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A bit of advice please.
Hello Everyone I have ET JAK2 and currently taking Hydroxycarbamide. I have be reading about ruxolitinib and wondered if anyone out there takes this medication to treat ET JAK2 ? I have read that this is to treat PV whilst also read about it being used for ET JAK2 so I’m a bit confused 🫤 Yvonne
Hello Everyone I have ET JAK2 and currently taking Hydroxycarbamide. I have be reading about ruxolitinib and wondered if anyone out there takes this medication to treat ET JAK2 ? I have read that this is to treat PV whilst also read about it being used for ET JAK2 so I’m a bit confused 🫤 Yvonne
YBSx
in
MPN Voice
10 hours ago
Choices.
My name is Tania - I was diagnosed with myelofibrosis 8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here. I have been offered places on trials which are taking
My name is Tania - I was diagnosed with myelofibrosis 8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here. I have been offered places on trials which are taking
Petsgalore
in
MPN Voice
1 day ago
Ruxolitinib - declining efficacy?
Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the past 7 years with great success. My platelets dropped to around 450 and my haematocrit has been stable, with no side effects. My general health and fatigue levels have improved markedly. However over the past 18 months my
Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the past 7 years with great success. My platelets dropped to around 450 and my haematocrit has been stable, with no side effects. My general health and fatigue levels have improved markedly. However over the past 18 months my
Rob58
in
MPN Voice
4 days ago
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Jak2 question and PV question (have medical anxiety so nervous)
Hey everyone sorry for such a long message. I'm a 28M and have had consistent high RBC, HGB, HCT counts for about 8 years now. The numbers though are ever so slightly elevated and range from (5.9-6.1 RBC), (16.7-17.2HGB),and(49-50.4 HCT) during those 8 years they each either went up or down and did NOT
Hey everyone sorry for such a long message. I'm a 28M and have had consistent high RBC, HGB, HCT counts for about 8 years now. The numbers though are ever so slightly elevated and range from (5.9-6.1 RBC), (16.7-17.2HGB),and(49-50.4 HCT) during those 8 years they each either went up or down and did NOT
HockeyFan47
in
MPN Voice
8 days ago
Myelofibrosis - pain in quad muscles
Hi All, I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2 myelofibrosis are experiencing pain in their quads (thigh muscles) when walking or running. My specialists are baffled by this, and I can find no mention
Hi All, I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2 myelofibrosis are experiencing pain in their quads (thigh muscles) when walking or running. My specialists are baffled by this, and I can find no mention
TimGS
in
MPN Voice
11 days ago
Bone loss, due to any CLL treatments?
This is not strictly related to CLL. My sister has had chemotherapy for breast cancer, which caused bone loss/reduction of bone density, especially in the jaw area. Are there any CLL treatments that cause bone loss?
This is not strictly related to CLL. My sister has had chemotherapy for breast cancer, which caused bone loss/reduction of bone density, especially in the jaw area. Are there any CLL treatments that cause bone loss?
MistyMountainHop
in
CLL Support
17 days ago
Muddled
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Anouchka
in
MPN Voice
21 days ago
New to Rux
Hi everyone. Thank you all for all the useful replies I got to my last question. Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day. Someone
Hi everyone. Thank you all for all the useful replies I got to my last question. Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day. Someone
Sivasi
in
MPN Voice
22 days ago
Shingles and Ruxolitinib
I note that on the Blood Cancer web site is states that [i]Aciclovir is an anti-viral medication that prevents shingles, which can be a side effect of Ruxolitinib.[/i] [i]If you’re on Ruxolitinib, you have to be careful about your skin,[/i] I was told to be aware and careful of my skin when taking
I note that on the Blood Cancer web site is states that [i]Aciclovir is an anti-viral medication that prevents shingles, which can be a side effect of Ruxolitinib.[/i] [i]If you’re on Ruxolitinib, you have to be careful about your skin,[/i] I was told to be aware and careful of my skin when taking
nanmc
in
MPN Voice
24 days ago
sct update so far
I just wanted let you all know how iam getting on I have been in since the 29 and have been having chemo daily I have had no side effects so far my doctor said I can take chemotherapy like water but don’t get to ahead of myself as this is the easy bit which I knew from countless hours of research but
I just wanted let you all know how iam getting on I have been in since the 29 and have been having chemo daily I have had no side effects so far my doctor said I can take chemotherapy like water but don’t get to ahead of myself as this is the easy bit which I knew from countless hours of research but
Leighcox85
in
MPN Voice
25 days ago
Rusfertide (for HCT Control)- FDA status
I came across this info today. Mar 28 2024: "Protagonist Therapeutics said it plans to seek FDA approval for rusfertide for treating polycythemia vera in late 2025" https://www.cancer.gov/news-events/cancer-currents-blog/2024/rusfertide-polycythemia-vera-fewer-phlebotomies and an explanation why it
I came across this info today. Mar 28 2024: "Protagonist Therapeutics said it plans to seek FDA approval for rusfertide for treating polycythemia vera in late 2025" https://www.cancer.gov/news-events/cancer-currents-blog/2024/rusfertide-polycythemia-vera-fewer-phlebotomies and an explanation why it
EPguy
in
MPN Voice
27 days ago
Switch from Besremi to Jakafi
I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby aspirin only. 5 yrs of monthly phlebotomy took its toll and iron deficiency and high platelets led me to besremi which had just been approved
I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby aspirin only. 5 yrs of monthly phlebotomy took its toll and iron deficiency and high platelets led me to besremi which had just been approved
mfh7
in
MPN Voice
27 days ago
Different mutation?
