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UK Webinar - 3.30pm GMT 17th December - Making the best of your CLL medical appointments
Hi friends you may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here: https://us02web.zoom.us
Hi friends you may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here: https://us02web.zoom.us
HAIRBEAR_UK
Founder Admin
in
CLL Support
3 years ago
Rituxan
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
mkuhlman
in
CLL Support
3 years ago
Antibody test, optimal timing
hi from Poland I have been on Zanubrutinib (small molecule inhibitor of Bruton's tyrosine kinase) for three years. I had a moderna booster two weeks ago. I wonder after how long to do the antibody test. I called 5 different labs and they suggested doing a blood test over a period of two weeks to six
hi from Poland I have been on Zanubrutinib (small molecule inhibitor of Bruton's tyrosine kinase) for three years. I had a moderna booster two weeks ago. I wonder after how long to do the antibody test. I called 5 different labs and they suggested doing a blood test over a period of two weeks to six
BART4
in
CLL Support
3 years ago
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Abstract in regard to P-LL as a diagnosis entity is an interesting read and proposal
While there is no definitive decision, there is clinically-based validity to the suggestion. We have a few members who are diagnosed P-LL (P-LL is rarer than CLL, so numbers are few) who can relate to this as they are being treated much the same as we with CLL. https://mdanderson.elsevierpure.com
While there is no definitive decision, there is clinically-based validity to the suggestion. We have a few members who are diagnosed P-LL (P-LL is rarer than CLL, so numbers are few) who can relate to this as they are being treated much the same as we with CLL. https://mdanderson.elsevierpure.com
cllady01
Volunteer
in
CLL Support
3 years ago
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
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
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
Starting tocilizumab
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
Sharitone
in
PMRGCAuk
3 years ago
Join the Virus Watch project ( in the UK)
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Suzita76
in
PMRGCAuk
3 years ago
Does anyone know whether I will experience steroid withdrawal even though I’m on tocilizumab?
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
Erikaknitssocks
in
PMRGCAuk
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
"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
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
Tocilizumab cessation.
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
AncientMariner
in
PMRGCAuk
3 years ago
Stopping Tocilizumab
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
AncientMariner
in
PMRGCAuk
3 years ago
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