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update
we’ll I had THE meeting with my haematologist yesterday with my son supporting me. Our meeting lasted the best part of 2 hours (!) during which we thrashed out many of the uncomplimentary things I had said about him. It never needed to escalate to the level it did if he had explained that Claire Harrison
we’ll I had THE meeting with my haematologist yesterday with my son supporting me. Our meeting lasted the best part of 2 hours (!) during which we thrashed out many of the uncomplimentary things I had said about him. It never needed to escalate to the level it did if he had explained that Claire Harrison
beetle
in
MPN Voice
1 year ago
Rusfertide...
I haven't come across any dialog about this drug on this website. It popped up on my many searches for additional info about treatment for Polycythemia Vera. It is currently in phase 2 of a clinical trial at Stanford University and so far, results with patients have been good. It sounds like
I haven't come across any dialog about this drug on this website. It popped up on my many searches for additional info about treatment for Polycythemia Vera. It is currently in phase 2 of a clinical trial at Stanford University and so far, results with patients have been good. It sounds like
K-itty
in
MPN Voice
1 year ago
Myelofibrosis and fedratinib
Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as I am now over 70 and resident in Scotland, that is no longer an option for me. No transplants available for the over 70s apparently. I had been
Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as I am now over 70 and resident in Scotland, that is no longer an option for me. No transplants available for the over 70s apparently. I had been
Bullace
in
MPN Voice
1 year ago
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Life beyond Myelofibrosis
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
Scaredy_cat
in
MPN Voice
1 year ago
introducing myself...
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
jmcasbar
in
Leukaemia Support
1 year ago
Besremi
I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
K-itty
in
MPN Voice
1 year ago
Jakafi
I'm to start on Jakafi soon, after not being able to tolerate HU. Are some of you on this site currently on Jakafi and what side effects have you experienced? Weight gain, fatigue, hair loss, high cholesterol? How long before you began noticing side effects after starting the RX? What were your
I'm to start on Jakafi soon, after not being able to tolerate HU. Are some of you on this site currently on Jakafi and what side effects have you experienced? Weight gain, fatigue, hair loss, high cholesterol? How long before you began noticing side effects after starting the RX? What were your
K-itty
in
MPN Voice
1 year ago
Ruxolitinib plus Hydrea
Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and hydrea can be combined. Was on hydrea for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both. Has anyone tried
Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and hydrea can be combined. Was on hydrea for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both. Has anyone tried
Mudmaker
in
MPN Voice
1 year ago
While on Watch and Wait
When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see the oncologist , who order the Leukemia/Lymphoma Eval. and a Flow Cytometry test. It sounds like some Doctors only order the test when
When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see the oncologist , who order the Leukemia/Lymphoma Eval. and a Flow Cytometry test. It sounds like some Doctors only order the test when
Sillysand
in
CLL Support
1 year ago
Progress update - Pirtobrutinib triple trial for treatment naive
I finished Cycle 4 of the fixed duration Pirtobrutinib combo trial at M.D. Anderson for Pirtobrutinib, Obinutuzumab, and Venetoclax on June 13, 2023. https://clinicaltrials.gov/study/NCT05536349?tab=table In addition to the usual blood tests - CBC, differential, metabolic, electrolyte, and immunoglobulin
I finished Cycle 4 of the fixed duration Pirtobrutinib combo trial at M.D. Anderson for Pirtobrutinib, Obinutuzumab, and Venetoclax on June 13, 2023. https://clinicaltrials.gov/study/NCT05536349?tab=table In addition to the usual blood tests - CBC, differential, metabolic, electrolyte, and immunoglobulin
SeymourB
in
CLL Support
1 year ago
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
CLL and Hyperthroid
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
Hidden
in
CLL Support
1 year ago
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
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
ET accelerated progression
I now need to be treated to try to halt progression to
acute
leukaemia
and if successful followed by a bone marrow transplant. this has come as rather a shock Is anyone else going through this?
I now need to be treated to try to halt progression to
acute
leukaemia
and if successful followed by a bone marrow transplant. this has come as rather a shock Is anyone else going through this?
Smdg
in
MPN Voice
2 years 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
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
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
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
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