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CLL Treatments Today: What Should I Know? October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time
https://mailchi.mp/patientpower.info/your-patient-powered-cll-news-1299504?e=8acc3ddacd Saturday, October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time This 3-hour program will take you through a CLL 101, 201 and 301 class hosted by CLL patient advocates and experts from Cleveland Clinic and
https://mailchi.mp/patientpower.info/your-patient-powered-cll-news-1299504?e=8acc3ddacd Saturday, October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time This 3-hour program will take you through a CLL 101, 201 and 301 class hosted by CLL patient advocates and experts from Cleveland Clinic and
lankisterguy
Volunteer
in
CLL 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
Administrator
in
Leukaemia CARE
4 years ago
High red and white blood cells
My gp has mentioned
leukaemia
as a possible cause and also PV, i'm petrified, i'm still waiting on the JAK 2 gene test but I cant function at the moment with stress and worry, has anyone had this that can maybe tell me a little bit more about it.
My gp has mentioned
leukaemia
as a possible cause and also PV, i'm petrified, i'm still waiting on the JAK 2 gene test but I cant function at the moment with stress and worry, has anyone had this that can maybe tell me a little bit more about it.
nicky153
in
MPN Voice
4 years ago
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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
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
Administrator
in
Leukaemia CARE
4 years ago
Anyone have experience with Venclexta capped at 200 mg?
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
Flute117
in
CLL Support
4 years ago
MDS?
Originally diagnosed w ET. Was on HU and then taken off after 18 mos due to anemia. Platelets have remained low normal but HCT have continued to drop. Anemia not iron related. Now Dr has mentioned BMB for MDS or post ET MF? What the h**? Is MDS still a MPN? Seems like opposite?
Originally diagnosed w ET. Was on HU and then taken off after 18 mos due to anemia. Platelets have remained low normal but HCT have continued to drop. Anemia not iron related. Now Dr has mentioned BMB for MDS or post ET MF? What the h**? Is MDS still a MPN? Seems like opposite?
Kerri2
in
MPN Voice
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
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
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
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
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
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
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
Administrator
in
Leukaemia CARE
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
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
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