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CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials!
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials! While Dr. John Byrd is well known for his clinical trials that have brought ground-breaking drugs to CLL and other blood cancers, he is equally well respected for always PUTTING PATIENTS
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials! While Dr. John Byrd is well known for his clinical trials that have brought ground-breaking drugs to CLL and other blood cancers, he is equally well respected for always PUTTING PATIENTS
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
COVID risk to CLL patients with the reopening of schools
Hello all We are wondering if any other CLL patients are having the same issue or taking the same stand as we are here in Ireland. As some of you know my wife Jan was diagnosed in 2011 age 39 after 3 years very sick she was fortunate to get on an Ibrutinib trial in Leeds in 2014. Thankfully bloods
Hello all We are wondering if any other CLL patients are having the same issue or taking the same stand as we are here in Ireland. As some of you know my wife Jan was diagnosed in 2011 age 39 after 3 years very sick she was fortunate to get on an Ibrutinib trial in Leeds in 2014. Thankfully bloods
Irishcll
in
CLL Support
4 years ago
(Imbruvica), Ibrutinib, To live or to die
Hi, I have a 50-years old friend who has had CLL since 2013. He had a relapse in early 2020. When he was close to death, he was hospitalized to a private hospital in Turkey and was prescribed Imbruvica from Janssen company. Since he does not have insurance, he bought the medicine himself and spent almost
Hi, I have a 50-years old friend who has had CLL since 2013. He had a relapse in early 2020. When he was close to death, he was hospitalized to a private hospital in Turkey and was prescribed Imbruvica from Janssen company. Since he does not have insurance, he bought the medicine himself and spent almost
Green202
in
CLL Support
4 years ago
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Webinar - Living with the psychological impact of leukaemia and lymphoma in the COVID-19 era
From time to time CLL Support partner with other charities that share our aims and objectives and we are pleased to promote this webinar from Leukaemia Care and Lymphoma Action. It's their first ever joint webinar for those living with a lymphoma or leukaemia diagnosis. This webinar will explore the
From time to time CLL Support partner with other charities that share our aims and objectives and we are pleased to promote this webinar from Leukaemia Care and Lymphoma Action. It's their first ever joint webinar for those living with a lymphoma or leukaemia diagnosis. This webinar will explore the
Jm954
Administrator
in
CLL Support
4 years ago
Welcome
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
MFBMT2011
in
MPN Voice
4 years ago
Disease Flare During Temporary Interruption of Ibrutinib Therapy in Patients with Chronic Lymphocytic Leukemia ( CLL ) - Pseudo Richters
Several of us have reported our CLL symptoms have come roaring back after discontinuing Ibrutinib/imbruvica with even a few cases of what's been termed pseudo-Richters, where some patients appear to have even undergone unnecessary R-CHOP chemoimmunotherapy as our member Priss69 has reported:
Several of us have reported our CLL symptoms have come roaring back after discontinuing Ibrutinib/imbruvica with even a few cases of what's been termed pseudo-Richters, where some patients appear to have even undergone unnecessary R-CHOP chemoimmunotherapy as our member Priss69 has reported:
AussieNeil
Partner
in
CLL Support
4 years ago
Webinar - 4pm 27th August - Living with the psychological impact of leukaemia and lymphoma in the COVID-19 era
Good evening all, We are pleased to share information of this timely webinar. Please join us. Lymphoma Action is working with Leukaemia Care to host their first ever joint webinar that will explore the psychological impact of living with a lymphoma or leukaemia and discuss clinical care, support, coping
Good evening all, We are pleased to share information of this timely webinar. Please join us. Lymphoma Action is working with Leukaemia Care to host their first ever joint webinar that will explore the psychological impact of living with a lymphoma or leukaemia and discuss clinical care, support, coping
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
4 years ago
Resistance to Ibrutinib
Hi everyone this is my first post. I'm looking for some advice, reassurance please. I'm tp53 mutated and have been on ibrutinib 7 months, which is not working.I saw my consultant on Thursday and the plan is to continue for another 3 months to see if it starts working. My lymphocytes remain at 300. Has
Hi everyone this is my first post. I'm looking for some advice, reassurance please. I'm tp53 mutated and have been on ibrutinib 7 months, which is not working.I saw my consultant on Thursday and the plan is to continue for another 3 months to see if it starts working. My lymphocytes remain at 300. Has
Reddg
in
CLL Support
4 years ago
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
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
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
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
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
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
Partner
in
CLL Support
4 years ago
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