Search
Search
About
Log in
Join
Experiences with
Myelofibrosis
Posts
Communities
464 public posts
Filter results
jakafi and Pegasys combination for Myelofibrosis
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Yanico
in
MPN Voice
10 months ago
The Next Frontier in Myelofibrosis Management- Eric Tam 3-8-23
This is from a continuing medical education activity that I completed today: I hope you find some useful, or at least hope-inspiring information in here... https://www.scientiacme.org/pdfs/PDF48001.pdf
This is from a continuing medical education activity that I completed today: I hope you find some useful, or at least hope-inspiring information in here... https://www.scientiacme.org/pdfs/PDF48001.pdf
PhysAssist
in
MPN Voice
7 months 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.
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.
PhysAssist
in
MPN Voice
1 year ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Myelofibrosis and bone pain
how do people manage bone pain with
Myelofibrosis
. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is impacting on my ability to sleep. I bought CBD oil but it is not really helping and paracetamol doesn’t work at all.
how do people manage bone pain with
Myelofibrosis
. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is impacting on my ability to sleep. I bought CBD oil but it is not really helping and paracetamol doesn’t work at all.
kiwitraveller
in
MPN Voice
1 year ago
Synthetic Hormones, Chemo & Radiotherapy
., have had Primary
Myelofibrosis
for 20 years, treated with Aspirin & HU until recently, now switched to Anagrelide. I have recently been diagnosed with breast cancer, due to have lumpectomy next month, then there will be decisions to make about further treatments.
., have had Primary
Myelofibrosis
for 20 years, treated with Aspirin & HU until recently, now switched to Anagrelide. I have recently been diagnosed with breast cancer, due to have lumpectomy next month, then there will be decisions to make about further treatments.
CraftySpider
in
MPN Voice
10 months ago
Autoimmune myelofibrosis
Hi has anyone successfully got a diagnosis of autoimmune
myelofibrosis
? It appears that it is commonly missed and primary mf is diagnosed instead. Outcomes are much better though and treatment is different. It typically affects females under 40.
Hi has anyone successfully got a diagnosis of autoimmune
myelofibrosis
? It appears that it is commonly missed and primary mf is diagnosed instead. Outcomes are much better though and treatment is different. It typically affects females under 40.
Bakerloo73
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
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 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!
Scaredy_cat
in
MPN Voice
1 year ago
Why would a nephrologist say this
My wife has
Myelofibrosis
, and is very happy with her weight. Also she was told that the hospital would not be concerned until her egfr was down to 6%. Any thoughts on the consultants words?
My wife has
Myelofibrosis
, and is very happy with her weight. Also she was told that the hospital would not be concerned until her egfr was down to 6%. Any thoughts on the consultants words?
jointpain
in
Kidney Disease
1 year ago
Myelofibrosis
I see alot of posts regarding PV and ET.Can anyone share some feedback on mylepfibrosis? At first, I was diagnosis with ET, but after a second BMB my physician is leaning toward PMF. I will be starting on Jakfie next week. I've been taking anagrelide for about 2 years. At this point, I'm feeling
I see alot of posts regarding PV and ET.Can anyone share some feedback on mylepfibrosis? At first, I was diagnosis with ET, but after a second BMB my physician is leaning toward PMF. I will be starting on Jakfie next week. I've been taking anagrelide for about 2 years. At this point, I'm feeling
Hidden
in
MPN Voice
1 year ago
HU and prefibrotic myelofibrosis
After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic
myelofibrosis
. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted He finally agreed to 3x a week.
After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic
myelofibrosis
. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted He finally agreed to 3x a week.
Apple238
in
CLL Support
1 year ago
Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT
Source: https://www.hematologyadvisor.com/home/topics/general-hematology/
myelofibrosis
-tp53-mutations-confer-high-risk-hsct-treatment-risk/
Research article:
Impact of TP53 on outcome of patients with
undergoing hematopoietic stem cell transplantation Full-text Source:
Source: https://www.hematologyadvisor.com/home/topics/general-hematology/
myelofibrosis
-tp53-mutations-confer-high-risk-hsct-treatment-risk/
Research article:
Impact of TP53 on outcome of patients with
undergoing hematopoietic stem cell transplantation Full-text Source:
PhysAssist
in
MPN Voice
1 year ago
Antimalaria Medication and Jakavi
Hello dear all, Things are going well with my husband who has
myelofibrosis
. Jakavi has been a live changer and he responds very well to it. We are ready to go on an adventure!!!. We are leaving for Kenya in a few weeks to visit friends and of course visit Masai Mara and Ol Pejeta.
