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Richter transformation of chronic lymphocytic leukaemia: a British Society for Haematology Good Practice Paper
Richter's - we all dread that word and try not to think about it but if the worst does happen then it's good to be well informed, preferably beforehand. This short paper from the British Society for Haematology was written by the leading CLL/Richter's doctors in the UK and sets out best practice for
Richter's - we all dread that word and try not to think about it but if the worst does happen then it's good to be well informed, preferably beforehand. This short paper from the British Society for Haematology was written by the leading CLL/Richter's doctors in the UK and sets out best practice for
Jm954
Administrator
in
CLL Support
2 years ago
Covid treatments in the UK - clinical guide
Some recent contributors e.g. https://healthunlocked.com/cllsupport/posts/148237718/antivirals-access-in-uk?utm_campaign=cllsupport&utm_medium=email&utm_source=notification&utm_term=new-daily+digest have highlighted ongoing issues with getting early access to treatments after being diagnosed with Covid
Some recent contributors e.g. https://healthunlocked.com/cllsupport/posts/148237718/antivirals-access-in-uk?utm_campaign=cllsupport&utm_medium=email&utm_source=notification&utm_term=new-daily+digest have highlighted ongoing issues with getting early access to treatments after being diagnosed with Covid
bennevisplace
in
CLL Support
2 years ago
Thrombocytosis of no known cause?
I have just been looking over my posts from 2008 2009 on another site when I was last at haematology with persistent high white count. Raised platelets and clotting out. I have read through my 7 page thread and in 2004 I had been referred with the same thing. After being discharged back then I had
I have just been looking over my posts from 2008 2009 on another site when I was last at haematology with persistent high white count. Raised platelets and clotting out. I have read through my 7 page thread and in 2004 I had been referred with the same thing. After being discharged back then I had
Notdiagnosed
in
MPN Voice
2 years ago
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Has anyone moved from Hydroxy to Ruxolitinib.
I have an appointment next week to talk about changing my meds, because I have night sweats and bone ache for over 5 years now and it not getting better, the doctors are saying my body is to used to Hydroxy. I’ve had another bone marrow biopsy done, just waiting for the results and going to make plans
I have an appointment next week to talk about changing my meds, because I have night sweats and bone ache for over 5 years now and it not getting better, the doctors are saying my body is to used to Hydroxy. I’ve had another bone marrow biopsy done, just waiting for the results and going to make plans
wendycu
in
MPN Voice
2 years ago
New to CLL so confused
Hi! My husband is currently being diagnosed with CLL 55 years old Very healthy Had a routine blood test with WBC at 17,000 And doctor said Probably CLL sent us to Oncologist Oncologist did Flow and called to say positive Waiting on FISH test My husband does not feel one bit sick All other blood
Hi! My husband is currently being diagnosed with CLL 55 years old Very healthy Had a routine blood test with WBC at 17,000 And doctor said Probably CLL sent us to Oncologist Oncologist did Flow and called to say positive Waiting on FISH test My husband does not feel one bit sick All other blood
Puglove55
in
CLL Support
2 years ago
Update 6.5
Based on the recent increase in HCT (05/11=46.3%) we decided to up the Besremi dose from 110mcg to 150mcg. First 150mcg dose was 05/25. HCT on 05/27 was 46.5% - too soon for the increased dose to be effective. We are planning to give the higher dose some time to see how it works. If the HCT does
Based on the recent increase in HCT (05/11=46.3%) we decided to up the Besremi dose from 110mcg to 150mcg. First 150mcg dose was 05/25. HCT on 05/27 was 46.5% - too soon for the increased dose to be effective. We are planning to give the higher dose some time to see how it works. If the HCT does
hunter5582
in
MPN Voice
2 years ago
lactase dehydrogenase
Did you all have this blood test. I have looked at my blood tests for 2 weeks time and it is included prior to my appointment so I think my consultant is being thorough maybe. What reason would she do this test for? Could be due to persistent Leukocytosis as well. Remember I'm not diagnosed with anything
