conditions with varying success (or lack thereof).
Have you spoken to your wife’s doctor about it?
hEHello out there. My name is Nancy Bush (shortshot80,net) I arrived on the Mayo Clinic site because I have 2 types of Lung Cancer. My son who will be 62 in August has been diagnosed with Jak 2 a little over a year ago. He has since been unable to work in his profession ( Plaster Contractor. Some one told him that perhaps this could have been contracted by “radiation”. What causes this disease? Is there anything he can do besides take this “(Hydroxyurea caplets? His body hurts all the time and his doctor tells him that he isn’t supposed to have any pain… But he does and cannot get any pain pills. At this time he doesn’t have any money/insurance to go to another doctor. Also just some information ## son’s second wife has lung cancer mastized to her lymph nodes. and his first wife died of “melanomah”. Any answers would be appreciated.. Nancy
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