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Patient Empowerment Network New CLL Content March 2023
Dr. Michael Choi explains CLL patient trial opportunities and provides key questions to ask about clinical trial participation View Now >> https://powerfulpatients.org/2022/12/07/hesitant-to-participate-in-a-cll-clinical-trial-what-you-should-know/ - Developing CLL Research and Treatment News
Dr. Michael Choi explains CLL patient trial opportunities and provides key questions to ask about clinical trial participation View Now >> https://powerfulpatients.org/2022/12/07/hesitant-to-participate-in-a-cll-clinical-trial-what-you-should-know/ - Developing CLL Research and Treatment News
lankisterguy
Volunteer
in
CLL Support
1 year ago
myelofibrosis
hello anyone with mf,I'm not sure if I should start treatment a lot of people on here are on treatment. my platelets are normal, hb slightly low ,slightly enlarged spleen ,fatigue is main symptom. I'm on watch and wait but should I be on something to stop the mf progressing.
hello anyone with mf,I'm not sure if I should start treatment a lot of people on here are on treatment. my platelets are normal, hb slightly low ,slightly enlarged spleen ,fatigue is main symptom. I'm on watch and wait but should I be on something to stop the mf progressing.
glyndale
in
MPN Voice
1 year ago
Relapse/Refractory CLL
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
TeamDirtyBoots
in
CLL Support
1 year ago
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Your Role in Managing Your Care
leukemia
(CLL)?
leukemia
(CLL)?
lankisterguy
Volunteer
in
CLL Support
2 years ago
Chronic Lymphocytic Leukemia patient survey points to a need for better patient education
The interim report of an ongoing survey of CLL patients demonstrates that over 60% of respondents were unaware of different CLL risk groups and that about 20% felt they had "[i]not received enough information about CLL to make informed treatment decisions"[/i]. 14% of patients surveyed "[i]were unable
The interim report of an ongoing survey of CLL patients demonstrates that over 60% of respondents were unaware of different CLL risk groups and that about 20% felt they had "[i]not received enough information about CLL to make informed treatment decisions"[/i]. 14% of patients surveyed "[i]were unable
CLLerinOz
Administrator
in
CLL Support
2 years ago
Early Intervention for CLL
Testing Early Treatment for Patients with Chronic
Lymphocytic
Leukemia
(CLL) or Small
Lymphocytic
Lymphoma (SLL) https://www.swog.org/patients/trials-open-patients/testing-early-treatment-patients-chronic-
lymphocytic
-
leukemia
-cll-or
Testing Early Treatment for Patients with Chronic
Lymphocytic
Leukemia
(CLL) or Small
Lymphocytic
Lymphoma (SLL) https://www.swog.org/patients/trials-open-patients/testing-early-treatment-patients-chronic-
lymphocytic
-
leukemia
-cll-or
CLLnewbie
in
CLL Support
2 years ago
Real-world treatments and thrombotic events in polycythemia vera patients in the USA
»The majority of patients in both risk groups (60% of high-risk and 83% of low-risk) initiated treatment with phlebotomy monotherapy, and during a median follow-up period of 808 days, the vast majority (81% low-risk, 74% high-risk) maintained their original therapy during the follow-up period. Hematocrit
»The majority of patients in both risk groups (60% of high-risk and 83% of low-risk) initiated treatment with phlebotomy monotherapy, and during a median follow-up period of 808 days, the vast majority (81% low-risk, 74% high-risk) maintained their original therapy during the follow-up period. Hematocrit
Manouche
in
MPN Voice
2 years ago
Real world experience with Besremi in ET and PV following exposure to Pegasys.
