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Webinar - Navigating changes as shielding pauses - August 4th at 2.30PM
As broad shielding guidance is paused for the group of clinically vulnerable patients across the UK,
Leukaemia
Care are hosting this webinar with leading haematologists from different specialisms to aid patients and their families into next steps.
As broad shielding guidance is paused for the group of clinically vulnerable patients across the UK,
Leukaemia
Care are hosting this webinar with leading haematologists from different specialisms to aid patients and their families into next steps.
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Shielding updates and Q&A, the webinars for each UK country are now opening for registration
Join us and the experts for:
đź”´ England
leukaemia
patients' shielding update and Q&A on 22nd June, 10:30am.
Join us and the experts for:
đź”´ England
leukaemia
patients' shielding update and Q&A on 22nd June, 10:30am.
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Shielding updates and Q&A, webinars for each UK country are now opening for registration
Join us and the experts for: đź”´ England
leukaemia
patients' shielding update and Q&A on 22nd June, 10:30am.
Join us and the experts for: đź”´ England
leukaemia
patients' shielding update and Q&A on 22nd June, 10:30am.
HAIRBEAR_UK
Administrator
in
CLL Support
4 years ago
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CLL with CAD
CLL with Cold Agglutinin Disease New to the group, 72 yr old male, served in Vietnam from 1967 to 1970 Diagnosed in Feb 2020 Would like to hear from anyone CLL and CAD (Cold Agglutinin Disease)
CLL with Cold Agglutinin Disease New to the group, 72 yr old male, served in Vietnam from 1967 to 1970 Diagnosed in Feb 2020 Would like to hear from anyone CLL and CAD (Cold Agglutinin Disease)
Hidden
in
CLL Support
4 years ago
COVID risk to CLL Patients with the reopening of schools in Ireland
I think it was the first time ever that the words Chronic Lymphocytic
Leukaemia
was used in our parliament.
I think it was the first time ever that the words Chronic Lymphocytic
Leukaemia
was used in our parliament.
Irishcll
in
CLL Ireland
4 years ago
Webinar on CLL treatment - a Changing Landscape
CLL treatment - a changing landscape
When: Jun 29, 2020 11:00 AM You are invited to join us for a webinar by our sister charity
Leukaemia
Care on chronic lymphocytic
leukaemia
(CLL) treatment.
CLL treatment - a changing landscape
When: Jun 29, 2020 11:00 AM You are invited to join us for a webinar by our sister charity
Leukaemia
Care on chronic lymphocytic
leukaemia
(CLL) treatment.
Jm954
Administrator
in
CLL Support
4 years ago
Stem Cell Transplant
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
lebowski42
in
MPN Voice
4 years ago
Cytogenetics showed dup(1q)
Have just received a copy of the last phone consultation under diagnosis: polycythemia vera 1997 JAK2 V617F positive/Post polycythemia myelofibrosis 2019, came this it wasn't mentioned in the call. Cytogenetics showed dup(1q) anyone know what it means as my next phone consultant is not till the end of
Have just received a copy of the last phone consultation under diagnosis: polycythemia vera 1997 JAK2 V617F positive/Post polycythemia myelofibrosis 2019, came this it wasn't mentioned in the call. Cytogenetics showed dup(1q) anyone know what it means as my next phone consultant is not till the end of
Kabuki
in
MPN Voice
4 years ago
NIGHT SWEATS
I would appreciate input from members on Night Sweats. Although I am a little over two years in W&W, and I understand very well the symptoms my Hematologist/Oncologist will look for regarding triggers for treatment (RBC count, Platelet Count, increased infections, and Night Sweats) I am uncertain if
I would appreciate input from members on Night Sweats. Although I am a little over two years in W&W, and I understand very well the symptoms my Hematologist/Oncologist will look for regarding triggers for treatment (RBC count, Platelet Count, increased infections, and Night Sweats) I am uncertain if
wizzard166
in
CLL Support
4 years ago
Towards personalised management of CLL? Ibrutinib study reveals new way to gauge patients’ response to treatment
Excerpts from https://www.genengnews.com/topics/omics/cll-drug-study-finds-single-cell-analysis-can-gauge-response-rate/ *** Ibrutinib, a Bruton tyrosine kinase (BTK) inhibitor, has remarkable efficacy in most patients with CLL. It is becoming the standard of care for most patients requiring treatment
Excerpts from https://www.genengnews.com/topics/omics/cll-drug-study-finds-single-cell-analysis-can-gauge-response-rate/ *** Ibrutinib, a Bruton tyrosine kinase (BTK) inhibitor, has remarkable efficacy in most patients with CLL. It is becoming the standard of care for most patients requiring treatment
bennevisplace
in
CLL Support
4 years ago
UK CLL Forum - updated post lockdown guidance for the management of CLL
During the height of the COVID19 pandemic the UK CLL Forum issued guidance on managing CLL patients. This guidance has now been updated with post lockdown guidance. Many of us will be disappointed to see that the first point is to continue to 'consider telephone or video conference appointments if feasible
During the height of the COVID19 pandemic the UK CLL Forum issued guidance on managing CLL patients. This guidance has now been updated with post lockdown guidance. Many of us will be disappointed to see that the first point is to continue to 'consider telephone or video conference appointments if feasible
Jm954
Administrator
in
CLL Support
4 years ago
How to tell young children
Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38). We have a 3.5yrs son, and I was wondering if anyone has any tips how to approach the subject with him. He knows things are not right at home, and
Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38). We have a 3.5yrs son, and I was wondering if anyone has any tips how to approach the subject with him. He knows things are not right at home, and
Savage27
in
CLL Support
4 years ago
Study on Covid for people with CLL
https://www.ajmc.com/newsroom/age-recent-treatment-appear-to-influence-severity-of-covid19-in-patients-with-cll It seems the good news is that the medicines taken to fight off
leukaemia
in some cases help fight off COVID too.