I was just checking via my NHS app what had been sent to my GP, when I noticed on a letter from Guys this - it listed my mutations - CGN - normal karotype, NGS - CALR, L2AF1, ASXL2. (High risk markers) Previously I thought I was ASXL1, it could be a typo I suppose but does anyone know the difference
I was just checking via my NHS app what had been sent to my GP, when I noticed on a letter from Guys this - it listed my mutations - CGN - normal karotype, NGS - CALR, L2AF1, ASXL2. (High risk markers) Previously I thought I was ASXL1, it could be a typo I suppose but does anyone know the difference
lizzziep
in
MPN Voice
1 month ago
Effective Management of Polycythemia Vera With Ropeginterferon Alfa-2b Treatment
Discussion; The results in our study demonstrate that the new dosing regimen of 250-350-500 µg of ropeginterferon alfa-2b is well-tolerated and highly efficacious in patients suffering from PV. This dosing regimen was associated with a rapid achievement of CHR without the need for phlebotomy or erythrocyte
Discussion; The results in our study demonstrate that the new dosing regimen of 250-350-500 µg of ropeginterferon alfa-2b is well-tolerated and highly efficacious in patients suffering from PV. This dosing regimen was associated with a rapid achievement of CHR without the need for phlebotomy or erythrocyte
Manouche
in
MPN Voice
1 month ago
Jakavi advice please
Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving
Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving
Sivasi
in
MPN Voice
1 month ago
CLL and MDS
My husband has had CLL FOR 11 Years. He was recently diagnosed with MDS Leukemia also. Have any of you taken Rebuzil shots to promote growth of red blood cells in the bone marrow? it was approved by FDA in August of ‘23… What side effects, if any , did you have? How long did it take to work for you
My husband has had CLL FOR 11 Years. He was recently diagnosed with MDS Leukemia also. Have any of you taken Rebuzil shots to promote growth of red blood cells in the bone marrow? it was approved by FDA in August of ‘23… What side effects, if any , did you have? How long did it take to work for you
Farrpottery
in
CLL Support
1 month ago
Palbociclib for MF reducing fibrosis and more
I found this subject inspired by a dead post in the Sjogren's forum. "The drug, palbociclib, may be able to prevent the scarring of bone marrow that existing treatments (Rux etc) for myelofibrosis cannot." https://medicalxpress.com/news/2021-08-discovery-potential-treatment-deadly-blood.html and active
I found this subject inspired by a dead post in the Sjogren's forum. "The drug, palbociclib, may be able to prevent the scarring of bone marrow that existing treatments (Rux etc) for myelofibrosis cannot." https://medicalxpress.com/news/2021-08-discovery-potential-treatment-deadly-blood.html and active
EPguy
in
MPN Voice
1 month ago
US Senator Joe Lieberman died from MF
Just read this in Wall St Journal. Reproduced below from: https://www.yale64.org/remembrances/lieberman.htm since the WSJ version is in a paywall. -- His son calls the prior condition old fashioned MPD. I assume it was PV, suggests his Dr may have been likewise old fashioned and maybe he didn't
Just read this in Wall St Journal. Reproduced below from: https://www.yale64.org/remembrances/lieberman.htm since the WSJ version is in a paywall. -- His son calls the prior condition old fashioned MPD. I assume it was PV, suggests his Dr may have been likewise old fashioned and maybe he didn't
EPguy
in
MPN Voice
1 month ago
My dad has CLL with TP53 mutation
As i am writing this im very frightened And i need someone with similar condition My dad was diagnosed back in 2019 With CLL he did about 3 sessions of chemotherapy and went back to remission Lately in January he noticed some lymph nodes in his neck as well as in his face After examination
As i am writing this im very frightened And i need someone with similar condition My dad was diagnosed back in 2019 With CLL he did about 3 sessions of chemotherapy and went back to remission Lately in January he noticed some lymph nodes in his neck as well as in his face After examination
Ornate2001
in
Leukaemia CARE
2 months ago
Ivermectin may help with cancer treatments
Studies of various chronic myeloid leukemia cell lines show that ivermectin kills these lines by inducing mitochondrial dysfunction and the production of free radicals. In mice with leukemia, ivermectin increases the influx of chloride ions in the cells, promoting cell death. When ivermectin is combined
Studies of various chronic myeloid leukemia cell lines show that ivermectin kills these lines by inducing mitochondrial dysfunction and the production of free radicals. In mice with leukemia, ivermectin increases the influx of chloride ions in the cells, promoting cell death. When ivermectin is combined
craterlake
in
CLL Support
2 months ago
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