Abstract Despite widespread use of Pegylated forms of Inteferon in the management of Myeloproliferative Neoplasms (MPN), most clinicians have experience predominantly with peginterferon alfa-2a (Pegasys). Third generation pegylated IFNα, ropeginterferon alfa-2b (ropegIFN; Besremi), was recommended
Abstract Despite widespread use of Pegylated forms of Inteferon in the management of Myeloproliferative Neoplasms (MPN), most clinicians have experience predominantly with peginterferon alfa-2a (Pegasys). Third generation pegylated IFNα, ropeginterferon alfa-2b (ropegIFN; Besremi), was recommended
Manouche
in
MPN Voice
2 years ago
A New Cell Therapy Trial for MF
Not sure if this has come up before. This company is focused on improving SCT for bone cancers with a new agent, Orca-T. https://orcabio.com/clinical-programs/ A phase 2 trial for MF had this result among others: "Regression of marrow fibrosis to MF grade 0 or 1 was noted by D+ 100 in 7 of 7 Orca-T
Not sure if this has come up before. This company is focused on improving SCT for bone cancers with a new agent, Orca-T. https://orcabio.com/clinical-programs/ A phase 2 trial for MF had this result among others: "Regression of marrow fibrosis to MF grade 0 or 1 was noted by D+ 100 in 7 of 7 Orca-T
EPguy
in
MPN Voice
2 years ago
Allele Burden (this is a different question - I PROMISE!!!)
3 years ago my blood was tested for Jak2. The report said: "My JAK2 mutation comprises > 60% of [u]
total JAK2
[/u], suggestive of a homozygous/hemizygous mutation. Patients with this type of mutation usually have more aggressive disease." I went on hydroxyurea in Dec 2021. My bloodwork was
3 years ago my blood was tested for Jak2. The report said: "My JAK2 mutation comprises > 60% of [u]
total JAK2
[/u], suggestive of a homozygous/hemizygous mutation. Patients with this type of mutation usually have more aggressive disease." I went on hydroxyurea in Dec 2021. My bloodwork was
ERei
in
MPN Voice
2 years ago
Chemotherapy for pv
Hi everyone, I am a 66 year old man and have suffered with polycythaemia vera for the past 7 years. Over the last year my bloods have been up and down and not very stable. Before Christmas it was suggested that I have a bone marrow biopsy and have just received the results. Apparently I have 7% leukaemia
Hi everyone, I am a 66 year old man and have suffered with polycythaemia vera for the past 7 years. Over the last year my bloods have been up and down and not very stable. Before Christmas it was suggested that I have a bone marrow biopsy and have just received the results. Apparently I have 7% leukaemia
Georgehb
in
MPN Voice
2 years ago
Zanubrutinib Bests Bendamustine-Rituximab in Previously Untreated CLL/SLL
More info here:https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/zanubrutinib-bests-bendamustine-rituximab-cll-sll-previously-untreated/
More info here:https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/zanubrutinib-bests-bendamustine-rituximab-cll-sll-previously-untreated/
Yalokin
in
CLL Support
2 years ago
CAR-T availability in Australia
can anyone enlighten me on the current status of CAR-T availability for CLL patients in Australia? I’m aware it wasn’t available for CLL after a small trial a couple of years ago but is being used for other types of Blood Cancers. Thank you :)
can anyone enlighten me on the current status of CAR-T availability for CLL patients in Australia? I’m aware it wasn’t available for CLL after a small trial a couple of years ago but is being used for other types of Blood Cancers. Thank you :)
Billarina
in
CLL Support
1 year ago
VACCINATIONS FOR PEOPLE WITH CHRONIC LYMPHOCYTIC LEUKEMIA (CLL/SLL)
[i]See https://healthunlocked.com/cllsupport/posts/148546478/vaccinations-for-people-with-chronic-
lymphocytic
-
leukemia
-cll-sll?
[i]See https://healthunlocked.com/cllsupport/posts/148546478/vaccinations-for-people-with-chronic-
lymphocytic
-
leukemia
-cll-sll?
