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Experiences with
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MF review article : Treatment options 2019
Myelofibrosis
in 2019: moving beyond JAK2 inhibition” Schieber et al. Blood Cancer Journal (2019)9:74 all the best Rachel
Myelofibrosis
in 2019: moving beyond JAK2 inhibition” Schieber et al. Blood Cancer Journal (2019)9:74 all the best Rachel
Rachelthepotter
in
MPN Voice
5 years ago
Extensive body heat.
Anyone with
Myelofibrosis
on Jakafi experiencing occasional internal body heat like if you are burning inside?
Anyone with
Myelofibrosis
on Jakafi experiencing occasional internal body heat like if you are burning inside?
Boriqua
in
MPN Voice
5 years ago
Living With MPNs Day - London
The
Myelofibrosis
presentation was the best I have seen. I managed to meet 11 of the 14 I had id-ed beforehand, plus three others unexpectedly, from healthunlocked.
The
Myelofibrosis
presentation was the best I have seen. I managed to meet 11 of the 14 I had id-ed beforehand, plus three others unexpectedly, from healthunlocked.
MFBMT2011
in
MPN Voice
5 years ago
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Jakifi dosage
Recent
Myelofibrosis
diagnosis. Anybody tell me about experience with increasing dosage? Side effects? Benefits? I’m 73 yr old male. Would love to talk to other
myelofibrosis
patients.
Recent
Myelofibrosis
diagnosis. Anybody tell me about experience with increasing dosage? Side effects? Benefits? I’m 73 yr old male. Would love to talk to other
myelofibrosis
patients.
Jerrymohler
in
MPN Voice
5 years ago
No fear and so grateful for Mutation diagnoses
I now have
Myelofibrosis
and to be honest am over the moon!! Instead of it being a negative it’s like I have a life worth living again. Some discomfort but nothing much. I was also told at Guys hospital London going by my test results I should expect to be alive and kicking in fifteen years.
I now have
Myelofibrosis
and to be honest am over the moon!! Instead of it being a negative it’s like I have a life worth living again. Some discomfort but nothing much. I was also told at Guys hospital London going by my test results I should expect to be alive and kicking in fifteen years.
StreetPastor
in
MPN Voice
5 years ago
MF transplant - successful stem cell boost
Hi All, Last year I wrote a few posts about my first transplant (MUD) to treat
myelofibrosis
. It failed to engraft so we tried a second transplant (HAPLO). It too was initially deemed to have failed. On day 130 we attempted a stem cell boost.
Hi All, Last year I wrote a few posts about my first transplant (MUD) to treat
myelofibrosis
. It failed to engraft so we tried a second transplant (HAPLO). It too was initially deemed to have failed. On day 130 we attempted a stem cell boost.
Simon96
in
MPN Voice
5 years ago
Anyone on Navitoclax ABT-263 study medication with Jakafi?
Anyone with
myelofibrosis
on the Navitoclax ABT-263 study medication with Jakafi that would like to share information. I have been on both medications since February with some luck. Have been stabilized after failing with Jakafi but that about it for now.
Anyone with
myelofibrosis
on the Navitoclax ABT-263 study medication with Jakafi that would like to share information. I have been on both medications since February with some luck. Have been stabilized after failing with Jakafi but that about it for now.
Boriqua
in
MPN Voice
5 years ago
Polycythemia Vera with myelofibrosis
High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?
High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?
IK5555
in
MPN Voice
5 years ago
Hens teeth, aggressive sarcomatoid sccs and ruxolitinib
My
myelofibrosis
is still Inter 2, and my new haematologist ( in the same hospital ) is going to arrange another BMB and genomic analysis. But it won't happen till the new year, and these new sccs grow horrifyingly fast. May have metastasised elsewhere in body.
My
myelofibrosis
is still Inter 2, and my new haematologist ( in the same hospital ) is going to arrange another BMB and genomic analysis. But it won't happen till the new year, and these new sccs grow horrifyingly fast. May have metastasised elsewhere in body.
Rachelthepotter
in
MPN Voice
5 years ago
New meds for Myelofibrosis
My new specialist told me that it’s just released from the FDA here in the US and it’s especially for
Myelofibrosis
. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/day And it seems to be working with increased energy and less brain fog.
My new specialist told me that it’s just released from the FDA here in the US and it’s especially for
Myelofibrosis
. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/day And it seems to be working with increased energy and less brain fog.
