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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
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
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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
Bone pain in myelofibrosis
Hello, all! I had to write to you because I’m desperate for answers. I was in the emergency room last Wednesday for what I thought was just a kidney infection. The pain in my lower back was unbearable and I couldn’t even stand or walk. They did all kinds of tests and confirmed my suspicions and sent
Hello, all! I had to write to you because I’m desperate for answers. I was in the emergency room last Wednesday for what I thought was just a kidney infection. The pain in my lower back was unbearable and I couldn’t even stand or walk. They did all kinds of tests and confirmed my suspicions and sent
Cja1956
in
MPN Voice
3 years ago
Do sudden blasts necessarily mean progression?
Husband was diagnosed with prefibrotic
myelofibrosis
a year ago. Rubuxiltnib really helped calm his numbers and shrink his spleen down. A week ago blasts showed in his bloodwork results and his platelets decreased. He had another bone marrow biopsy and we are waiting for the results.
Husband was diagnosed with prefibrotic
myelofibrosis
a year ago. Rubuxiltnib really helped calm his numbers and shrink his spleen down. A week ago blasts showed in his bloodwork results and his platelets decreased. He had another bone marrow biopsy and we are waiting for the results.
TM76
in
MPN Voice
3 years ago
Has the vaccine worked?
I have been shielding as I have
Myelofibrosis
and am 82 - what now? SkipperL
I have been shielding as I have
Myelofibrosis
and am 82 - what now? SkipperL
skipperL
in
MPN Voice
3 years ago
Vitamin D insufficiency
I would like to increase this to 1500 IU per day but I am concerned about a study that reported that vitamin D is involved in the progression to
myelofibrosis
. I welcome any advice.
I would like to increase this to 1500 IU per day but I am concerned about a study that reported that vitamin D is involved in the progression to
myelofibrosis
. I welcome any advice.
Dan73
in
MPN Voice
3 years ago
I have myelofibrosis and am on 20mgs if Ruxolitinib twice daily. However, my spleen has grown to enormous proportions and the Ruxolitini
My Haematologist is putting me on Cytidine. What is the frequency of taking this?
My Haematologist is putting me on Cytidine. What is the frequency of taking this?
billybrock
in
MPN Voice
3 years ago
Interferon-alpha for treating polycythemia vera yields improved myelofibrosis-free and overall survival
In conclusion, this study supports treatment of PV with rIFNα to prevent
myelofibrosis
and potentially prolong survival. https://pubmed.ncbi.nlm.nih.gov/33654206/?
In conclusion, this study supports treatment of PV with rIFNα to prevent
myelofibrosis
and potentially prolong survival. https://pubmed.ncbi.nlm.nih.gov/33654206/?
Manouche
in
MPN Voice
3 years ago
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