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Curious -- family leukemia history anyone?
I recall reading early on that CLL was thought to be possibly genetic, with 20 years younger in succeeding generations. I have two sons. I was diagnosed at 70. Ironically or not, one of my 4 uncles got leukemia around 90 (couldn't find out what kind), so I've wanted to follow the genetic implications
I recall reading early on that CLL was thought to be possibly genetic, with 20 years younger in succeeding generations. I have two sons. I was diagnosed at 70. Ironically or not, one of my 4 uncles got leukemia around 90 (couldn't find out what kind), so I've wanted to follow the genetic implications
Vlaminck
in
CLL Support
3 years ago
INF+ ATO Study, "A knockout combination for MPN stem cells"
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
EPguy
in
MPN Voice
3 years ago
APS and Lymphoma. Newly diagnosed, need advice
Hello everyone, I had an axillary lymph node biopsy and just found out that I have follicular lymphoma. I am looking for guidance and advice from anyone who has this type of cancer. Thank you ♡♡♡
Hello everyone, I had an axillary lymph node biopsy and just found out that I have follicular lymphoma. I am looking for guidance and advice from anyone who has this type of cancer. Thank you ♡♡♡
Piscesdreamer
in
Hughes Syndrome APS Forum
3 years ago
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Is strength training helpful?
Hi Everyone, I have just joined and also recently diagnosed with cll. I have learned that diet and exercise is very helpful with controlling cll. I just wondered if strength/weight training was also helpful? Thanks
Hi Everyone, I have just joined and also recently diagnosed with cll. I have learned that diet and exercise is very helpful with controlling cll. I just wondered if strength/weight training was also helpful? Thanks
arsenal0
in
CLL Support
3 years ago
Great Antibodies after 3rd Primary Dose of Pfizer
Hi, I was diagnosed with CLL in September 2019 and am on watch and wait. Six weeks after my second Astra Zeneca vaccination I took a Covid Antibody test from Testing For All and my result was 106.00 U/ml. Today I got my result 6 weeks following my third Primary Dose of Pfizer. I am extremely happy
Hi, I was diagnosed with CLL in September 2019 and am on watch and wait. Six weeks after my second Astra Zeneca vaccination I took a Covid Antibody test from Testing For All and my result was 106.00 U/ml. Today I got my result 6 weeks following my third Primary Dose of Pfizer. I am extremely happy
1Surfer9
in
CLL Support
3 years ago
Vaccine third dose experience!
Hi I’m a regular visitor here but I think this my first post! I have essential thrombocythaemia and am a patient of Haematology at Bedford Hospital (who I must say are excellent). However, I thought people might be interested in my experience of trying to obtain a third COVID-19 vaccine dose. I received
Hi I’m a regular visitor here but I think this my first post! I have essential thrombocythaemia and am a patient of Haematology at Bedford Hospital (who I must say are excellent). However, I thought people might be interested in my experience of trying to obtain a third COVID-19 vaccine dose. I received
Maythyme
in
MPN Voice
3 years ago
Ironman 70.3 Waco Triathlon with CLL/SLL
Hi all! Raced in Ironman 70.3 Waco yesterday! My 2nd half since being diagnosed with CLL/SLL in 2011. I turn 50 in January. You don’t need to do an Ironman, but you do need to MOVE! *And, walking absolutely counts as exercise! Take your time, listen to your body & do what’s fun (for you)! Almost no
Hi all! Raced in Ironman 70.3 Waco yesterday! My 2nd half since being diagnosed with CLL/SLL in 2011. I turn 50 in January. You don’t need to do an Ironman, but you do need to MOVE! *And, walking absolutely counts as exercise! Take your time, listen to your body & do what’s fun (for you)! Almost no
BJollie
in
CLL Support
3 years ago
Greetings
Hi there, new to the group so thought i would introduce myself. I had PV diagnosed in 2009 but mutated to MF confirmed in April 2021, on Jakavi to reduce my massive splenomegaly and doing well. Hoping for a SCT in the New Year. I’m just turned 59, healthy and pretty fit other than the MF and associated
Hi there, new to the group so thought i would introduce myself. I had PV diagnosed in 2009 but mutated to MF confirmed in April 2021, on Jakavi to reduce my massive splenomegaly and doing well. Hoping for a SCT in the New Year. I’m just turned 59, healthy and pretty fit other than the MF and associated
Hitchc0tt5
in
MPN Voice
3 years ago
Share your story for our Spot Leukaemia campaign in September for Blood Cancer Awareness Month.
We’re looking for someone who was diagnosed with a chronic
leukaemia
at age 65+ who would like to share your story for our Spot
Leukaemia
campaign, raising awareness of the symptoms of
leukaemia
.
We’re looking for someone who was diagnosed with a chronic
leukaemia
at age 65+ who would like to share your story for our Spot
Leukaemia
campaign, raising awareness of the symptoms of
leukaemia
.
