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Pot Belly
Hi Does anyone have a problem with a pot belly. I have found recently that my trousers are tight and I am sure my spleen is not the cause. I have MF on Ruxolitinib 5mg 2 per day, eprex injections once a week and zario 3 times a week.
Hi Does anyone have a problem with a pot belly. I have found recently that my trousers are tight and I am sure my spleen is not the cause. I have MF on Ruxolitinib 5mg 2 per day, eprex injections once a week and zario 3 times a week.
WeeHarry
in
MPN Voice
4 years ago
Webinar - 6pm Tuesday 15th December - "Accessing your GP"
Dear friends please join us for this free webinar Leukaemia Care and Lymphoma Action are hosting this webinar to bring GPs and those affected by blood cancers together to share perspectives of how to make best use of Primary Care services during the current pandemic. Registration: https://us02web.zoom.us
Dear friends please join us for this free webinar Leukaemia Care and Lymphoma Action are hosting this webinar to bring GPs and those affected by blood cancers together to share perspectives of how to make best use of Primary Care services during the current pandemic. Registration: https://us02web.zoom.us
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Interesting article on venetoclax obinutuzumab and Ibrutinib trial
https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-triple-therapy-phase-2-trial
https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-triple-therapy-phase-2-trial
Research123
in
CLL Support
4 years ago
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AOP Orphan announces 5-year results on BESREMi® in PV at the ASH Annual Meeting 2020
Besremi showed clear advantages in efficacy and safety/tolerability versus best-available-treatment (mostly hydroxyurea) in this long-term treatment analysis in the randomized-controlled setting. * Freedom of phlebotomy with hematocrit below 45% was achieved in 81.8% of patients receiving Besremi vs
Besremi showed clear advantages in efficacy and safety/tolerability versus best-available-treatment (mostly hydroxyurea) in this long-term treatment analysis in the randomized-controlled setting. * Freedom of phlebotomy with hematocrit below 45% was achieved in 81.8% of patients receiving Besremi vs
Manouche
in
MPN Voice
4 years ago
Interferon in Polycythemia Vera (PV) Yields Improved Myelofibrosis-Free and Overall Survival
« Conclusion: Our results support early use of rIFN-a as a safe, disease-modifying treatment of rigorously defined PV to delay and potentially prevent Post PV myelofibrosis, and prolong overall survival of PV pts » https://ash.confex.com/ash/2020/webprogram/Paper141796.html
« Conclusion: Our results support early use of rIFN-a as a safe, disease-modifying treatment of rigorously defined PV to delay and potentially prevent Post PV myelofibrosis, and prolong overall survival of PV pts » https://ash.confex.com/ash/2020/webprogram/Paper141796.html
Manouche
in
MPN Voice
4 years ago
Inconclusive results from BMB
My bone narrow biopsy results were inconclusive. Positive in Jak 2. Negative tests results for lymphoma and leukemia. Red blood cell, white blood cell and platelets are all high. They cannot determine what exact disorder I have. As a result, there has been no recommendation on what to do with medication
My bone narrow biopsy results were inconclusive. Positive in Jak 2. Negative tests results for lymphoma and leukemia. Red blood cell, white blood cell and platelets are all high. They cannot determine what exact disorder I have. As a result, there has been no recommendation on what to do with medication
margaritampn
in
MPN Voice
4 years ago
"It will change everything" - two scientific blockbusters we'll all benefit from
Mainly of interest to geeks, but of import to everyone. Blockbuster # 1: CRISPR-Cas9 Within weeks we expect to have several effective vaccines against the coronavirus, vaccines made from scratch and rushed to market within 12 months. Hitherto, such a development schedule for a new vaccine was unthinkable
Mainly of interest to geeks, but of import to everyone. Blockbuster # 1: CRISPR-Cas9 Within weeks we expect to have several effective vaccines against the coronavirus, vaccines made from scratch and rushed to market within 12 months. Hitherto, such a development schedule for a new vaccine was unthinkable
bennevisplace
in
CLL Support
4 years ago
Is there a link between PV and Alopecia areata (AA)?