CLLerinOz
Administrator
in
CLL Support
2 years ago
Zanubrutinib PFS, ORR Is Superior to Ibrutinib for Relapsed/Refractory CLL/SLL
Treatment with zanubrutinib (Brukinsa) reduced the risk of progression or death by 35% compared with ibrutinib (Imbruvica) for patients with relapsed or refractory chronic
lymphocytic
leukemia
(CLL) or small
lymphocytic
lymphoma (SLL), according to findings from the phase 3 ALPINE study (NCT03734016)
Treatment with zanubrutinib (Brukinsa) reduced the risk of progression or death by 35% compared with ibrutinib (Imbruvica) for patients with relapsed or refractory chronic
lymphocytic
leukemia
(CLL) or small
lymphocytic
lymphoma (SLL), according to findings from the phase 3 ALPINE study (NCT03734016)
lankisterguy
Volunteer
in
CLL Support
2 years ago
Happy New Year
The boarding of flight 2023 has been announced ....Your luggage should only contain three best souvenirs from 2022 .... The bad and sad moments should be left behind ..... The duration of the flight will be 12 months, with stops. So tighten your seat belt. The next stop overs will be: The Islands of
The boarding of flight 2023 has been announced ....Your luggage should only contain three best souvenirs from 2022 .... The bad and sad moments should be left behind ..... The duration of the flight will be 12 months, with stops. So tighten your seat belt. The next stop overs will be: The Islands of
kitchengardener2
in
CLL Support
2 years ago
Night shift work
Hello. I work evenings on a hospital nursing unit. I am scheduled to work one night every two weeks. I will remain on evenings and do this cross shift in order to cover the short staff on nights. I am on watch and wait, have stage two CLL with enlarged spleen and a large number of B-cell Lymphomas
Hello. I work evenings on a hospital nursing unit. I am scheduled to work one night every two weeks. I will remain on evenings and do this cross shift in order to cover the short staff on nights. I am on watch and wait, have stage two CLL with enlarged spleen and a large number of B-cell Lymphomas
Taza1
in
CLL Support
1 year ago
Fascinating: Development of Venetoclax
For a few years, I've taken a breather from HU while focusing on full life rather than my CLL. I'm stepping up to post a new podcast from Dana Farber Hospital, which I found fascinating. Particularly for those on Venetoclax, or considering the drug, I couldn't resist sharing it. The Season 2 Trailer
For a few years, I've taken a breather from HU while focusing on full life rather than my CLL. I'm stepping up to post a new podcast from Dana Farber Hospital, which I found fascinating. Particularly for those on Venetoclax, or considering the drug, I couldn't resist sharing it. The Season 2 Trailer
starsafta
in
CLL Support
1 year ago
Splenomegaly in Polycythemia Vera: Its Clinical Significance and its Relation to Symptoms
Background: Splenomegaly (SPML) in PV has been considered a diagnostic hallmark, associated with symptoms, affected clinical trial design, and influenced governmental approval of ropeginterferon α-2b. Whether SPML affects myelofibrosis-free and overall survival (MFS and OS) is unknown. Because of uncertainty
Background: Splenomegaly (SPML) in PV has been considered a diagnostic hallmark, associated with symptoms, affected clinical trial design, and influenced governmental approval of ropeginterferon α-2b. Whether SPML affects myelofibrosis-free and overall survival (MFS and OS) is unknown. Because of uncertainty
Manouche
in
MPN Voice
2 years ago
CLL Society interview - Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023
They discussed immune deficiency (a.k.a. being immunocompromised) and what that means for patients with chronic
lymphocytic
leukemia
(CLL) or small
lymphocytic
lymphoma (SLL). - What does it mean to be immune deficient or immunocompromised?
They discussed immune deficiency (a.k.a. being immunocompromised) and what that means for patients with chronic
lymphocytic
leukemia
(CLL) or small
lymphocytic
lymphoma (SLL). - What does it mean to be immune deficient or immunocompromised?
lankisterguy
Volunteer
in
CLL Support
2 years ago
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