Cja1956
in
MPN Voice
5 years ago
Vitamin D, good or bad?
https://b-s-h.org.uk/about-us/news/vitamin-d-and-immune-cells-stimulate-
myelofibrosis
-in-mpn/ Hi all, Just wondering if anybody has any thoughts on this article. Joe
https://b-s-h.org.uk/about-us/news/vitamin-d-and-immune-cells-stimulate-
myelofibrosis
-in-mpn/ Hi all, Just wondering if anybody has any thoughts on this article. Joe
cabinetmaker
in
MPN Voice
5 years ago
PV
As a result of this I had a bone marrow biopsy which showed
myelofibrosis
. I have been taking Ruxolitinib for 4 weeks. I wondered how other patients are coping with this medication,
As a result of this I had a bone marrow biopsy which showed
myelofibrosis
. I have been taking Ruxolitinib for 4 weeks. I wondered how other patients are coping with this medication,
MamPRV
in
MPN Voice
5 years ago
Should I change to Busulfan?
I have been on hydroxy for just over five years now for pre-fibrotic
myelofibrosis
. When I saw my haematologist a couple of weeks ago she asked if I would like to switch to busulfan to see if I have fewer side effects. Is anyone else on this medication?
I have been on hydroxy for just over five years now for pre-fibrotic
myelofibrosis
. When I saw my haematologist a couple of weeks ago she asked if I would like to switch to busulfan to see if I have fewer side effects. Is anyone else on this medication?
Cindy12
in
MPN Voice
5 years ago
Jakavi a Janus kinase inhibitor ; does anyone know about this Med for the treatment of CLL
It’s approved for
myelofibrosis
, but now being used for CLL.
It’s approved for
myelofibrosis
, but now being used for CLL.
LovecuresCLL
in
CLL Support
5 years ago
Was my Jakafi dosage lowered inappropriatelyand need to be raised?
I have stage 3
myelofibrosis
, I was on 20mg of Ruxolitinib signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my ruxolitinib to 10 mg cause my platelets went down.
I have stage 3
myelofibrosis
, I was on 20mg of Ruxolitinib signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my ruxolitinib to 10 mg cause my platelets went down.
Boriqua
in
MPN Voice
5 years ago
Stem cell transplant for Myelofibrosis
After 12 years with PV and then 2 years with MF I explained in a letter to my consultant that were the decision to have a transplant entirely mine it is what I would wish for. I'd been on Jakavi for a year and it had ceased to help. I then went onto the Pacritinib trial which curtailed night sweats
After 12 years with PV and then 2 years with MF I explained in a letter to my consultant that were the decision to have a transplant entirely mine it is what I would wish for. I'd been on Jakavi for a year and it had ceased to help. I then went onto the Pacritinib trial which curtailed night sweats
Dodders
in
MPN Voice
5 years ago
Help with anemia
I have
Myelofibrosis
with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?
I have
Myelofibrosis
with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?
Jerrymohler
in
MPN Voice
5 years ago
Maybe myelofibrosis
After giving my history and my records to the new doctor, she said I most likely have progressed to
Myelofibrosis
. She prescribed extensive lab work and another bmb. I’m trying very hard to be strong and not fall apart. I’m only 63 and her prognosis was not very promising.
After giving my history and my records to the new doctor, she said I most likely have progressed to
Myelofibrosis
. She prescribed extensive lab work and another bmb. I’m trying very hard to be strong and not fall apart. I’m only 63 and her prognosis was not very promising.
Cja1956
in
MPN Voice
5 years ago
Low Dose Thalidomide
My haemo has floated the idea of low dose thalidomide in combination with prednisone as a potential treatment for my advanced
myelofibrosis
. I have read a couple of articles on the net which suggest quite a good response in reducing anemia and increasing platelets.
My haemo has floated the idea of low dose thalidomide in combination with prednisone as a potential treatment for my advanced
myelofibrosis
. I have read a couple of articles on the net which suggest quite a good response in reducing anemia and increasing platelets.
47Robert
in
MPN Voice
5 years ago
Petachie
My partner, (having a difficult time since diagnosis this year) has. post ET
myelofibrosis
.
My partner, (having a difficult time since diagnosis this year) has. post ET
myelofibrosis
.
Goldfish212
in
MPN Voice
5 years ago
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