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starting W&W
So I recently had two visits at the Mayo Clinic and had genetic testing along with ct scans. I’m “normal” karyotype, unmutated igh, unmutated tp53. I’m being transferred from my hematologist to a Cll specialist and in general…I feel pretty lucky. One thing my doc said though was that I was likely to
So I recently had two visits at the Mayo Clinic and had genetic testing along with ct scans. I’m “normal” karyotype, unmutated igh, unmutated tp53. I’m being transferred from my hematologist to a Cll specialist and in general…I feel pretty lucky. One thing my doc said though was that I was likely to
Snakejaw
in
CLL Support
2 years ago
Newly diagnosed Et Edinburgh
Hi is anyone from Edinburgh that has been diagnosed with Essential Thrombocythaemia Calr mutation?
Hi is anyone from Edinburgh that has been diagnosed with Essential Thrombocythaemia Calr mutation?
Green1988
in
MPN Voice
2 years ago
Relapse of CLL
Has anyone who had relapsed CLL had strong CLL symptoms prior to that diagnosis? I have blood work in a few weeks but my CLL symptoms have been very prevalent for a month now, and was curious if those were signs of having the CLL diagnosis again?
Has anyone who had relapsed CLL had strong CLL symptoms prior to that diagnosis? I have blood work in a few weeks but my CLL symptoms have been very prevalent for a month now, and was curious if those were signs of having the CLL diagnosis again?
Jvander11
in
CLL Support
2 years ago
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Jakafi
Hi all, I was diagnosed in jan 22. My platelets were over 1100. I was immediately put on hydroxyurea and phlebotomy’s every 2weeks. Levels started to improve and then Started having an intolerance to the hydroxyurea. Continued with phlebotomy’s only as I can’t take aspirin. Platlets back up to 1100
Hi all, I was diagnosed in jan 22. My platelets were over 1100. I was immediately put on hydroxyurea and phlebotomy’s every 2weeks. Levels started to improve and then Started having an intolerance to the hydroxyurea. Continued with phlebotomy’s only as I can’t take aspirin. Platlets back up to 1100
Mich1234567
in
MPN Voice
2 years ago
Night cramps
I have been having horrendous leg cramps every night - they move around from ankle to leg front or back of leg. My feet go into spasm. I have Myelofibrosis and am on Ruxolitinib. I am not getting much sleep. Can anyone help? SkipperL
I have been having horrendous leg cramps every night - they move around from ankle to leg front or back of leg. My feet go into spasm. I have Myelofibrosis and am on Ruxolitinib. I am not getting much sleep. Can anyone help? SkipperL
skipperL
in
MPN Voice
2 years ago
Hurray, Three Cheers for Venclexta & Rituxan
After 10 years, 5 months and 24 days since a Stage IV diagnosis of CLL, including 8 rounds of chemo/immunotherapy, I have been found to have no residual cancer cells after a bone marrow biopsy at Dana Farber on July 21, 2022! Three cheers for 6 doses of Rituxan and 24 months of Venclexta!! I have
After 10 years, 5 months and 24 days since a Stage IV diagnosis of CLL, including 8 rounds of chemo/immunotherapy, I have been found to have no residual cancer cells after a bone marrow biopsy at Dana Farber on July 21, 2022! Three cheers for 6 doses of Rituxan and 24 months of Venclexta!! I have
KevinCLLITP
in
CLL Support
2 years ago
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. In order to raise awareness, we are looking for leukaemia stories to share throughout
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. In order to raise awareness, we are looking for leukaemia stories to share throughout
LCAlex
in
Leukaemia Support
2 years ago
Advanced blood tests at 3 months after diagnosis.
Since the rush at the hematologists at the clinic where I will possibly be treated is sometimes big and now is the vacation season, I could not make an appointment earlier than August 2nd to see my hematologist (then he returns from vacation possibly). So I decided to get ahead of the events and show
Since the rush at the hematologists at the clinic where I will possibly be treated is sometimes big and now is the vacation season, I could not make an appointment earlier than August 2nd to see my hematologist (then he returns from vacation possibly). So I decided to get ahead of the events and show
Yalokin
in
CLL Support
2 years ago
CLL Society has especially great upcoming events posted just this week!
