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Update on BMB
The final conclusion was “persistent MPN with idiopathic
myelofibrosis
”. Best wishes to all.
The final conclusion was “persistent MPN with idiopathic
myelofibrosis
”. Best wishes to all.
Cja1956
in
MPN Voice
3 years ago
Just started taking Pegasys for myelofibrosis
I'm 41 female, Jak 2+, prefibrotic MF. I recently started taking Pegasys. I'm 3 injections in. One of my main symptoms of the disease has been numbness in my hands and that seems to be much better immediately after starting. But now I have been having significant aching in my joints of my hands which
I'm 41 female, Jak 2+, prefibrotic MF. I recently started taking Pegasys. I'm 3 injections in. One of my main symptoms of the disease has been numbness in my hands and that seems to be much better immediately after starting. But now I have been having significant aching in my joints of my hands which
Emmyroos
in
MPN Voice
3 years ago
Myelofibrosis Treatment Option
Topics of discussion at this virtual event include: • Clinical data supporting a treatment option for patients with intermediate-2 or high-risk
myelofibrosis
• NCCN Clinical Practice Guidelines surrounding use of a treatment option in
myelofibrosis
• Safety, adverse event management, and dose
Topics of discussion at this virtual event include: • Clinical data supporting a treatment option for patients with intermediate-2 or high-risk
myelofibrosis
• NCCN Clinical Practice Guidelines surrounding use of a treatment option in
myelofibrosis
• Safety, adverse event management, and dose
hunter5582
in
MPN Voice
3 years ago
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Christmas 2021 message
Podcasts
– these relaxation podcasts were produced for people with MPNs by Paul, who is a psychologist and hypnotherapist and also a MPN patient, diagnosed with
Myelofibrosis
(MF), to help them learn to be happier and healthier and more positive about living with a MPN.
Podcasts
– these relaxation podcasts were produced for people with MPNs by Paul, who is a psychologist and hypnotherapist and also a MPN patient, diagnosed with
Myelofibrosis
(MF), to help them learn to be happier and healthier and more positive about living with a MPN.
Mazcd
MPNVoice
in
MPN Voice
3 years ago
Myelofibrosis worsened so going to start ruxolitinib
I've had my second consultant appointment since being diagnosed with post ET
myelofibrosis
about 1 month ago. Then I was intermediate level 1 with platelet count 117 which gave me a median survival of 14 years.
I've had my second consultant appointment since being diagnosed with post ET
myelofibrosis
about 1 month ago. Then I was intermediate level 1 with platelet count 117 which gave me a median survival of 14 years.
Scaredy_cat
in
MPN Voice
3 years ago
No medication !
I told her about my pains, sweats , fatigue etc she said my pains might be due to arthritis and not
myelofibrosis
! I have been diagnosed with arthritis in my thumb joints but not anywhere else as only got xray on my hands even though I had told doctors about back knees and feet !
I told her about my pains, sweats , fatigue etc she said my pains might be due to arthritis and not
myelofibrosis
! I have been diagnosed with arthritis in my thumb joints but not anywhere else as only got xray on my hands even though I had told doctors about back knees and feet !
indy22
in
MPN Voice
3 years ago
Pelabresib May Represent Optimal Partner for JAK Inhibition in Myelofibrosis
The benefits yielded with the BET inhibitor pelabresib (formerly CPI-0610) in patients with
myelofibrosis
are multifold, and the agent’s potential to improve disease biology and overcome shortcomings faced with JAK inhibitors make it a strong partner for combinations and a stand-out option vs other agents
The benefits yielded with the BET inhibitor pelabresib (formerly CPI-0610) in patients with
myelofibrosis
are multifold, and the agent’s potential to improve disease biology and overcome shortcomings faced with JAK inhibitors make it a strong partner for combinations and a stand-out option vs other agents
Manouche
in
MPN Voice
3 years ago
ALTERNATIVE TO RUXONLITINIB
Good afternoon After five years of excellent treatment on Ruxonlitinib to treat
myelofibrosis
and recent surgery to remove an aggressive SCC from my forehead , I am under consideration to crossover to an alternative treatment , namely interferon.
Good afternoon After five years of excellent treatment on Ruxonlitinib to treat
myelofibrosis
and recent surgery to remove an aggressive SCC from my forehead , I am under consideration to crossover to an alternative treatment , namely interferon.
