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Prefibrotic Myelofibrosis and I hate Hydroxyurea (HU)
Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Apple238
in
Leukaemia Support
1 year ago
Prefibrotic myelofibrosis and I hate hydroxyurea (HU)
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238
in
MPN Voice
1 year ago
Bone Pain
I was diagnosed with CLL/SLL in 2019. I have the usual fatigue all the time along with a few other issues. Now, I am having bone pain in my rib cage. It’s in my lower center ribs and along the edges of the bottom of my ribs but hurting worse on each of my sides and center bottom of my ribs. has anyone
I was diagnosed with CLL/SLL in 2019. I have the usual fatigue all the time along with a few other issues. Now, I am having bone pain in my rib cage. It’s in my lower center ribs and along the edges of the bottom of my ribs but hurting worse on each of my sides and center bottom of my ribs. has anyone
Willowbug
in
CLL Support
1 year ago
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Ruxolitinib Versus Best Available Therapy for Polycythemia Vera posted by Manouche
Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not better organized, I'm not top of my game these days): Rux is looking similar to IFN for allele reductions (My Dr sort of said "I told you so") This like most other Rux studies have been handicapped by selecting for HU intolerant
Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not better organized, I'm not top of my game these days): Rux is looking similar to IFN for allele reductions (My Dr sort of said "I told you so") This like most other Rux studies have been handicapped by selecting for HU intolerant
EPguy
in
MPN Voice
1 year ago
Chemotherapy for pv
Apparently I have 7%
leukaemia
cells within my bone marrow. The course of treatment they are suggesting is a month in hospital on aggressive chemotherapy.
Apparently I have 7%
leukaemia
cells within my bone marrow. The course of treatment they are suggesting is a month in hospital on aggressive chemotherapy.
Georgehb
in
MPN Voice
2 years ago
Ruxolitinib Versus Best Available Therapy for Polycythemia Vera Intolerant or Resistant to Hydroxycarbamide in a Randomized Trial
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to myelofibrosis. In MPN, unlike other hematologic malignancies, for example
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to myelofibrosis. In MPN, unlike other hematologic malignancies, for example
Manouche
in
MPN Voice
1 year ago
How can chromosomal and mutation abnormalities in chronic MPN inform clinical decision making?
Another interesting post from MPN Hub. Discussion of the three driver mutations and the importance of using the more sensitive tests to diagnose patients with low allele burden. Also discussion regarding prognosis. https://www.youtube.com/watch?v=jb9dJILZWGQ
Another interesting post from MPN Hub. Discussion of the three driver mutations and the importance of using the more sensitive tests to diagnose patients with low allele burden. Also discussion regarding prognosis. https://www.youtube.com/watch?v=jb9dJILZWGQ
hunter5582
in
MPN Voice
1 year ago
I have Polycythemia with Jak 2 Mutations and /Thrombocytopenia
Hi I wonder if someone could please advise me x I’ve recently been started on I tablet 500mgs of Hydroxycarbamide a day x I’m in a new relationship and I wondered is it okay for intimate relations or should I be using some sort of protection for my partner? ie condoms? we are both early 60’s x
Hi I wonder if someone could please advise me x I’ve recently been started on I tablet 500mgs of Hydroxycarbamide a day x I’m in a new relationship and I wondered is it okay for intimate relations or should I be using some sort of protection for my partner? ie condoms? we are both early 60’s x
fairytabu
in
MPN Voice
1 year ago
mood and cll
Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience with O and V trial. It was time consuming and quite a process, but I focused and just did what I had to do. Fast forward to my LAST bone marrow
Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience with O and V trial. It was time consuming and quite a process, but I focused and just did what I had to do. Fast forward to my LAST bone marrow
Gardengirl44
in
CLL Support
1 year ago
Momelotinib Found Superior to Danazol for the Treatment of Myelofibrosis
Clinically significant improvements in myelofibrosis-associated symptoms, anemia, and spleen response were achieved with momelotinib, compared with danazol, in patients with myelofibrosis. These findings were published in The Lancet. Danazol has often been used to treat patients with myelofibrosis,
Clinically significant improvements in myelofibrosis-associated symptoms, anemia, and spleen response were achieved with momelotinib, compared with danazol, in patients with myelofibrosis. These findings were published in The Lancet. Danazol has often been used to treat patients with myelofibrosis,
PhysAssist
in
MPN Voice
1 year ago
Chorea and PV
Hi - I don't post very often but I thought that this might be worthy of sharing. It is second hand experience as it is my mother who suffers with Polycythaemia vera (PV). She is 86 and is taking Hydroxycarbamide for PV (amongst other medications). Around a couple of years ago my mother started to experience
Hi - I don't post very often but I thought that this might be worthy of sharing. It is second hand experience as it is my mother who suffers with Polycythaemia vera (PV). She is 86 and is taking Hydroxycarbamide for PV (amongst other medications). Around a couple of years ago my mother started to experience
PFR1937
in
MPN Voice
1 year ago
What to do ….
