Search
Search
About
Log in
Join
Experiences with
Mast cell leukaemia
Posts
Communities
3,564 public posts
Filter results
Besremi and Hematocrit Control
Closing in on five months on Besremi and my WBC and PLT's are now in the "normal" range, but HCT control continues to be elusive. I did get a 250ml PB on May 21, hoping that along with higher dose of Besremi (145) would knock the HCT down. The result? Exactly the same. 43.6 (My goal is 42 or lower
Closing in on five months on Besremi and my WBC and PLT's are now in the "normal" range, but HCT control continues to be elusive. I did get a 250ml PB on May 21, hoping that along with higher dose of Besremi (145) would knock the HCT down. The result? Exactly the same. 43.6 (My goal is 42 or lower
Elizka
in
MPN Voice
2 years ago
Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis..
Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis.. I think finally a very good successor for Hydrea.. This drug is not carcinogenetic and induces the mpn mutations to cell death. (See conference posters downloadlinks) on: https://imagobio.com/our-science/#pubs
Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis.. I think finally a very good successor for Hydrea.. This drug is not carcinogenetic and induces the mpn mutations to cell death. (See conference posters downloadlinks) on: https://imagobio.com/our-science/#pubs
Paul1993et
in
MPN Voice
2 years ago
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
Want to take advantage of all our features? Just log in!
Log in
or
Join
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
help with drinking 2 to 3 litres of water a day.
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
Kraskie1915
in
CLL Support
2 years ago
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
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
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
The Polymyalgia Rheumatica Diet: The Ultimate Nutritional Guide To Reversing And Managing Polymyalgia Rheumatica And Giant Cell Arteritis
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Yorksman
in
PMRGCAuk
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
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. By Kate Gilbert
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
SouthStrand
in
PMRGCAuk
2 years ago
Parietal Cell Antibody test refused by GP
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
Needleandthread44
in
Pernicious Anaemia Society
2 years ago
Update and meeting the team.
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
wendycu
in
MPN Voice
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
Webinar 3.30pm on Thursday - What can help when talking to others about your diagnosis? - Particularly relevant today during the COVID era.
Letting people know about your diagnosis can be key to getting the right support or can help others make needed adjustments for you. This can be difficult in reality, either for you or for those close to you. This webinar will support you by sharing the experience and advice of the panel of patients
Letting people know about your diagnosis can be key to getting the right support or can help others make needed adjustments for you. This can be difficult in reality, either for you or for those close to you. This webinar will support you by sharing the experience and advice of the panel of patients
HAIRBEAR_UK
in
Leukaemia Support
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
1
...
30
31
32
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1699 results
MPN Voice
870 results
PMRGCAuk
201 results
View top 10 communities
Sort by
Most Relevant
Newest