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Low MCH MCV?
Just a question to anyone else with ET who has dropping MCH & MCV levels, they were previously ok but getting lower each time, I’ve had varying reasons given for this & would be grateful for anyone else’s experience before I try to speak to my consultant again I’ve been told it could be to do with periods
Just a question to anyone else with ET who has dropping MCH & MCV levels, they were previously ok but getting lower each time, I’ve had varying reasons given for this & would be grateful for anyone else’s experience before I try to speak to my consultant again I’ve been told it could be to do with periods
Melaniem59
in
MPN Voice
4 years ago
Hyperbaric oxygen therapy...
I just read about a trial of volunteers in Israel who took hyperbaric oxygen therapy (HBOT) for 90 minutes a day, 5 days a week, for 3 months, and the results were apparently nothing less than extraordinary in reversing the ageing process. I then briefly checked the internet and found that dating back
I just read about a trial of volunteers in Israel who took hyperbaric oxygen therapy (HBOT) for 90 minutes a day, 5 days a week, for 3 months, and the results were apparently nothing less than extraordinary in reversing the ageing process. I then briefly checked the internet and found that dating back
Pogee
in
CLL Support
4 years ago
Newly Diagnosed, W&W, yearly visits?
Hi i was recently diagnosed a week ago, my MBL crossed over the 5000 threshold, and now officially RAI 0. Flow/FISH was done, im 13q deleted, ZAP70 and CD38 negative. Doc (oncologist) said it most likely be 10-15 years before i would need treatment, and said he is putting me on yearly checkups. I know
Hi i was recently diagnosed a week ago, my MBL crossed over the 5000 threshold, and now officially RAI 0. Flow/FISH was done, im 13q deleted, ZAP70 and CD38 negative. Doc (oncologist) said it most likely be 10-15 years before i would need treatment, and said he is putting me on yearly checkups. I know
Freeskier989
in
CLL Support
4 years ago
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Join us and spread the word about the symptoms of leukaemia
'We may be living in uncertain times, but there is one thing we are certain of: awareness of
leukaemia
needs to be dramatically improved.'
'We may be living in uncertain times, but there is one thing we are certain of: awareness of
leukaemia
needs to be dramatically improved.'
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
ICC ruled in favor of AOP Orphan Pharmaceuticals AG in arbitration proceedings pertaining to BESREMi®
«We are relieved that the ICC ruling compensates AOP Orphan now for the delay in getting BESREMi® approved in the European Union, and the delay in bringing this important medication to the patients suffering from polycythaemia vera, a rare and chronic disease of the blood building cells", explains Dr
«We are relieved that the ICC ruling compensates AOP Orphan now for the delay in getting BESREMi® approved in the European Union, and the delay in bringing this important medication to the patients suffering from polycythaemia vera, a rare and chronic disease of the blood building cells", explains Dr
Manouche
in
MPN Voice
4 years ago
Going well so far with MF on Ruxolitinib
When I was diagnosed with post ET Myelofibrosis in August, I was terrified and extremely grateful for the support on this forum. I thought I would just update you and let you know that Ruxolitinib appears to be working well for me. My counts are still not great but are, to quote my haematology nurse,
When I was diagnosed with post ET Myelofibrosis in August, I was terrified and extremely grateful for the support on this forum. I thought I would just update you and let you know that Ruxolitinib appears to be working well for me. My counts are still not great but are, to quote my haematology nurse,
Otterfield
in
MPN Voice
4 years ago
Today is World Leukemia Day
Dear friends Today, patients, patient groups, clinical groups and organisations across the world are uniting to raise awareness of
leukaemia
. By publicising the signs and symptoms we are working together to help
leukaemia
patients get diagnosed and provide better outcomes for them.
Dear friends Today, patients, patient groups, clinical groups and organisations across the world are uniting to raise awareness of
leukaemia
. By publicising the signs and symptoms we are working together to help
leukaemia
patients get diagnosed and provide better outcomes for them.
HAIRBEAR_UK
Administrator
in
CLL Support
4 years ago
SUGGESTIONS?
I started treatment (B+R) at the end of this past January for 6 months, the results were very good and my oncologist said he would probably start me on a 2 year maintenance program in 3 months of Rituximab every 3 months. I went back to see him after the 3 months and most of my blood work was good except
I started treatment (B+R) at the end of this past January for 6 months, the results were very good and my oncologist said he would probably start me on a 2 year maintenance program in 3 months of Rituximab every 3 months. I went back to see him after the 3 months and most of my blood work was good except
laldoroty
in
CLL Support
4 years ago
Leukemic Evolution of Polycythemia Vera and Essential Thrombocythemia
The authors performed next-generation sequencing on samples from 49 patients with polycythemia vera (PV, n=24) or essential thrombocytosis (ET, n=25) who developed leukemic transformation to identify the associated candidate driver genes. Hierarchical classification identified three mutational groups
The authors performed next-generation sequencing on samples from 49 patients with polycythemia vera (PV, n=24) or essential thrombocytosis (ET, n=25) who developed leukemic transformation to identify the associated candidate driver genes. Hierarchical classification identified three mutational groups
JT_Marlin
in
MPN Voice
4 years ago
Rosemary - another anti-leukemia spice!