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Hairy cell leukaemia - 3 months after chemo
Hi, Telephone consultation with my haematologist this morning, rather stunning blood test results - haemoglobin up from 110 to 135 so now normal... white cell count up from 1.7 to 4.1 so now normal, neutrophils up from 1.2 to 2.4 so now normal, although platelets down from 138 to 106 so still not in
Hi, Telephone consultation with my haematologist this morning, rather stunning blood test results - haemoglobin up from 110 to 135 so now normal... white cell count up from 1.7 to 4.1 so now normal, neutrophils up from 1.2 to 2.4 so now normal, although platelets down from 138 to 106 so still not in
frankmok
in
Leukaemia Support
3 years ago
About MF progression
I have progressed this year to MF from ET with grade 3 fibrosis. I'm reasonably well in myself but my platelets have slumped to 70. I started on 5mg ruxolitinib 6 weeks ago so I know it is too early to say if it's working, however I would like to know more about how it how it feels to have MF getting
I have progressed this year to MF from ET with grade 3 fibrosis. I'm reasonably well in myself but my platelets have slumped to 70. I started on 5mg ruxolitinib 6 weeks ago so I know it is too early to say if it's working, however I would like to know more about how it how it feels to have MF getting
Scaredy_cat
in
MPN Voice
3 years ago
Night Sweats
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Navy12
in
MPN Voice
3 years ago
Leukaemia care/NHS antibody trial
Has anyone else seen the NHS antibody trial for cancer patients, it came in an email from
leukaemia
care I tried to sign up but two questions are Are you on blood thinners? Do you have any excess bleeding disorders like haemophilia?
Has anyone else seen the NHS antibody trial for cancer patients, it came in an email from
leukaemia
care I tried to sign up but two questions are Are you on blood thinners? Do you have any excess bleeding disorders like haemophilia?
Melaniem59
in
MPN Voice
3 years ago
Video for Spot Leukaemia Early
Good morning all, here is the link to the video I made for the Spot
leukaemia
early campaign. Please watch and share if you can. https://fb.watch/824OSoFxEv/
Good morning all, here is the link to the video I made for the Spot
leukaemia
early campaign. Please watch and share if you can. https://fb.watch/824OSoFxEv/
kitchengardener2
in
Lung Conditions Community Forum
3 years ago
Webinar 11th August 12.30pm, CAR - T therapy update
Luminita Keating, CAR-T Clinical Nurse Specialist, Addenbrooke's, Cambridge University Hospitals NHS Foundation Trust Deborah Sims, CAR-T treated chronic lymphocytic
leukaemia
(CLL) patient Sophie Wheldon, CAR-T treated acute lymphoblastic
leukaemia
(ALL) patient
Luminita Keating, CAR-T Clinical Nurse Specialist, Addenbrooke's, Cambridge University Hospitals NHS Foundation Trust Deborah Sims, CAR-T treated chronic lymphocytic
leukaemia
(CLL) patient Sophie Wheldon, CAR-T treated acute lymphoblastic
leukaemia
(ALL) patient
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
"Becoming Your Own (CLL)Project Manager" by Doreen Zetterlund is part of CLL Society & Huntsman Cancer Institute's Monday Nov. 8th CLL Forum
Tuesday Nov. 9th! Still time to register! Patients who manage their own CLL strategies without the help of a caregiver are in for a rare treat as CLL patient Doreen Zetterlund leads us through her amazing "how to" video Becoming Your Own Project Manager. Doreen's presentation is part of Huntsman Cancer
Tuesday Nov. 9th! Still time to register! Patients who manage their own CLL strategies without the help of a caregiver are in for a rare treat as CLL patient Doreen Zetterlund leads us through her amazing "how to" video Becoming Your Own Project Manager. Doreen's presentation is part of Huntsman Cancer
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
Webinar 3.30pm Thursday 29th July - Use of blood products for the care of leukaemia patients
The aim of this webinar is to discuss the importance of blood product transfusions and infusions during the care of
leukaemia
patients.
The aim of this webinar is to discuss the importance of blood product transfusions and infusions during the care of
leukaemia
patients.
HAIRBEAR_UK
Founder Admin
in
CLL Support
3 years ago
Webinar 3.30pm Thursday 29th July - Use of blood products for the care of leukaemia patients
The aim of this webinar is to discuss the importance of blood product transfusions and infusions during the care of
leukaemia
patients.
The aim of this webinar is to discuss the importance of blood product transfusions and infusions during the care of
leukaemia
patients.
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Spot leukaemia early
You may or may not have seen the latest video on Facebook about this. I am one of those speaking. Hopefully here is the link https://fb.watch/7TzNrF-v7-/
You may or may not have seen the latest video on Facebook about this. I am one of those speaking. Hopefully here is the link https://fb.watch/7TzNrF-v7-/
kitchengardener2
in
Lung Conditions Community Forum
3 years ago
CD38 In CLL
Went for my annual checkup yesterday, WBC at 19.1 from 15.1 last year. Not enough WBC to know if mutated or not. The doctor did confirm I'm don't have 17p but I do have CD38.. according to Goggle I may see God sooner! What's the deal?
Went for my annual checkup yesterday, WBC at 19.1 from 15.1 last year. Not enough WBC to know if mutated or not. The doctor did confirm I'm don't have 17p but I do have CD38.. according to Goggle I may see God sooner! What's the deal?
Laura3mini
in
CLL Support
3 years ago
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