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Second opinion
Hi,I suffer from polycythaemia vera and have done so for the last 7 years. I am on hydroxycarbamide, which they have kept increasing the dosage, but it is failing to keep my platelet levels etc in check. The consultant wants to give me a bone marrow biopsy and change my medication, but I would like a
Hi,I suffer from polycythaemia vera and have done so for the last 7 years. I am on hydroxycarbamide, which they have kept increasing the dosage, but it is failing to keep my platelet levels etc in check. The consultant wants to give me a bone marrow biopsy and change my medication, but I would like a
Georgehb
in
MPN Voice
2 years ago
9 month Besremi update
Hi All, Latest test results showed that I need a phlebotomy: My HCT was 44.5 and though I'm slightly increasing my Besremi dose (now at 160ish), it hasn't kept the HCT under my target of 42. I went ahead and got a phlebotomy this past weekend--the full amount of 500ml. the previous one I had was
Hi All, Latest test results showed that I need a phlebotomy: My HCT was 44.5 and though I'm slightly increasing my Besremi dose (now at 160ish), it hasn't kept the HCT under my target of 42. I went ahead and got a phlebotomy this past weekend--the full amount of 500ml. the previous one I had was
Elizka
in
MPN Voice
2 years ago
Treatment of Richter's syndrome - ASH 2022 Education Program
This year's American Society of Hematology (ASH) annual conference is now underway and the ASH Education Program, Volume 2022, Issue 1 booklet that was published on 9 December 2022 is now available at: https://ashpublications.org/hematology/issue/2022/1 It contains three review articles from sessions
This year's American Society of Hematology (ASH) annual conference is now underway and the ASH Education Program, Volume 2022, Issue 1 booklet that was published on 9 December 2022 is now available at: https://ashpublications.org/hematology/issue/2022/1 It contains three review articles from sessions
CLLerinOz
Administrator
in
CLL Support
2 years ago
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Ruxolitinib and urinary tract infections
I've been on Jakafi for a couple of months and am starting to see indications of a possible bladder infection. I understand that UTIs are a reported side effect of this medication. I found a posting on this topic from a few years ago and was wondering if anyone else has been having this problem.
I've been on Jakafi for a couple of months and am starting to see indications of a possible bladder infection. I understand that UTIs are a reported side effect of this medication. I found a posting on this topic from a few years ago and was wondering if anyone else has been having this problem.
sbs_patient
in
MPN Voice
2 years ago
Covid vaccines , boosters and shingles
I am feeling better after 4 weekly infusions of Gazyva and 2 blood transfusions 1 week apart .... it was a sunny day here in southern oregon .. and my wife and i had a nice bike ride with our 2 dogs .. i would like some of you researchers to let me know if this article applies to us CLL patience .
I am feeling better after 4 weekly infusions of Gazyva and 2 blood transfusions 1 week apart .... it was a sunny day here in southern oregon .. and my wife and i had a nice bike ride with our 2 dogs .. i would like some of you researchers to let me know if this article applies to us CLL patience .
craterlake
in
CLL Support
2 years ago
An antibody for myelofibrosis – “that’s a true discovery”
In about 20% of people with myelofibrosis, if left unchecked, this severe type of myeloproliferative neoplasm (MPN) can transform to
acute
leukaemia
. “We still don’t know why some patients progress quickly and some slowly.
In about 20% of people with myelofibrosis, if left unchecked, this severe type of myeloproliferative neoplasm (MPN) can transform to
acute
leukaemia
. “We still don’t know why some patients progress quickly and some slowly.
