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Discussions (39)
Primary Myelofibrosis: What is life going to be like now?
I was recently diagnosed at 76 years old. I have no symptoms at this time, however google tells me my prognosis is 3 to 5...
Any information om using CAR-T cell techniques to treat myelofibrosis
I read about using CAR-T cell techniques to treat myelofibrosis. The link to the information I saw is on the Blood Cancer UK website (The...
When to start worrying about blast percentage changes
I have myelofibrosis and my blast counts have normally been in the one to 2% . Today my blast count was 17%. Is that normal...
My husband has started taking Vonjo, has anyone taken Vonjo?
My husband has myelofibrosis. Was taking Vidaza it worked for a while. His Doctor started him on Vonjo, does anyone have experience with Vonjo.
Massive spleen and dangerous low platelet count
Myelofibrosis. Jakafi Hydrea Enrebic not the answer. Then what is. I am looking for years allready. not using any medicine at this stage
Chelation therapy
Patient with primary myelofibrosis with high ferritin levels and was recommended to start chelation therapy. Articles on deferasirox are just as scary as the problems...
Myeloproliferative neoplasm Anyone else have a similar diagnoses?
Bone marrow consistent with a myeloproliferative neoplasm and the differential includes essential thrombocythemia and primary myelofibrosis. MPL mutation testing is positive. No sustainable iron in...
Interferon-alpha impact on JAK2 allele ratio?
Anyone with Polycythemia Vera (PV) or Myelofibrosis (MF) with JAK2 verified mutation, please share with me your JAK2 allele ratios while taking Interferon-Alpha (INN). I...
Your tips as I prepare for first phlebotomy
Feb 9, first phlebolotomy (iron is low) Polycythemia Vera and Myelofibrosis - any helpful tips. I have problem with dehydration, (as teenager, I was hospitalized...
Chemo tablet or splenomegaly to reduce spleen enlargement?
https://connect.mayoclinic.org/discussion/chemo-tablet-or-splenomegaly-to-reduce-spleen-enlargement/
I have a very enlarged spleen from myelofibrosis. Diagnosed in early 2011, I have taken no medication, only specific supplements. Until recently, my Consultant said...
Getting rid of oral thrush: What works?
My mum has had essential thrombocythamia which has now progressed to myelofibrosis. Following a period where she's been very ill she has had the most...
Does Jardiance have serious interactions with Jakafi?
I have Myelofibrosis diagnosed 8 years ago, and have been diabetic for many years since chemo and radiation for breast cancer. I also have kidney...
After 3 months on hydroxyurea, I am going to ask to switch to Besremi
I was diagnosed with PV in March. When my hematocrit leveled off at around 44 after 10 weeks of phlebotomy, my hematologist put me on...
What's the expected trend and variance in blasts percentage?
I have Myelofibrosis. I am interested in any experience others have had with the trend in blasts percentage and in particular the variation in this...
F/w PV- JAK2-pre-mylelofibrosis SCARED to start Hydroxyurea. Help!
I am a 51 year old woman who was diagnosed with MPN with a JAK2 9 years ago at West Cancer in TN. They never...
Medicines for reducing fibrosis in polycythemia vera patients
I am a PV patient, currently age 50, JAK2 verified, producing a tremendous amount of red blood cells (started treatments at a 72% Htc). Besides...
Anyone experienced Bone Marrow Transplant with TP53 mutation?
After 10 healthy years, living with Essential Thrombocythemia w/JAK2 mutation and taking Hydroxyurea, my blood disease has transitioned into Myelofibrosis. I'm now taking Jakafi for...
Hypocellularity of 10-20% and moderate fibrosis in 25 year old?
Hi all, I recently had a bone marrow biopsy performed with the following results. The pathologist stated that I had a hypocellularity of 10-20% with...
New Dr different diagnosis
Hello everyone. I had written a month ago or so that I was trying to find a new doctor that deals with blood issues/cancers. Yay...
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