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On another subject …
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
lizzziep
in
MPN Voice
2 months 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
2 months 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
2 months ago
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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
2 months 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
2 months 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
2 months 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
2 months 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 Support
3 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
3 months 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
3 months 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
3 months ago
Momelotinib for Myelofibrosis
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Cazbolac
in
MPN Voice
3 months ago
CAR-T for CLL Hits Goal of Mid-Stage Trial - All patients had progressed on BTK inhibitors & most had failed venetoclax - MedPageToday, 6/12
[/i] [i]A single infusion of the chimeric antigen receptor (CAR) T-cell product lisocabtagene maraleucel (liso-cel; Breyanzi) was shown to induce complete response or remission in patients with relapsed or refractory chronic
lymphocytic
leukemia
(CLL) or small
lymphocytic
lymphoma (SLL), the phase
[/i] [i]A single infusion of the chimeric antigen receptor (CAR) T-cell product lisocabtagene maraleucel (liso-cel; Breyanzi) was shown to induce complete response or remission in patients with relapsed or refractory chronic
lymphocytic
leukemia
(CLL) or small
lymphocytic
lymphoma (SLL), the phase
cujoe
in
CLL Support
1 year ago
AXSL1 gene mutation
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
merlisa
in
MPN Voice
3 months ago
Foundation One heme blood test results
This test detected the TCL1A gene, and the report explains this gene is associated with T-prolymphocytic
leukemia
and T-cell chronic
lymphocytic
leukemia
. Also, with Burki lymphoma, in which mutations have been detected in 15% of cases.
This test detected the TCL1A gene, and the report explains this gene is associated with T-prolymphocytic
leukemia
and T-cell chronic
lymphocytic
leukemia
. Also, with Burki lymphoma, in which mutations have been detected in 15% of cases.
Cusube1967
in
CLL Support
1 year ago
Still on hold for stem cell transplant
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
dwolden
in
CLL Support
3 months ago
Now showing on Vjhemonc CLL channel, Epcoritamab for Richter's, identifying high risk CLL, Pirtobrutinib Genomic Evolution, HOVON 141/VISION
The latest videos on the CLL channel https://www.vjhemonc.com/subject/chronic-
lymphocytic
-
leukemia
/#latest-videos. complement some of the recent posts on new treatment developments.
The latest videos on the CLL channel https://www.vjhemonc.com/subject/chronic-
lymphocytic
-
leukemia
/#latest-videos. complement some of the recent posts on new treatment developments.
AussieNeil
Partner
in
CLL Support
1 year ago
Unmutated patients respond better to Ibrutinib/Venetoclax compared to mutated
https://cllsociety.org/2023/02/ash-2022-dr-talha-munir-on-how-ighv-mutation-status-of-chronic-
lymphocytic
-
leukemia
-cll-affects-response-to-combination-ibrutinib-plus-venetoclax/
https://cllsociety.org/2023/02/ash-2022-dr-talha-munir-on-how-ighv-mutation-status-of-chronic-
lymphocytic
-
leukemia
-cll-affects-response-to-combination-ibrutinib-plus-venetoclax/
Greenbunnies
in
CLL Support
1 year 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
4 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
4 months ago
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