Hi, Back in Summer 2019 I was diagnosed with Alopecia areata (AA). Then in Feb 2020 a blood test picked up high red blood cells / haemoglobin and haematocrits. In October just gone I was told I almost certainly have PV despite being negative for JAK2. (I have low EPO too). I see my consultant later
Hi, Back in Summer 2019 I was diagnosed with Alopecia areata (AA). Then in Feb 2020 a blood test picked up high red blood cells / haemoglobin and haematocrits. In October just gone I was told I almost certainly have PV despite being negative for JAK2. (I have low EPO too). I see my consultant later
Lettie_WP
in
MPN Voice
4 years ago
Has anybody found that regular running helps with CLL?
Then I posted something on a Facebook page for people with CLL and the moderator linked to a medical journal article which found that exercise helps people who have CLL:
https://ashpublications.org/blood/article/132/Supplement%201/5540/263135/Exercise-and-Chronic-
-
Leukemia
-CLL So you
Then I posted something on a Facebook page for people with CLL and the moderator linked to a medical journal article which found that exercise helps people who have CLL:
https://ashpublications.org/blood/article/132/Supplement%201/5540/263135/Exercise-and-Chronic-
-
Leukemia
-CLL So you
HowardR
in
CLL Support
4 years ago
Help deciding about Transplant
I was diagnosed with Primary MF aged 49, 6 years ago. I am well managed on Ruxolitinib 30 mg daily, Aspirin and Acyclovir. My consuhas recently referred me to a transplant construct discuss a possible transplant. I am trying make my decision, which I am finding so difficult. As I am well controlled
I was diagnosed with Primary MF aged 49, 6 years ago. I am well managed on Ruxolitinib 30 mg daily, Aspirin and Acyclovir. My consuhas recently referred me to a transplant construct discuss a possible transplant. I am trying make my decision, which I am finding so difficult. As I am well controlled
Cazbolac
in
MPN Voice
4 years ago
2 Physicians with CLL! Join CLL Society for a CLL Society/ FaceBook Live event Dec. 16 and hear their stories live!
2 Physicians with CLL! Join us for a CLL Society/ Facebook Live Event Wednesday Dec. 16. Watch Dr. Brian Koffman and a fellow physician, both with CLL, share stories of the impact of their diagnosis and the strategies they implemented for increasing their knowledge about CLL and arranging proper care
2 Physicians with CLL! Join us for a CLL Society/ Facebook Live Event Wednesday Dec. 16. Watch Dr. Brian Koffman and a fellow physician, both with CLL, share stories of the impact of their diagnosis and the strategies they implemented for increasing their knowledge about CLL and arranging proper care
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Best use of time while waiting on FISH panel
Hello all, I just found this group, and am so grateful for this type of resource! My husband (41) of 2 months was diagnosed with cll on Friday. I'm so overwhelmed with the terms and information and I don't know where to begin. He is going in this week for the FISH test. My question is, what can we do
Hello all, I just found this group, and am so grateful for this type of resource! My husband (41) of 2 months was diagnosed with cll on Friday. I'm so overwhelmed with the terms and information and I don't know where to begin. He is going in this week for the FISH test. My question is, what can we do
MrsCc6
in
CLL Support
4 years ago
Ibrutinib for chronic lymphocytic leukemia in the setting of respiratory failure from severe COVID‐19 infection: Case report and literature
Ibrutinib for chronic
lymphocytic
leukemia
in the setting of respiratory failure from severe COVID‐19 infection: Case report and literature review . I have seen parallels with other studies related to supplementation (NAC, EGCG, Quercetin, Vitamin D) for COVID19 and CLL.
Ibrutinib for chronic
lymphocytic
leukemia
in the setting of respiratory failure from severe COVID‐19 infection: Case report and literature review . I have seen parallels with other studies related to supplementation (NAC, EGCG, Quercetin, Vitamin D) for COVID19 and CLL.
velderve
in
CLL Support
4 years ago
Jak2, MPN, all blood count is up! Nutrition and lifestyle changes?