kevinbros
in
MPN Voice
3 years ago
Just joined
However, due to my recent diagnosis of
Myelofibrosis
,I will probably be looking at stepping back from front line duties. I already suffer from ET as well. Trying my best to keep my optimism levels up, in light of my latest illness. Take care
However, due to my recent diagnosis of
Myelofibrosis
,I will probably be looking at stepping back from front line duties. I already suffer from ET as well. Trying my best to keep my optimism levels up, in light of my latest illness. Take care
mystic_shrimp
in
MPN Voice
3 years ago
Saxenda weight loss medication
I have
myelofibrosis
and take hydroxycarbamide. Can anyone tell me if there are any reasons why i should not have Saxenda which is a medicine to help you loose weight. Its a GLP1 hormone ( i understand) can anyone point me in the right direction. There are no drug interactions
I have
myelofibrosis
and take hydroxycarbamide. Can anyone tell me if there are any reasons why i should not have Saxenda which is a medicine to help you loose weight. Its a GLP1 hormone ( i understand) can anyone point me in the right direction. There are no drug interactions
Ginny70
in
MPN Voice
3 years ago
Long Term INF Results
MFS is
myelofibrosis
-free survival, OS is overall survival. ----- -Low Risk- (generally under 60) --20 year MFS /OS-- INF: 84% / 100% HU: 65% / 85% PB: 55% / 80% -Hi Risk- (Generally over 60) --20 year MFS /OS-- INF: 89% / 66% HU: 41% / 40% PB: 36% / 14% ==== My take is INF is the best way
MFS is
myelofibrosis
-free survival, OS is overall survival. ----- -Low Risk- (generally under 60) --20 year MFS /OS-- INF: 84% / 100% HU: 65% / 85% PB: 55% / 80% -Hi Risk- (Generally over 60) --20 year MFS /OS-- INF: 89% / 66% HU: 41% / 40% PB: 36% / 14% ==== My take is INF is the best way
EPguy
in
MPN Voice
3 years ago
Jakavi
I started Jakavi treatment some months ago as I was progressing from PV to
myelofibrosis
. I had immediate relief from itching but it seems to have returned. Enlsrged spleen, haematocrit down, platelets low and white cells not well controlled. What now?
I started Jakavi treatment some months ago as I was progressing from PV to
myelofibrosis
. I had immediate relief from itching but it seems to have returned. Enlsrged spleen, haematocrit down, platelets low and white cells not well controlled. What now?
lucieboo
in
MPN Voice
3 years ago
Myelofibrosis and Cataract Surgery Question
I have
myelofibrosis
and just had cataract surgery. Before the surgery I had didn't always see perfectly because of the
myelofibrosis
. Does having this cancer affect the cataract surgery? Thank you.
I have
myelofibrosis
and just had cataract surgery. Before the surgery I had didn't always see perfectly because of the
myelofibrosis
. Does having this cancer affect the cataract surgery? Thank you.
CocoJ
in
MPN Voice
3 years ago
Targeted Therapies for Polycythemia Vera
Some of the reasons we see patients come off ruxolitinib for
myelofibrosis
after 3 years really do not apply to our patients with polycythemia vera.
Some of the reasons we see patients come off ruxolitinib for
myelofibrosis
after 3 years really do not apply to our patients with polycythemia vera.
Manouche
in
MPN Voice
3 years ago
Hydroxycarbamide
I have
myelofibrosis
and three different mutations with a chronic portal vein thrombosis. I’m a cervical cancer survivor as well. For the most part I’m doing much better before I started treatment. We will explore other options eventually.
I have
myelofibrosis
and three different mutations with a chronic portal vein thrombosis. I’m a cervical cancer survivor as well. For the most part I’m doing much better before I started treatment. We will explore other options eventually.
Mungestar
in
MPN Voice
3 years ago
Transplant at age 68 or not
I've had
myelofibrosis
for about 30 years and been on ruxolitinib successfully for about 8 years. We have just moved to Scotland and my new consultant has laid it on the line that rux doesn't go on working for ever and my only other option is transplant.
I've had
myelofibrosis
for about 30 years and been on ruxolitinib successfully for about 8 years. We have just moved to Scotland and my new consultant has laid it on the line that rux doesn't go on working for ever and my only other option is transplant.
Bullace
in
MPN Voice
3 years ago
High Jak2 burden with Tet2 mutation
My Doctor has down played the 88% burden, but my reading makes me think I will progress to
myelofibrosis
soon. Any opinion would be appreciated.
My Doctor has down played the 88% burden, but my reading makes me think I will progress to
myelofibrosis
soon. Any opinion would be appreciated.
Flynn2107
in
MPN Voice
3 years ago
Stepping out of antiquity: An update on emerging drugs for the treatment of polycythemia vera
Abstract Introduction: Polycythemia vera is a chronic hematologic malignancy frequently presenting with constitutional symptoms and associated with an increased risk of thrombosis, hemorrhage, and progression to
myelofibrosis
or acute myeloid leukemia.
Abstract Introduction: Polycythemia vera is a chronic hematologic malignancy frequently presenting with constitutional symptoms and associated with an increased risk of thrombosis, hemorrhage, and progression to
myelofibrosis
or acute myeloid leukemia.
Manouche
in
MPN Voice
3 years ago
Appt with Prof Harrison - getting nervous
I still get very anxious about having
Myelofibrosis
and I'm just feeling unsettled about talking about it to someone other than my own haematologist (even though I know Prof Harrison is the best!).
I still get very anxious about having
Myelofibrosis
and I'm just feeling unsettled about talking about it to someone other than my own haematologist (even though I know Prof Harrison is the best!).
Otterfield
in
MPN Voice
3 years ago
UPDATE: WARWICK's ASCT Journey...
Myelofibrosis
patients have one of the slowest recoveries from stem cell transplants as the new marrow has to grow through the scar tissue in the marrow space and some of the Luekeamia patients who had their transplants at the same time as me are recovering very well which is really encouraging.
Myelofibrosis
patients have one of the slowest recoveries from stem cell transplants as the new marrow has to grow through the scar tissue in the marrow space and some of the Luekeamia patients who had their transplants at the same time as me are recovering very well which is really encouraging.
socrates_8
in
MPN Voice
3 years ago
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