Hello dear all, Things are going well with my husband who has
myelofibrosis
. Jakavi has been a live changer and he responds very well to it. We are ready to go on an adventure!!!. We are leaving for Kenya in a few weeks to visit friends and of course visit Masai Mara and Ol Pejeta.
Ticotopia
in
MPN Voice
11 months ago
BMB- Bone Scarring
Although she said they can’t classify this a
myelofibrosis
as low , it’s evidently clear there’s been disease progression and I can’t stop worrying. I have had symptoms for over 4 years but recently diagnosed. Anyone else going through the same ?😭
Although she said they can’t classify this a
myelofibrosis
as low , it’s evidently clear there’s been disease progression and I can’t stop worrying. I have had symptoms for over 4 years but recently diagnosed. Anyone else going through the same ?😭
Afya23
in
MPN Voice
1 year ago
Pelabresib With Ruxolitinib Shows Improvements in Patients With JAK Inhibitor-Naïve Myelofibrosis
Ruxolitinib is a JAKi used as a standard therapy for
myelofibrosis
. A cohort of the open-label, global, phase 2 MANIFEST study (ClinicalTrials.gov Identifier: NCT02158858) included patients with
myelofibrosis
naïve to JAKi therapy.
Ruxolitinib is a JAKi used as a standard therapy for
myelofibrosis
. A cohort of the open-label, global, phase 2 MANIFEST study (ClinicalTrials.gov Identifier: NCT02158858) included patients with
myelofibrosis
naïve to JAKi therapy.
PhysAssist
in
MPN Voice
1 year ago
Prefibrotic Myelofibrosis and I hate Hydroxyurea (HU)
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 He finally agreed to 3x a week.
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 He finally agreed to 3x a week.
Apple238
in
Leukaemia Support
1 year ago
Prefibrotic myelofibrosis and I hate hydroxyurea (HU)
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 He finally agreed to 3x a week.
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 He finally agreed to 3x a week.
Apple238
in
MPN Voice
1 year ago
myelofibrosis
hello anyone with mf,I'm not sure if I should start treatment a lot of people on here are on treatment. my platelets are normal, hb slightly low ,slightly enlarged spleen ,fatigue is main symptom. I'm on watch and wait but should I be on something to stop the mf progressing.
hello anyone with mf,I'm not sure if I should start treatment a lot of people on here are on treatment. my platelets are normal, hb slightly low ,slightly enlarged spleen ,fatigue is main symptom. I'm on watch and wait but should I be on something to stop the mf progressing.
glyndale
in
MPN Voice
1 year ago
A real-world study of predictors of response to hydroxyurea and switch to ruxolitinib in patients with polycythemia vera
Clinical outcomes based on response to HU
Among the 449 patients receiving only HU, 51 thrombotic events, 25 hemorrhagic events, and 43 infections were recorded. 52 patients developed a secondary primary malignancy, 14 patients progressed to post-PV
myelofibrosis
, 10 progressed to blast phase
Clinical outcomes based on response to HU
Among the 449 patients receiving only HU, 51 thrombotic events, 25 hemorrhagic events, and 43 infections were recorded. 52 patients developed a secondary primary malignancy, 14 patients progressed to post-PV
myelofibrosis
, 10 progressed to blast phase
hunter5582
in
MPN Voice
10 months ago
Pelabresib in Combination With Ruxolitinib for Myelofibrosis
This combination has the potential to improve the standard of care for treatment-naïve patients with
myelofibrosis
and warrants further investigation.
This combination has the potential to improve the standard of care for treatment-naïve patients with
myelofibrosis
and warrants further investigation.
Manouche
in
MPN Voice
1 year ago
1
...
3
4
5
...
24
Next page
10
20
Filter results
Clear filters
Posted in
All communities
MPN Voice
436 results
CLL Support
10 results
Fight MPN
7 results
View top 10 communities
Sort by
Most Relevant
Newest