A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, rose hips, strawberries and blackberries), EGCG (e.g., green tea) and Rosmarinic Acid (e.g., Rosemary) can work together to stop leukemia cells from proliferating. Here's the link: https://www.sciencedirect.com/science/article
A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, rose hips, strawberries and blackberries), EGCG (e.g., green tea) and Rosmarinic Acid (e.g., Rosemary) can work together to stop leukemia cells from proliferating. Here's the link: https://www.sciencedirect.com/science/article
HowardR
in
CLL Support
4 years ago
Life after transplant
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
KAS8
in
CLL Support
4 years ago
Richter Transformation - Update
Hi everybody how are you? I'd like to put you all in my current state, after full remission. As you know, they treated me with R-CHOP and did not transplant me. It was not necessary as no masses were found on my body when I did the pet scan. I was taking ibrutinib when I was diagnosed with Ricther. I
Hi everybody how are you? I'd like to put you all in my current state, after full remission. As you know, they treated me with R-CHOP and did not transplant me. It was not necessary as no masses were found on my body when I did the pet scan. I was taking ibrutinib when I was diagnosed with Ricther. I
Priss69
in
CLL Support
4 years ago
Novel and combination therapies for polycythemia vera and essential thrombocythemia: the dawn of a new era
« Promising novel agents in clinical testing include the histone deacetylase inhibitor givinostat, the telomerase inhibitor imetelstat, and the LSD-1 inhibitor IMG-7289 » https://www.tandfonline.com/doi/abs/10.1080/17474086.2020.1839887?journalCode=ierr20#.X45tb_0KltI.twitter
« Promising novel agents in clinical testing include the histone deacetylase inhibitor givinostat, the telomerase inhibitor imetelstat, and the LSD-1 inhibitor IMG-7289 » https://www.tandfonline.com/doi/abs/10.1080/17474086.2020.1839887?journalCode=ierr20#.X45tb_0KltI.twitter
Manouche
in
MPN Voice
4 years ago
How can you tell how many CLL cells are actually in your blood streams?
My Absolute Lymphocyte Count is at 10214 cells/mm³ is that CLL? I calculated my WBC 16.5 plus LYMPHS% 61.9 %...
My Absolute Lymphocyte Count is at 10214 cells/mm³ is that CLL? I calculated my WBC 16.5 plus LYMPHS% 61.9 %...
Laura3mini
in
CLL Support
4 years ago
CLL Aussie voices study - last call to add your voice to the PEEK study
This is a final call for Australians with CLL, their carers and family members to add their voice and register for the CLL PEEK study, conducted by the Centre for Community Driven Research ( CC-DR).
To register, email administration@cc-dr.org or go to www.cc-dr.org/peek/register/2020aucll
Catherine
This is a final call for Australians with CLL, their carers and family members to add their voice and register for the CLL PEEK study, conducted by the Centre for Community Driven Research ( CC-DR).
To register, email administration@cc-dr.org or go to www.cc-dr.org/peek/register/2020aucll
Catherine
AussieNeil
Partner
in
CLL Support
4 years ago
Awake worrying about your CLL? Stop It! Apply for a FREE online 2nd Opinion with a top CLL Expert.
CLL Society Expert Access™ Program: Awake worrying about your CLL? Apply for a FREE online 2nd Opinion with a top CLL Expert! Here at the CLL Society, we believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
CLL Society Expert Access™ Program: Awake worrying about your CLL? Apply for a FREE online 2nd Opinion with a top CLL Expert! Here at the CLL Society, we believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
"The Future of CAR-T Therapy: Can CAR-T Cure CLL?” Don’t miss the excitement Nov 17 with Dr. Fraietta, a true pioneer in CAR-T therapy!
CLL Society Webinar: Prepare to be amazed! Nov. 17th CAR-T Webinar "The Future of CAR-T Therapy: Can CAR-T Cure CLL?” CAR-T therapy is not yet approved in CLL. However, if you were to receive it in the future a living drug would be made from your own t-cells, re-engineered to recognize surface markers
CLL Society Webinar: Prepare to be amazed! Nov. 17th CAR-T Webinar "The Future of CAR-T Therapy: Can CAR-T Cure CLL?” CAR-T therapy is not yet approved in CLL. However, if you were to receive it in the future a living drug would be made from your own t-cells, re-engineered to recognize surface markers
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Webinar - Living with the psychological impact of leukaemia and lymphoma in the COVID-19 era
From time to time CLL Support partner with other charities that share our aims and objectives and we are pleased to promote this webinar from
Leukaemia
Care and Lymphoma Action. It's their first ever joint webinar for those living with a lymphoma or
leukaemia
diagnosis.
From time to time CLL Support partner with other charities that share our aims and objectives and we are pleased to promote this webinar from
Leukaemia
Care and Lymphoma Action. It's their first ever joint webinar for those living with a lymphoma or
leukaemia
diagnosis.
Jm954
Administrator
in
CLL Support
4 years ago
Cause of Secondary PV
I was recently diagnosed with secondary PV. Although I quit cigarettes 10 years ago, I have continued to smoke marijuana for pain management. Would this be enough for cause?
I was recently diagnosed with secondary PV. Although I quit cigarettes 10 years ago, I have continued to smoke marijuana for pain management. Would this be enough for cause?
Green1445
in
MPN Voice
4 years ago
Biopsy results
Hi, my boyfriend has CLL and is struggling with his hemoglobin and neutropenia. His numbers are not getting better. Doctors had to give him multiple blood transfusions and neupogen shot. Even with those, the numbers remain low. He is under Venetoclax treatment. Next week will have a bone marrow biopsy
Hi, my boyfriend has CLL and is struggling with his hemoglobin and neutropenia. His numbers are not getting better. Doctors had to give him multiple blood transfusions and neupogen shot. Even with those, the numbers remain low. He is under Venetoclax treatment. Next week will have a bone marrow biopsy
Gile
in
CLL Support
4 years ago
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