socrates_8
in
MPN Voice
2 years ago
Chronic lymphocytic leukemia treatment algorithm 2022
This 29 November 2022 review article published in the [i]Blood Cancer Journal[/i] presents an up-to-date treatment algorithm for CLL. https://www.nature.com/articles/s41408-022-00756-9 [i]"The treatment landscape for patients with chronic lymphocytic leukemia (CLL) has changed considerably with the
This 29 November 2022 review article published in the [i]Blood Cancer Journal[/i] presents an up-to-date treatment algorithm for CLL. https://www.nature.com/articles/s41408-022-00756-9 [i]"The treatment landscape for patients with chronic lymphocytic leukemia (CLL) has changed considerably with the
CLLerinOz
Administrator
in
CLL Support
2 years ago
Stopped using Evusheld
I received this message from UCSF. I believe, soon they will stop using it everywhere else too. In recent weeks, California has seen a rapid increase and dominance in circulation of COVID-19 Omicron subvariants which are resistant to our current monoclonal antibody treatment (bebtelovimab) and prophylaxis
I received this message from UCSF. I believe, soon they will stop using it everywhere else too. In recent weeks, California has seen a rapid increase and dominance in circulation of COVID-19 Omicron subvariants which are resistant to our current monoclonal antibody treatment (bebtelovimab) and prophylaxis
shazie
in
CLL Support
2 years ago
Promising research is currently underway to use humanized bispecific single-domain antibodies
I was wondering if anyone has seen this new trial for applicable candidates https://cllsociety.org/2022/11/ash-2021-bispecific-v%CE%B39v%CE%B42-t-and-type-1-nkt-cell-engager-lava-051-as-first-in-class-clinical-candidate-to-target-cd1d-expressing-cll-mm-and-aml/ ASH 2021: Bispecific Vγ9Vδ2-T and
I was wondering if anyone has seen this new trial for applicable candidates https://cllsociety.org/2022/11/ash-2021-bispecific-v%CE%B39v%CE%B42-t-and-type-1-nkt-cell-engager-lava-051-as-first-in-class-clinical-candidate-to-target-cd1d-expressing-cll-mm-and-aml/ ASH 2021: Bispecific Vγ9Vδ2-T and
spi3
in
CLL Support
2 years ago
The Gut Microbiota in Patients with Polycythemia Vera is Distinct from that of Healthy Controls and Varies by Treatment
»Recombinant interferon-α2 (IFN) treatment of patients with PV has been shown to be disease-modifying in terms of normalization of elevated blood cell counts in concert with a reduction in the JAK2V617F allelic burden. Therefore, we hypothesized that patients treated with IFN might have a composition
»Recombinant interferon-α2 (IFN) treatment of patients with PV has been shown to be disease-modifying in terms of normalization of elevated blood cell counts in concert with a reduction in the JAK2V617F allelic burden. Therefore, we hypothesized that patients treated with IFN might have a composition
Manouche
in
MPN Voice
2 years ago
STATIC now beginning to open at sites in the UK
The long awaited successor to FLAIR for patients randomised to one of the Ibrutinib arms is finally ready to open at sites in the UK. When each site is ready will be up to local researchers and resource availability but the trial will be conducted in 100 NHS Centres in the UK (England, Wales, Scotland
The long awaited successor to FLAIR for patients randomised to one of the Ibrutinib arms is finally ready to open at sites in the UK. When each site is ready will be up to local researchers and resource availability but the trial will be conducted in 100 NHS Centres in the UK (England, Wales, Scotland
Jm954
Administrator
in
CLL Support
2 years ago
Essential thrombocythemia
When my daughter was 12 years she started to have migraine. At the same time the platels went high, Between 400 -539 for 11 months. Then they fall back to normal.I talked with many doctors about it and they said not to worry about the platels because children have elevated platels all the time. Over
When my daughter was 12 years she started to have migraine. At the same time the platels went high, Between 400 -539 for 11 months. Then they fall back to normal.I talked with many doctors about it and they said not to worry about the platels because children have elevated platels all the time. Over
Gurimalla
in
MPN Voice
2 years ago
Hematocrit question
Currently whenever my Hematocrit is over 44 I get a phlebotomy as I don't want it to get over 45. Two weeks ago it was 43.3 with my RBC at 5.77. Today my Hematocrit is 47.8 (RBC 6.33). To me this was a huge jump in just 2 weeks. I am thinking about changing when I get a phlebotomy to whenever my Hematocrit
