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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
Today is World Leukemia Day
Dear friends Today, patients, patient groups, clinical groups and organisations across the world are uniting to raise awareness of leukaemia. By publicising the signs and symptoms we are working together to help leukaemia patients get diagnosed and provide better outcomes for them. You can make
Dear friends Today, patients, patient groups, clinical groups and organisations across the world are uniting to raise awareness of leukaemia. By publicising the signs and symptoms we are working together to help leukaemia patients get diagnosed and provide better outcomes for them. You can make
HAIRBEAR_UK
Administrator
in
CLL Support
4 years ago
Newly diagnosed and hoping for a bit of advice
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Pdaquinas
in
CLL Support
4 years ago
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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
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
Atypical cases of necrotizing sweet syndrome in patients with myelodysplastic syndrome and acute myeloid leukaemia
In approx. 15-20% of SWEET'S SYNDROME patients, their condition can be triggered by CANCER, one of the commonest being myelodyplastic syndromes which can progress to
acute
myeloid
leukaemia
.
In approx. 15-20% of SWEET'S SYNDROME patients, their condition can be triggered by CANCER, one of the commonest being myelodyplastic syndromes which can progress to
acute
myeloid
leukaemia
.
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
4 years ago
Ibrutinib plus fludarabine, cyclophosphamide, and rituximab as initial treatment for younger patients with CLL
This is an abstract from the Lancet article. There's a fair bit of detail missing regarding the profile of the CLL patients in terms of IgHV mutation status etc and the follow up is still very short but they are claiming that this is the best response ever published in patients with CLL unrestricted
This is an abstract from the Lancet article. There's a fair bit of detail missing regarding the profile of the CLL patients in terms of IgHV mutation status etc and the follow up is still very short but they are claiming that this is the best response ever published in patients with CLL unrestricted
Jm954
Administrator
in
CLL Support
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
Aussies, please consider enrolling in this study into the personal impact of CLL and help our world wide CLL/SLL community
Australians diagnosed with chronic lymphocytic leukaemia/small lymphocytic lymphoma (CLL/SLL), whether in watch and wait or in treatment:- [i]- Are you ready to have your say on the support, care & information patients need? - Are you ready for your experience to help others in the future? - Are you
Australians diagnosed with chronic lymphocytic leukaemia/small lymphocytic lymphoma (CLL/SLL), whether in watch and wait or in treatment:- [i]- Are you ready to have your say on the support, care & information patients need? - Are you ready for your experience to help others in the future? - Are you
AussieNeil
Administrator
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
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
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
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
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