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Mast cell leukaemia
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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
2 hours 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
15 hours 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
3 days ago
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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
3 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
5 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
6 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
10 days 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
15 days 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
18 days 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
20 days 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
22 days 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
23 days 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
27 days 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
28 days ago
2nd generation Jak-i's, what's up?
I posted last year on a 2nd gen Jak inhibitor. This is different from the various recently approved ones for MF (Vonjo etc) that are more related to Gen 1 Jak-i's. The concept is Gen 2 catches Jak2 while it's sleeping while Gen 1s are limited to acting on the awake (active) config of Jak2. This was
I posted last year on a 2nd gen Jak inhibitor. This is different from the various recently approved ones for MF (Vonjo etc) that are more related to Gen 1 Jak-i's. The concept is Gen 2 catches Jak2 while it's sleeping while Gen 1s are limited to acting on the awake (active) config of Jak2. This was
EPguy
in
MPN Voice
28 days ago
Itching!
If anyone can please help? I've had aquagenic pruritis badly in the past but the wonder drug ruxulitinib stopped it completely. Such a relief. That was 5 yrs ago and it has returned with a vengeance. My hydroxycarbamide was stopped in February ( after 11 years use) even if I brush my skin now the itch
If anyone can please help? I've had aquagenic pruritis badly in the past but the wonder drug ruxulitinib stopped it completely. Such a relief. That was 5 yrs ago and it has returned with a vengeance. My hydroxycarbamide was stopped in February ( after 11 years use) even if I brush my skin now the itch
soomoo
in
MPN Voice
1 month ago
Besremi and Rux Combined
I was diagnosed with PV in 2021 and on Hydroxy for about a year. Then in December 2022 was switched to Besremi. I've been on Bes for a little over a year and gradually increased dosage to current 300 mcg. My platelets and HCT kept rising until my last blood work when finally the platelets and HCT
I was diagnosed with PV in 2021 and on Hydroxy for about a year. Then in December 2022 was switched to Besremi. I've been on Bes for a little over a year and gradually increased dosage to current 300 mcg. My platelets and HCT kept rising until my last blood work when finally the platelets and HCT
C_Anne_Orange
in
MPN Voice
2 months ago
Itching in Myelofibrosis
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
Bullace
in
MPN Voice
2 months ago
Co pay assistance exhausted for Jakafi
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
Wewo01
in
MPN Voice
2 months ago
Scientists devise novel strategy to seek and destroy leukemia stem cells
** Scientists at City of Hope, one of the largest cancer research and treatment organizations in the United States, have devised an innovative approach to target and destroy hard-to-kill leukemia stem cells. The journal Blood has published the preclinical findings. By overcoming challenges, such as
** Scientists at City of Hope, one of the largest cancer research and treatment organizations in the United States, have devised an innovative approach to target and destroy hard-to-kill leukemia stem cells. The journal Blood has published the preclinical findings. By overcoming challenges, such as
PhysAssist
in
MPN Voice
2 months ago
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