He also said I had markers for high risk for
leukaemia
. I didn’t ask what the markers were, I’ll do that next week. He said it would probably be several years before this happened. Since then I have asked to be referred to Professor Harrison at Guys, still waiting to hear about that.
He also said I had markers for high risk for
leukaemia
. I didn’t ask what the markers were, I’ll do that next week. He said it would probably be several years before this happened. Since then I have asked to be referred to Professor Harrison at Guys, still waiting to hear about that.
lizzziep
in
MPN Voice
1 year ago
Discovery of a signaling feedback circuit that defines interferon responses in myeloproliferative neoplasms- Published: 01 April 2022
This gets a little deep, but nonetheless may explain some things:
Abstract
Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs
This gets a little deep, but nonetheless may explain some things:
Abstract
Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs
PhysAssist
in
MPN Voice
1 year ago
Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/SLL CLL Society Education On-Demand: Replay
Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/SLL CLL Society Education On-Demand: REPLAY below https://youtu.be/E1sc_YT4u_g - [i]Each person who is diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL/SLL) has a unique set of genetic biomarkers
Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/SLL CLL Society Education On-Demand: REPLAY below https://youtu.be/E1sc_YT4u_g - [i]Each person who is diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL/SLL) has a unique set of genetic biomarkers
lankisterguy
Volunteer
in
CLL Support
1 year ago
Dosing Jakafi
After 2 years on Hydrea for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time. When I started they were 620ish, 2 weeks later 702, Then yesterday they were 820. Now doc wants me to go to 15mg twice daily. I’ve been feeling
After 2 years on Hydrea for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time. When I started they were 620ish, 2 weeks later 702, Then yesterday they were 820. Now doc wants me to go to 15mg twice daily. I’ve been feeling
George1976
in
MPN Voice
1 year ago
'Astonishing' Results: Skip Salvage Chemo, Go Straight to HSCT from ASH 2022 [For Refractory AML/Relapsed AML]
NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
PhysAssist
in
MPN Voice
1 year ago
Shocking Price of Jakafi
So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. I have been having lots of side effects from Hydrea, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which
So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. I have been having lots of side effects from Hydrea, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which
dogsandhorses
in
MPN Voice
1 year ago
Full blown PV now
I was diagnosed with Jak2+ PV back in January 2020. At that time, I didn't have high RBC, Hemaglobin, or hematocrit. I had high platelets, high WBC, basophilia, and eosinophilia. My hematologist said she was calling it PV rather than ET due to the high counts other than my platelets. She was completely
I was diagnosed with Jak2+ PV back in January 2020. At that time, I didn't have high RBC, Hemaglobin, or hematocrit. I had high platelets, high WBC, basophilia, and eosinophilia. My hematologist said she was calling it PV rather than ET due to the high counts other than my platelets. She was completely
Lena70
in
MPN Voice
1 year ago
IDH2 R172 Linked With Improved Survival in Myeloid Neoplasms from April 14, 2023 Hematology Advisor- More r/t AML than MPNs- look below it..
Among patients with myeloid neoplasms
including
acute myeloid leukemia (AML), IDH2 R172 mutations (mR172) appear to be linked with improved overall survival, and moreover represent a distinct clinical disease subtype, according to research published in the American Journal of Clinical Pathology
Among patients with myeloid neoplasms
including
acute myeloid leukemia (AML), IDH2 R172 mutations (mR172) appear to be linked with improved overall survival, and moreover represent a distinct clinical disease subtype, according to research published in the American Journal of Clinical Pathology
PhysAssist
in
MPN Voice
1 year ago
Jakafi’s generics: Possible delay in the entry?
»The patent expiration in mid-2028 might be the most significant obstacle to JAKAFI’s supremacy in the polycythemia vera treatment market. To address this, Incyte introduced the LIMBER (Leadership in MPNs and GVHD BEyond Ruxolitinib) life-cycle management initiative, which was meant to explore different
»The patent expiration in mid-2028 might be the most significant obstacle to JAKAFI’s supremacy in the polycythemia vera treatment market. To address this, Incyte introduced the LIMBER (Leadership in MPNs and GVHD BEyond Ruxolitinib) life-cycle management initiative, which was meant to explore different
Manouche
in
MPN Voice
1 year ago
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