Just came from the doctor. Still no definite result after my BMB. Tests are still incomplete. Some info: Positive for Jak2 , myeloproliferative neoplasms (MPN) Negative for leukemia and lymphoma Ultrasound came back good, no enlarged spleen, organs, etc. Next step is to see an MPN specialist. Then
Just came from the doctor. Still no definite result after my BMB. Tests are still incomplete. Some info: Positive for Jak2 , myeloproliferative neoplasms (MPN) Negative for leukemia and lymphoma Ultrasound came back good, no enlarged spleen, organs, etc. Next step is to see an MPN specialist. Then
margaritampn
in
MPN Voice
4 years ago
CLL Society ASH 2020 Day 4 Updates and Wrap-Up Less fun! No hugs. But we are leaving with a lot of treats!
CLL Society ASH 2020 Day 4 Updates and Wrap-Up Dec. 8th was the 4th and final day of ASH 2020, the American Society of Hematology Annual meeting and Exposition. Less fun! No hugs. But we are leaving with a lot of treats and the promise of much more to come. Here is some of what I am taking away from
CLL Society ASH 2020 Day 4 Updates and Wrap-Up Dec. 8th was the 4th and final day of ASH 2020, the American Society of Hematology Annual meeting and Exposition. Less fun! No hugs. But we are leaving with a lot of treats and the promise of much more to come. Here is some of what I am taking away from
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Cll and covid vaccine uk
Could anyone shed any light about the covid vaccine that is now available in the UK in regards to CLL my dad who is 80 and has stage 4 lymphoma was diagnosed with CLL 2 years ago. He is on watch and wait. They have told him that he is eligible to get covid vaccine in 6 weeks. I am not sure if it is
Could anyone shed any light about the covid vaccine that is now available in the UK in regards to CLL my dad who is 80 and has stage 4 lymphoma was diagnosed with CLL 2 years ago. He is on watch and wait. They have told him that he is eligible to get covid vaccine in 6 weeks. I am not sure if it is
Suskime
in
CLL Support
4 years ago
Disease Flare During Temporary Interruption of Ibrutinib Therapy in Patients with Chronic Lymphocytic Leukemia ( CLL ) - Pseudo Richters
2022
https://healthunlocked.com/cllsupport/posts/148836953/chronic-
lymphocytic
-
leukemia
-treatment-algorithm-2022 [i]8.
2022
https://healthunlocked.com/cllsupport/posts/148836953/chronic-
lymphocytic
-
leukemia
-treatment-algorithm-2022 [i]8.
AussieNeil
Partner
in
CLL Support
4 years ago
Revolution of Chronic Lymphocytic Leukemia Therapy: the Chemo-Free Treatment Paradigm
February 2020 A long paper and too much information to be able to summarise in this post but a nice account of current treatments, response rates, trial details and issues of resistance/intolerance. "[i]Over the last years, targeted therapy with small molecule inhibitors and antibodies has much replaced
February 2020 A long paper and too much information to be able to summarise in this post but a nice account of current treatments, response rates, trial details and issues of resistance/intolerance. "[i]Over the last years, targeted therapy with small molecule inhibitors and antibodies has much replaced
Jm954
Administrator
in
CLL Support
4 years ago
Scottish Medicines Agency has decided in favour of Venetoclax plus Obintuzumab for some patients.
The SMC has accepted venetoclax in combination with obinutuzumab for use in certain patients. There is a restriction that means that venetoclax may be used together with obinutuzumab as a fixed term treatment in two subgroups of patients with CLL who have not yet had any treatment for their CLL: - patients
The SMC has accepted venetoclax in combination with obinutuzumab for use in certain patients. There is a restriction that means that venetoclax may be used together with obinutuzumab as a fixed term treatment in two subgroups of patients with CLL who have not yet had any treatment for their CLL: - patients
Jm954
Administrator
in
CLL Support
4 years ago
Webinar for patients - HCL treatment and care in a changing landscape - 3.30pm GMT Monday 1st December
Dear HCL friends please join us Leukaemia Care are hosting this participative patient information webinar to explore the changing HCL treatment, management and care landscape. The webinar will help to explain the condition, how it is managed and treated, while exploring changes in treatment and challenges
Dear HCL friends please join us Leukaemia Care are hosting this participative patient information webinar to explore the changing HCL treatment, management and care landscape. The webinar will help to explain the condition, how it is managed and treated, while exploring changes in treatment and challenges
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
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