There is a wealth of knowledge to be obtained about Chronic
Lymphocytic
Leukemia
at cllsociety.org. Thank you Dr. Koffman! This post is left intentionally unlocked.
There is a wealth of knowledge to be obtained about Chronic
Lymphocytic
Leukemia
at cllsociety.org. Thank you Dr. Koffman! This post is left intentionally unlocked.
SofiaDeo
in
CLL Support
2 years ago
Mixed news from the CLL-VR study into SARS-Cov-2 vaccination in chronic lymphocytic leukemia
CLL Support community members can comment to this locked version of the post[/u]: https://healthunlocked.com/cllsupport/posts/private/147966630/mixed-news-from-the-cll-vr-study-into-sars-cov-2-vaccination-in-chronic-
lymphocytic
-
leukemia
CLL Support community members can comment to this locked version of the post[/u]: https://healthunlocked.com/cllsupport/posts/private/147966630/mixed-news-from-the-cll-vr-study-into-sars-cov-2-vaccination-in-chronic-
lymphocytic
-
leukemia
CLLerinOz
Administrator
in
CLL Support
2 years ago
EPO levels in ET and prognostics
We’ve seen some discussion of EPO levels and PV Dx. I am one of the members who has an unspecific mix of ET/PV and curious about EPO. I found a related report. Quick summary of the report: -Low EPO is not unusual in ET -Low EPO ET has lower MF transformation -Low EPO ET has higher PV progression
We’ve seen some discussion of EPO levels and PV Dx. I am one of the members who has an unspecific mix of ET/PV and curious about EPO. I found a related report. Quick summary of the report: -Low EPO is not unusual in ET -Low EPO ET has lower MF transformation -Low EPO ET has higher PV progression
EPguy
in
MPN Voice
2 years ago
Тhe first study to provide a comprehensive description of the epidemiology and global burden of CLL worldwide
quote CLL-related incidence, death, DALY burden and corresponding change trends CLL-related incidence and its change trends Globally, during the last 30 years, CLL-related incidence cases increased significantly from 40,537 in 1990 to 103,467 in 2019, with age-standardized incidence rate (ASIR) rising
quote CLL-related incidence, death, DALY burden and corresponding change trends CLL-related incidence and its change trends Globally, during the last 30 years, CLL-related incidence cases increased significantly from 40,537 in 1990 to 103,467 in 2019, with age-standardized incidence rate (ASIR) rising
Yalokin
in
CLL Support
2 years ago
very low ferritin with high iron saturation
I’m CLL , on Imbruvica since December 2022. Just received new labs. ferritin 13.00 ng/ml (normal range 24-336) Iron saturation 41% (normal range It appears contradictory to me. Iron level normal Iron binding capacity normal. Any insight is appreciated. Thanks
I’m CLL , on Imbruvica since December 2022. Just received new labs. ferritin 13.00 ng/ml (normal range 24-336) Iron saturation 41% (normal range It appears contradictory to me. Iron level normal Iron binding capacity normal. Any insight is appreciated. Thanks
mr1971
in
CLL Support
2 years ago
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
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
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
CLL Society This Week (USA Support Organization) - With Online Resources Available to All CLL Patients Worldwide
Take the Survey https://cllsociety.org/2022/04/help-us-better-understand-chronic-
lymphocytic
-
leukemia
-cll/ - Patient Preference Survey - Paid Opportunity CLL Society is a strong supporter of making sure the patient voice is elevated in decisions that directly impact them.
Take the Survey https://cllsociety.org/2022/04/help-us-better-understand-chronic-
lymphocytic
-
leukemia
-cll/ - Patient Preference Survey - Paid Opportunity CLL Society is a strong supporter of making sure the patient voice is elevated in decisions that directly impact them.
lankisterguy
Volunteer
in
CLL Support
2 years ago
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