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Could you share your leukaemia diagnosis story?
Hi everyone, Alex here from
Leukaemia
Care. 👋 September is Blood Cancer Awareness Month and we will be running our Spot
Leukaemia
campaign, which aims to raise awareness of the signs and symptoms of
leukaemia
.
Hi everyone, Alex here from
Leukaemia
Care. 👋 September is Blood Cancer Awareness Month and we will be running our Spot
Leukaemia
campaign, which aims to raise awareness of the signs and symptoms of
leukaemia
.
LCAlex
in
Leukaemia Support
2 years ago
Spot Leukaemia Early campaign
Have been updating my story for
Leukaemia
Care's Spot
Leukaemia
Early campaign, they want to feature it again this year. Hopefully they will get local and some national newspapers to take it and possibly local television news programmes.
Have been updating my story for
Leukaemia
Care's Spot
Leukaemia
Early campaign, they want to feature it again this year. Hopefully they will get local and some national newspapers to take it and possibly local television news programmes.
kitchengardener2
in
CLL Support
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
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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
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
can Et turn into Leukaemia
this may sound silly but can ET turn into
leukaemia
Or does it turn into MF first? Also can ET be managed well with medication to prevent it turning to
Leukaemia
?
this may sound silly but can ET turn into
leukaemia
Or does it turn into MF first? Also can ET be managed well with medication to prevent it turning to
Leukaemia
?
Green1988
in
MPN Voice
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
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
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
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
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
Our 2022 Christmas Donations Appeal Will you help us to reach and support more CLL patients this Christmas?
This year has been another difficult year for everyone, especially for the vulnerable and the charities that support them, like CLL Support UK, the charity of which HealthUnlocked CLL Support is the online support presence.
We know that this
Christmas
may be more relaxed than the last
This year has been another difficult year for everyone, especially for the vulnerable and the charities that support them, like CLL Support UK, the charity of which HealthUnlocked CLL Support is the online support presence.
We know that this
Christmas
may be more relaxed than the last
AussieNeil
Partner
in
CLL Support
2 years ago
Can Hydrea Resolve (fix) Marrow?
In a recent thread one report has HU providing a strong benefit to marrow, esp for ET, but some in PV too, discussed here: https://healthunlocked.com/mpnvoice/posts/148588347/high-low-jak2-and-risk-of-mf-progression This is a surprise. So I did a quick search and two further reports come up supporting
In a recent thread one report has HU providing a strong benefit to marrow, esp for ET, but some in PV too, discussed here: https://healthunlocked.com/mpnvoice/posts/148588347/high-low-jak2-and-risk-of-mf-progression This is a surprise. So I did a quick search and two further reports come up supporting
EPguy
in
MPN Voice
2 years ago
MF and Fedratinib
I've had MF for over 30 years. I was rejected for transplant recently because not robust enough. I have been on Ruxolitinib for about 8 years very successfully but my already large spleen is growing again so my consultant has decided to switch me over to Fedratinib. I am grateful that there is an option
I've had MF for over 30 years. I was rejected for transplant recently because not robust enough. I have been on Ruxolitinib for about 8 years very successfully but my already large spleen is growing again so my consultant has decided to switch me over to Fedratinib. I am grateful that there is an option
Bullace
in
MPN Voice
2 years ago
test interpretation
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
DianeSH
in
CLL Support
2 years ago
A diet for CLL
Dear friends, I hope you are staying well. Last week I ate fruit with vitamine C, I exagerated with quantity and felt really bad. My lymph nodes were swallen and I felt very big fatigue. I m still on watch and wait (I was diagnosed with Cll in January 2018) and I wish to stay on it as long
Dear friends, I hope you are staying well. Last week I ate fruit with vitamine C, I exagerated with quantity and felt really bad. My lymph nodes were swallen and I felt very big fatigue. I m still on watch and wait (I was diagnosed with Cll in January 2018) and I wish to stay on it as long
Lela1212
in
CLL Support
2 years ago
Results from Phase 2 study of nivolumab plus ibrutinib in patients with diffuse large b-cell Richter Transformation of CLL
A research article that reports on "[i]A Phase 2 Study of Nivolumab Combined with Ibrutinib in Patients with Diffuse Large B-cell Richter Transformation of CLL[/i]" was published in the journal Blood Advances this week and provides some encouraging data for a population that is very challenging to treat
A research article that reports on "[i]A Phase 2 Study of Nivolumab Combined with Ibrutinib in Patients with Diffuse Large B-cell Richter Transformation of CLL[/i]" was published in the journal Blood Advances this week and provides some encouraging data for a population that is very challenging to treat
CLLerinOz
Administrator
in
CLL Support
2 years ago
How IFN targets Jak2 mutation
A fairly recent report discusses how IFN works against the mutation. I posted in a thread, but seems worth a top post. It's complex stuff but seems consistent. -In sum, it seems IFN forces damage to otherwise hidden Jak2's by stirring things up, but mutant ones fail faster once stirred. -- https
A fairly recent report discusses how IFN works against the mutation. I posted in a thread, but seems worth a top post. It's complex stuff but seems consistent. -In sum, it seems IFN forces damage to otherwise hidden Jak2's by stirring things up, but mutant ones fail faster once stirred. -- https
EPguy
in
MPN Voice
2 years ago
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