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Myelofibrosis
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Ruxolitinib not working so well
I was diagnosed with
Myelofibrosis
Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!!
I was diagnosed with
Myelofibrosis
Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!!
Searcher56
in
MPN Voice
8 months ago
Moving toward disease modification in polycythemia vera
Nonetheless, longer follow-up is needed to assess whether molecular responses associate with clinically meaningful outcome measures such as thrombosis and progression to
myelofibrosis
or AML » https://www.sciencedirect.com/science/article/abs/pii/S0006497123022978
Nonetheless, longer follow-up is needed to assess whether molecular responses associate with clinically meaningful outcome measures such as thrombosis and progression to
myelofibrosis
or AML » https://www.sciencedirect.com/science/article/abs/pii/S0006497123022978
Manouche
in
MPN Voice
7 months ago
Fedratinib - NICE Appraisal
MPN Voice are putting together a Patient Group Submission for a forthcoming appraisal by NICE, of Fedratinib for the treatment of
myelofibrosis
patients with an enlarged spleen or other symptoms.
MPN Voice are putting together a Patient Group Submission for a forthcoming appraisal by NICE, of Fedratinib for the treatment of
myelofibrosis
patients with an enlarged spleen or other symptoms.
AndyT
in
MPN Voice
5 months ago
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Ruxolitinib & raised cholesterol
I have been on Ruxolitinib for nearly 9 years now managing my primary
myelofibrosis
. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor.
I have been on Ruxolitinib for nearly 9 years now managing my primary
myelofibrosis
. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor.
Cazbolac
in
MPN Voice
8 months ago
Post PV Myelofibrosis - One Year Update
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
marlenablue
in
MPN Voice
7 months ago
Night Sweats
I have post ET
Myelofibrosis
, low risk and on no medication as yet, have just started having night sweats and am wondering if this is a problem others have had?
I have post ET
Myelofibrosis
, low risk and on no medication as yet, have just started having night sweats and am wondering if this is a problem others have had?
flog
in
MPN Voice
11 months ago
Just wanted to share my Primary Myelofibrosis journey so far…….
Hi all, My diagnosis is Primary
Myelofibrosis
+Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation.
Hi all, My diagnosis is Primary
Myelofibrosis
+Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation.
LFCLove
in
MPN Voice
4 months ago
Advice please from those post SCT about dentistry
I'm now 2.5 years post transplant for
myelofibrosis
. My treatment was very intense which had left me with alot of long term issues.
I'm now 2.5 years post transplant for
myelofibrosis
. My treatment was very intense which had left me with alot of long term issues.
Marchhare7
in
MPN Voice
22 days ago
Changing from hydroxy to Analgride
I have
myelofibrosis
. Thank you! X
I have
myelofibrosis
. Thank you! X
Didgeridoo2
in
MPN Voice
10 months ago
Newly diagnosed Myelofibrosis Stage 2
In May this year I had a bone marrow biopsy and it was discovered my ET has progressed to Stage 2
Myelofibrosis
. I was put on Ruxolitinib which works well for me and is definitely a much better drug than Hydroxycarbamide.
In May this year I had a bone marrow biopsy and it was discovered my ET has progressed to Stage 2
Myelofibrosis
. I was put on Ruxolitinib which works well for me and is definitely a much better drug than Hydroxycarbamide.
Searcher56
in
MPN Voice
9 months ago
skin cancer and Ruxo
I have
myelofibrosis
, and I’ve been on Ruxo since June and prior to that I was on hydroxy for four years. He told me with all my symptoms that I might have skin cancer on my eyelid and now I have to have a biopsy to determine if that’s true.
I have
myelofibrosis
, and I’ve been on Ruxo since June and prior to that I was on hydroxy for four years. He told me with all my symptoms that I might have skin cancer on my eyelid and now I have to have a biopsy to determine if that’s true.
Cja1956
in
MPN Voice
6 months ago
Imetelstat Users?
Hi All, I have
Myelofibrosis
and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced.
Hi All, I have
Myelofibrosis
and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced.