Did you all have this blood test. I have looked at my blood tests for 2 weeks time and it is included prior to my appointment so I think my consultant is being thorough maybe. What reason would she do this test for? Could be due to persistent Leukocytosis as well. Remember I'm not diagnosed with anything
Notdiagnosed
in
MPN Voice
2 years ago
High Alkaline Phosphatase
I had bloodwork recently, for a physician other than my CLL Specialist, who told me today that one of the abnormal readings was Alkaline Phosphatase. He suggested that I see a Gastroenterologist. My reading was 222. I know it is a liver enzyme, and on a recent six month visit with my local CLL doctor
I had bloodwork recently, for a physician other than my CLL Specialist, who told me today that one of the abnormal readings was Alkaline Phosphatase. He suggested that I see a Gastroenterologist. My reading was 222. I know it is a liver enzyme, and on a recent six month visit with my local CLL doctor
wizzard166
in
CLL Support
2 years ago
2 months on Calquence
Did it take longer than 2 months on Calquence for any of you to start seeing your ALC decline and your RBC increase (after that initial spike and fall)? I'm 60 days into this and after the initial ALC spike and RBC drop, they really haven't budged since (not increasing anymore but just staying high)
Did it take longer than 2 months on Calquence for any of you to start seeing your ALC decline and your RBC increase (after that initial spike and fall)? I'm 60 days into this and after the initial ALC spike and RBC drop, they really haven't budged since (not increasing anymore but just staying high)
lpac
in
CLL Support
2 years ago
Besremi and Phlebotomy
Hello, I had my first PB last week since starting Besremi (January 2022). Besremi is doing great job on my WBC and PLT, but the HCT has climbed above my goal of 42. I waited two extra weeks hoping a higher dose at 110 might knock it down a bit, but no luck. At Hunter's suggestion, HEM approved 250
Hello, I had my first PB last week since starting Besremi (January 2022). Besremi is doing great job on my WBC and PLT, but the HCT has climbed above my goal of 42. I waited two extra weeks hoping a higher dose at 110 might knock it down a bit, but no luck. At Hunter's suggestion, HEM approved 250
Elizka
in
MPN Voice
2 years ago
Richter's syndrome - Update- Lecture by pathologist Elias Campo
Hello everyone Yesterday I had the pleasure of attending a conference given by the pathologist PR Elias Campo at the Oncopole hospital in Toulouse. The topic was to talk about LLC and above all the main topic was the Richter Transformation. It was the first time that this transformation was discussed
Hello everyone Yesterday I had the pleasure of attending a conference given by the pathologist PR Elias Campo at the Oncopole hospital in Toulouse. The topic was to talk about LLC and above all the main topic was the Richter Transformation. It was the first time that this transformation was discussed
Priss69
in
CLL Support
2 years ago
Waiting for Pirtobrutinib
My husband has been on venetoclax for 3 years and a recent bone marrow biopsy shows cancer is growing and is up to 60%. His oncologist wants to put him on Pirtobrutinib, but it isn’t available yet. Does anyone know we can gain early access to this drug? He is 76 , diagnosed 13 years ago. He was
My husband has been on venetoclax for 3 years and a recent bone marrow biopsy shows cancer is growing and is up to 60%. His oncologist wants to put him on Pirtobrutinib, but it isn’t available yet. Does anyone know we can gain early access to this drug? He is 76 , diagnosed 13 years ago. He was
KLWC
in
CLL Support
2 years ago
Ruxolitinib
Husband has PV and MPN currently on Ruxolitinib which for him has been amazing and life saving. Only drawback is having had some skin cancers. Presently he has a lot of sores on head and face that will not clear and having problems with doctors not recognising that these sores and scabs can yet again
Husband has PV and MPN currently on Ruxolitinib which for him has been amazing and life saving. Only drawback is having had some skin cancers. Presently he has a lot of sores on head and face that will not clear and having problems with doctors not recognising that these sores and scabs can yet again
waddles22
in
MPN Voice
2 years ago
what provoked my CLL?
