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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
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
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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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
1 year 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
1 year 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
1 year 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
1 year 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
1 year 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
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
1 year ago
Research Evaluating Risk of Richter Syndrome
Apologies if this has been posted before, do feel free to delete and re-direct me if so. It is of particular interest to me because my recent experience suggests that the NHS does not test for complex karyotype CLL (using Chromosome Banding Analysis). I know only that I had an aggressive presentation
Apologies if this has been posted before, do feel free to delete and re-direct me if so. It is of particular interest to me because my recent experience suggests that the NHS does not test for complex karyotype CLL (using Chromosome Banding Analysis). I know only that I had an aggressive presentation
jonathan7176
in
CLL Support
1 year 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
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
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
Genomic testing and clinical decision making in CLL from the (European) ERIC 2022 Meeting
Genomic testing and clinical decision making in CLL- These videos are from European CLL experts intended for medical professionals and presented at or connected with the ERIC 2022 Meeting- using Med-Speak. https://www.vjhemonc.com/feature/the-importance-of-genomic-testing-in-cll/ Advances
Genomic testing and clinical decision making in CLL- These videos are from European CLL experts intended for medical professionals and presented at or connected with the ERIC 2022 Meeting- using Med-Speak. https://www.vjhemonc.com/feature/the-importance-of-genomic-testing-in-cll/ Advances
lankisterguy
Volunteer
in
CLL Support
1 year ago
Sample from ASH 2022, CALR antibody
Progress on the immune therapy we've discussed: "In a mouse model of essential thrombocythemia, INCA033989 selectively decreased levels of mutant CALR-positive platelets, re-established normal megakaryopoiesis, and selectively targeted mutant CALR disease-initiating clones. " https://www.cancertherapyadvisor.com
Progress on the immune therapy we've discussed: "In a mouse model of essential thrombocythemia, INCA033989 selectively decreased levels of mutant CALR-positive platelets, re-established normal megakaryopoiesis, and selectively targeted mutant CALR disease-initiating clones. " https://www.cancertherapyadvisor.com
EPguy
in
MPN Voice
2 years ago
Results on triple combination (A+V+O) for high risk patients -with-chronic-lymphocytic-leukemia-or-small-lymphocytic-lymphoma-cll
The Bottom Line: In this ongoing trial, the triple combination therapy using acalabrutinib, venetoclax, and obinutuzumab is highly active. Thus far this drug combination has produced durable remissions as a frontline treatment in patients with TP53 mutation CLL and has been generally well tolerated,
The Bottom Line: In this ongoing trial, the triple combination therapy using acalabrutinib, venetoclax, and obinutuzumab is highly active. Thus far this drug combination has produced durable remissions as a frontline treatment in patients with TP53 mutation CLL and has been generally well tolerated,
spi3
in
CLL Support
1 year ago
Places available today 3.30pm GMT - WEBINAR - UK employment rights
Hi everyone this afternoon Leukaemia Care and ACAS are providing an information webinar to inform blood cancer patients of employment rights. You are welcome to join us free here: https://us02web.zoom.us/webinar/register/WN_Jv6gP8ddSJ2Y7Jrs8S5u3Q
Start 3.30pm GMT
If you have been affected
Hi everyone this afternoon Leukaemia Care and ACAS are providing an information webinar to inform blood cancer patients of employment rights. You are welcome to join us free here: https://us02web.zoom.us/webinar/register/WN_Jv6gP8ddSJ2Y7Jrs8S5u3Q
Start 3.30pm GMT
If you have been affected
HAIRBEAR_UK
in
Leukaemia Support
2 years ago
Interesting article in the news ,NHL diagnosis for military personnel
[i] i thought this was a rather interesting article about the officers working at the Montana nuclear site getting Leukemia . here is a portion of the article ...maybe some of us are more susceptible to the radiation from our xrays and ct scans then others ... ----- "The US military is looking
[i] i thought this was a rather interesting article about the officers working at the Montana nuclear site getting Leukemia . here is a portion of the article ...maybe some of us are more susceptible to the radiation from our xrays and ct scans then others ... ----- "The US military is looking
craterlake
in
CLL Support
1 year ago
Astonishing' Results: Skip Salvage Chemo,Go Straight to HSCT
»NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
»NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
Manouche
in
MPN Voice
2 years ago
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