TimGS
in
MPN Voice
6 months ago
living with MPNs day in London
I will be heading for the
Myelofibrosis
group but am happy to chat to anyone. 😀 I organised a wear/carry something red several years ago so people could meet and carried a red folder under my arm. . However, without thinking, I put on a red and white polo shirt.
I will be heading for the
Myelofibrosis
group but am happy to chat to anyone. 😀 I organised a wear/carry something red several years ago so people could meet and carried a red folder under my arm. . However, without thinking, I put on a red and white polo shirt.
MFBMT2011
in
MPN Voice
8 months ago
New member - Post ET MF (Australia)
In early 2022, after an increase in my platelets and symptoms (extreme fatigue, 15kg lean body weight loss, night sweats, bone pain, and abdominal pain), a repeat marrow test on August 18, 2022, identified Post ET
myelofibrosis
. Genetics were CAL-R type 2 with ASXL1.
In early 2022, after an increase in my platelets and symptoms (extreme fatigue, 15kg lean body weight loss, night sweats, bone pain, and abdominal pain), a repeat marrow test on August 18, 2022, identified Post ET
myelofibrosis
. Genetics were CAL-R type 2 with ASXL1.
Hatchie
in
MPN Voice
2 months ago
NEWBIE
I have chronic myeloproliferative disease - between ET & prefibrotic
myelofibrosis
, on HU 500mg per day and 1000mg on Sundays, plus 75mg Aspirin. This is of course on top of all my usual pain medication.
I have chronic myeloproliferative disease - between ET & prefibrotic
myelofibrosis
, on HU 500mg per day and 1000mg on Sundays, plus 75mg Aspirin. This is of course on top of all my usual pain medication.
JOL13
in
MPN Voice
9 months ago
Pain in hip, leg down to shins, ET Jak2 prefibrotic MF
Diagnosed earlier this year with ET Jak2 and Prefibrotic
myelofibrosis
. Have been in pain since 1st Nov - checked for DVT -nothing - Having MRI of hip on Friday.
Diagnosed earlier this year with ET Jak2 and Prefibrotic
myelofibrosis
. Have been in pain since 1st Nov - checked for DVT -nothing - Having MRI of hip on Friday.
JOL13
in
MPN Voice
6 months ago
tasquinimod in myelofibrosis (MF)
That suggests that tasquinimod can act as a disease modifying agent in MF » « The now planned study will investigate tasquinimod given as monotherapy to patients with
myelofibrosis
who have previously been treated with a JAK inhibitor or who are ineligible for JAK inhibitor treatment.
That suggests that tasquinimod can act as a disease modifying agent in MF » « The now planned study will investigate tasquinimod given as monotherapy to patients with
myelofibrosis
who have previously been treated with a JAK inhibitor or who are ineligible for JAK inhibitor treatment.
Manouche
in
MPN Voice
11 months ago
PV treatment follow-Up
Results were that I had PV and no early
Myelofibrosis
. They repeated my genetic blood work. The results were the following. My VAF went down to 3.8% and I tested positive for CALR with VAF of 5.3%. I am considering going on a low dose of Besremi and staying there to limit any side effects.
Results were that I had PV and no early
Myelofibrosis
. They repeated my genetic blood work. The results were the following. My VAF went down to 3.8% and I tested positive for CALR with VAF of 5.3%. I am considering going on a low dose of Besremi and staying there to limit any side effects.
FlTodd
in
MPN Voice
7 months ago
sjogens?
I have post PV
Myelofibrosis
. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly.
I have post PV
Myelofibrosis
. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly.
Yanico
in
MPN Voice
7 months ago
myelofibrosis and interferon
I progressed to
Myelofibrosis
in March 2021. I was put onto Interferon Pegasys June 2022 to slow down platelets which reached a high of 776. White blood count had reached 22.
I progressed to
Myelofibrosis
in March 2021. I was put onto Interferon Pegasys June 2022 to slow down platelets which reached a high of 776. White blood count had reached 22.
Pragmaticone
in
MPN Voice
1 year ago
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