Educating myself about CLL, I read that prolonged stimulation of the immune system in combination with genetic mutations and / or predisposition leads to CLL. I see myself as the ideal candidate for this disease. In a study about 10 years ago, it was found that one of the little proven risk factors
Educating myself about CLL, I read that prolonged stimulation of the immune system in combination with genetic mutations and / or predisposition leads to CLL. I see myself as the ideal candidate for this disease. In a study about 10 years ago, it was found that one of the little proven risk factors
Yalokin
in
CLL Support
2 years ago
BESREMI ACHIEVES PATIENT-SPECIFIC TREATMENT GOALS IN POLYCYTHEMIA VERA: FINAL RESULTS FROM THE PROUD-PV/CONTINUATION-PV STUDIES
« No phlebotomies were required to maintain hematocrit <45% in the 6th year of treatment in 81.4% of patients receiving Besremi compared with 60.0% of patients in the control arm (p=0.005). Depletion of the JAK2V617F alle burden, which may lower the risk of progression to myelofibrosis, was observed
« No phlebotomies were required to maintain hematocrit <45% in the 6th year of treatment in 81.4% of patients receiving Besremi compared with 60.0% of patients in the control arm (p=0.005). Depletion of the JAK2V617F alle burden, which may lower the risk of progression to myelofibrosis, was observed
Manouche
in
MPN Voice
2 years ago
Questions about Jakafi
Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. For the most part I feel fine. My Hematologist would like me to try Jakafi. I had a bad reaction to Hydroxy and Anagrelide. Currently on aspirin and clopidigrel (Plavix) and other than lots of bruising, no other issues
Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. For the most part I feel fine. My Hematologist would like me to try Jakafi. I had a bad reaction to Hydroxy and Anagrelide. Currently on aspirin and clopidigrel (Plavix) and other than lots of bruising, no other issues
Bluetoday1
in
MPN Voice
2 years ago
Hydroxyurea-induced ankle ulcers
85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis. Now have a nasty ankle ulcer and my doc wants me to switch to Jakafi....disinclined to do that until I exhaust all the alternatives (cost, worry about taking a drug that kills RBC when I'm already ~40% below the lower
85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis. Now have a nasty ankle ulcer and my doc wants me to switch to Jakafi....disinclined to do that until I exhaust all the alternatives (cost, worry about taking a drug that kills RBC when I'm already ~40% below the lower
veryoldman
in
MPN Voice
2 years ago
Anyone with Exon 12 mutation out there?
Hi Everyone, I was diagnosed a year and a half ago with polycythemia vera with a negative v617f mutation and a positive Exon 12 mutation. The literature says that about 95% of the p-vera cases are positive for v617f while 3% have one of many Exon 12 mutations. The disease presents itself a little
Hi Everyone, I was diagnosed a year and a half ago with polycythemia vera with a negative v617f mutation and a positive Exon 12 mutation. The literature says that about 95% of the p-vera cases are positive for v617f while 3% have one of many Exon 12 mutations. The disease presents itself a little
gvibes
in
MPN Voice
2 years ago
World Blood Cancer Day May 28th
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Dovme
in
MPN Voice
2 years ago
2022 NCCN Guidelines for MPNs
Another good resource posted by our friends from the MPN Research Foundation. 2022 National Comprehensive Cancer Network Guidelines - Myeloproliferative Neoplasms. Nice summary on a number of MPN topics written for patients. Great for someone new to MPNs, and a good review for all. https://www.nccn.org
Another good resource posted by our friends from the MPN Research Foundation. 2022 National Comprehensive Cancer Network Guidelines - Myeloproliferative Neoplasms. Nice summary on a number of MPN topics written for patients. Great for someone new to MPNs, and a good review for all. https://www.nccn.org
hunter5582
in
MPN Voice
2 years ago
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