Currently whenever my Hematocrit is over 44 I get a phlebotomy as I don't want it to get over 45. Two weeks ago it was 43.3 with my RBC at 5.77. Today my Hematocrit is 47.8 (RBC 6.33). To me this was a huge jump in just 2 weeks. I am thinking about changing when I get a phlebotomy to whenever my Hematocrit
wateron
in
MPN Voice
2 years ago
Concise summary of the treatment history of CLL from the 1950s to the present, by Dr Bruce Cheson, contributor to the iwCLL and much more
I knew Chlorambucil use for CLL dated back to the 1950's but I hadn't appreciated that was also the case for cyclophosphamide, (the 'C' in FCR). It took until the early 90's before Fludarabine, the 'F' in FCR joined, then Rituximab (the 'R') just over 20 years ago, started the long reign of FCR as the
I knew Chlorambucil use for CLL dated back to the 1950's but I hadn't appreciated that was also the case for cyclophosphamide, (the 'C' in FCR). It took until the early 90's before Fludarabine, the 'F' in FCR joined, then Rituximab (the 'R') just over 20 years ago, started the long reign of FCR as the
AussieNeil
Partner
in
CLL Support
2 years ago
Treatment-naive or relapsed CLL patients will soon have zanubrutinib/Brukinsa as a treatment option in the EU
[i]The EC approval is based on positive results from two Phase 3 clinical trials: SEQUOIA (NCT03336333), in patients with previously untreated CLL, and ALPINE (NCT03734016), in patients with R/R CLL. In these two trials, BRUKINSA demonstrated superior efficacy versus either bendamustine plus rituximab
[i]The EC approval is based on positive results from two Phase 3 clinical trials: SEQUOIA (NCT03336333), in patients with previously untreated CLL, and ALPINE (NCT03734016), in patients with R/R CLL. In these two trials, BRUKINSA demonstrated superior efficacy versus either bendamustine plus rituximab
AussieNeil
Partner
in
CLL Support
2 years ago
Has anyone tried Hydroxychloroquin for CLL?
There are studies showing HCQ causes apoptosis in CLL, lowering the WBC. Did anyone take HCQ for covid and find their WBC dropped?
There are studies showing HCQ causes apoptosis in CLL, lowering the WBC. Did anyone take HCQ for covid and find their WBC dropped?
sharksalive
in
CLL Support
2 years ago
PCV 20 Guidelines ? Get 20 if you already had 13 and 23 - or not ?
One pharmacist in Florida refused to give PCV 20 "because guidelines say that if you had other previous pneumo vaccinations you do not need PCV 20 !" I got PCV 13 in 2015 and PCV 23 in 2005. My understanding of the literature is that PCV20 is now "updated" and everybody should get it who may get it
One pharmacist in Florida refused to give PCV 20 "because guidelines say that if you had other previous pneumo vaccinations you do not need PCV 20 !" I got PCV 13 in 2015 and PCV 23 in 2005. My understanding of the literature is that PCV20 is now "updated" and everybody should get it who may get it
janvog
in
CLL Support
2 years ago
IgHV - unmutated and Acalabrutinib
Saw my CLL specialist yesterday and he had the results of the IgHV testing he requested. It seems I am unmutated status which isn't great news. At the time of starting treatment, we were in 1st year of pandemic and Acalabrutinib was offered. As he said normally I would have been offered FCR because
Saw my CLL specialist yesterday and he had the results of the IgHV testing he requested. It seems I am unmutated status which isn't great news. At the time of starting treatment, we were in 1st year of pandemic and Acalabrutinib was offered. As he said normally I would have been offered FCR because
Eucalyptus22
in
CLL Support
2 years ago
New to this and very afraid
Hello folks...My GP feels my bloods indicate CLL...PANIC. Referring me to a Haematology Doctor 58 with dependent kids and mortgage Any information re the below would be great. Immunophenotyping PB has been done with Tcell Tcell helper cells and cytoxiccell all low.. L22 L14 L7 B cells High 64 66
Hello folks...My GP feels my bloods indicate CLL...PANIC. Referring me to a Haematology Doctor 58 with dependent kids and mortgage Any information re the below would be great. Immunophenotyping PB has been done with Tcell Tcell helper cells and cytoxiccell all low.. L22 L14 L7 B cells High 64 66
Stew64
in
CLL Support
2 years ago
My MD Anderson doctor is leaving
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
Lisa-1959
in
CLL Support
2 years ago
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