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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
Administrator
in
CLL Support
1 year 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
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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
Administrator
in
CLL Support
1 year 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
1 year 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
1 year ago
LET’S GET READY FOR WORLD CLL DAY ON 1 SEPTEMBER!
World CLL Day kicks off Blood Cancer Awareness Month and helps build momentum towards other major events involving the CLL community on World
Leukaemia
Day (4 September), World Lymphoma Awareness Day (15 September) and many other activities during the month of September.
World CLL Day kicks off Blood Cancer Awareness Month and helps build momentum towards other major events involving the CLL community on World
Leukaemia
Day (4 September), World Lymphoma Awareness Day (15 September) and many other activities during the month of September.
HAIRBEAR_UK
Founder Admin
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
1 year 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
1 year 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
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
Administrator
in
CLL Support
1 year 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
Webinar 3.30pm on Thursday - What can help when talking to others about your diagnosis? - Particularly relevant today during the COVID era.
Panel: Jamie Woods acute
leukaemia
patient Margaret Miller chronic lymphocytic
leukaemia
patient Caroline Kerr, Clinical Nurse Specialist for
Leukaemia
& MPN at Belfast City Hospital, Belfast Health and Social Care Trust Catherine Langton, Myeloid Specialist Nurse at Leeds Teaching Hospitals NHS
Panel: Jamie Woods acute
leukaemia
patient Margaret Miller chronic lymphocytic
leukaemia
patient Caroline Kerr, Clinical Nurse Specialist for
Leukaemia
& MPN at Belfast City Hospital, Belfast Health and Social Care Trust Catherine Langton, Myeloid Specialist Nurse at Leeds Teaching Hospitals NHS
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
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
Celebrating -nasties have gone!
After several weeks of strong antibiotics, told pseudomonas etc has gone, no further action, three cheers! Now I have to get over tiredness caused by them, and hopefully go out in Jag when feel ok. Yes Jag has replacement seat belt lock, passed its MOT. Now going to Nebulise, always things to keep
After several weeks of strong antibiotics, told pseudomonas etc has gone, no further action, three cheers! Now I have to get over tiredness caused by them, and hopefully go out in Jag when feel ok. Yes Jag has replacement seat belt lock, passed its MOT. Now going to Nebulise, always things to keep
Morrison10
in
Lung Conditions Community Forum
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
Request - Reco for excellent haematologists in Portugal
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also request for the names of hospitals or institutes focusing on Hematology
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also request for the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
MPN Voice
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
Volunteer
in
CLL Support
2 years ago
Essential Thrombocythaemia
Hi, I have just been diagnosed with a rear blood condition called Essential Thrombocythaemia (ET The courses of treatment offered to me are Hydroxycarbamide and Pegasys. I would like to ask if anyone else has the same condition and if they are taking one of the mentioned drugs and if so how do you find
Hi, I have just been diagnosed with a rear blood condition called Essential Thrombocythaemia (ET The courses of treatment offered to me are Hydroxycarbamide and Pegasys. I would like to ask if anyone else has the same condition and if they are taking one of the mentioned drugs and if so how do you find
Snowking
in
Leukaemia CARE
2 years ago
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