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.
Colleen Young, Connect Director | @colleenyoung | Jan 5, 2017
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?
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.
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 .
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?
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 ?
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?
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.
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?
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?
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 ?
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?
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
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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.
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1 ReactionHi @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?
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Like -
Helpful -
Hug
2 ReactionsI 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 .
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Like -
Helpful -
Hug
2 ReactionsThanks 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 ?
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Like -
Helpful -
Hug
2 ReactionsI 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.
-
Like -
Helpful -
Hug
2 ReactionsHello @wellness3070,
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?
-
Like -
Helpful -
Hug
6 ReactionsThe 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 ?
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Like -
Helpful -
Hug
1 ReactionHi, Aware of other treatments, but nothing other than Jakafi B.I.D.is now treatment of choice. Anemia and leg weakness still chronic problem.
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Like -
Helpful -
Hug
2 ReactionsHi @wellness3070,
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
-
Like -
Helpful -
Hug
2 ReactionsMy 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