https://www.ajmc.com/newsroom/age-recent-treatment-appear-to-influence-severity-of-covid19-in-patients-with-cll It seems the good news is that the medicines taken to fight off
leukaemia
in some cases help fight off COVID too.
Research123
in
CLL Support
4 years ago
SF3B1 Mutations
We've had a couple of members mention that they are positive for SF3B1 Mutations so I thought it would be worth a short simplified post about it. SF3B1 are predominantly sub clonal genetic events in CLL and are not unique to CLL as they are also found in other haematological disease such as myelodysplastic
We've had a couple of members mention that they are positive for SF3B1 Mutations so I thought it would be worth a short simplified post about it. SF3B1 are predominantly sub clonal genetic events in CLL and are not unique to CLL as they are also found in other haematological disease such as myelodysplastic
Jm954
Administrator
in
CLL Support
4 years ago
Anyone know of links between MPN’s and working on military radars?
Hi, I got diagnosed in April this year with ET with Jak2 mutation. Up until the discovery I was fit and healthy. I understood that MPN’s were rare and weren’t related to lifestyle choices. But I had a sudden moment of “what if” whilst at work today. I’ve served over 14 years in the RAF as a comms
Hi, I got diagnosed in April this year with ET with Jak2 mutation. Up until the discovery I was fit and healthy. I understood that MPN’s were rare and weren’t related to lifestyle choices. But I had a sudden moment of “what if” whilst at work today. I’ve served over 14 years in the RAF as a comms
MadamCholet1
in
MPN Voice
4 years ago
FCR oral versus iv
Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral formulation avoids need to attend hospital more frequently for infusions too. Is there anything else I should consider if needing tx with FCR? Thanks
Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral formulation avoids need to attend hospital more frequently for infusions too. Is there anything else I should consider if needing tx with FCR? Thanks
CarpeDiem03
in
CLL Support
4 years ago
Worried About Your CLL? A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! (Applies to USA Residents only)
https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program ( Unfortunately this is available to USA Residents only - Sorry) - 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
https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program ( Unfortunately this is available to USA Residents only - Sorry) - 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
lankisterguy
Volunteer
in
CLL Support
4 years ago
On the possible use of mushrooms and natural supplements, and their potential benefits, with citations
The following post provides information and NON-MEDICAL advice I've come across that I'll be presenting to my oncologist tomorrow. I thought it might be of value for others among us to consider, to further research (I provide citations), to comment on, and/or to speak to their doctor(s) and oncologist
The following post provides information and NON-MEDICAL advice I've come across that I'll be presenting to my oncologist tomorrow. I thought it might be of value for others among us to consider, to further research (I provide citations), to comment on, and/or to speak to their doctor(s) and oncologist
Pogee
in
CLL Support
4 years ago
Webinar - CLL treatment a changing landscape
When: Jun 29, 2020 11:00AM We invite you to Join us for an upcoming webinar on chronic lymphocytic
leukaemia
(CLL) treatment.
When: Jun 29, 2020 11:00AM We invite you to Join us for an upcoming webinar on chronic lymphocytic
leukaemia
(CLL) treatment.
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Haematocrit
Hi all I haven't posted for a while but am interested how many have a high red blood count (HCT) when diagnosed with ET or MF Thanks in advance Graham
Hi all I haven't posted for a while but am interested how many have a high red blood count (HCT) when diagnosed with ET or MF Thanks in advance Graham
Graham7694
in
MPN Voice
4 years ago
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