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Mast cell leukaemia
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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
Red face / flushing. Possible rosacea
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Kraskie1915
in
CLL Support
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
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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
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
Update on my previous post trapped nerve and PMR.
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
Washingup
in
PMRGCAuk
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
Allogenic Stem Cell Transplant
I [i]received a Stem cell transplant six months ago. My decision was based on the availability of a suitable donor and being able to get to remission through aggressive chemotherapy. Other treatments had no effect on my rapidly growing leukemia. As of today I’m still in remission, showing 97% chimerism
I [i]received a Stem cell transplant six months ago. My decision was based on the availability of a suitable donor and being able to get to remission through aggressive chemotherapy. Other treatments had no effect on my rapidly growing leukemia. As of today I’m still in remission, showing 97% chimerism
GarciaB
in
MPN Voice
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
FDA Approves Cell Therapy for Patients with Blood Cancers to Reduce Risk of Infection Following Stem Cell Transplantation- Released 4/17/23
Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidubicel-onlv), a substantially modified allogeneic (donor) cord blood-based cell therapy to quicken the recovery of neutrophils (a subset of white blood cells) in the body and reduce the risk of infection. The product is intended
Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidubicel-onlv), a substantially modified allogeneic (donor) cord blood-based cell therapy to quicken the recovery of neutrophils (a subset of white blood cells) in the body and reduce the risk of infection. The product is intended
PhysAssist
in
MPN Voice
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
Hi, im new here
Hi, im really wondering if i have developed fibromyalgia. I have recently recovered from treatment for blood cancer by having a stem cell transplant (14 months ago) im struggling to return to work full time, im suffering everyday with pain ,fatigue, weakness, dizziness, brain fog, sometimes my skin
Hi, im really wondering if i have developed fibromyalgia. I have recently recovered from treatment for blood cancer by having a stem cell transplant (14 months ago) im struggling to return to work full time, im suffering everyday with pain ,fatigue, weakness, dizziness, brain fog, sometimes my skin
Marchhare7
in
Fibromyalgia Action UK
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
billionaires
i dot know how many of you heard the " Doc vs Parkinson's" story A doctor who paid almost 20 million dollars to get a stem cell transplant of brain about 3 years ago. He had PD for 15 years and now his symptoms are reversing. Are people with money, power and PD are getting efficient treatment and
i dot know how many of you heard the " Doc vs Parkinson's" story A doctor who paid almost 20 million dollars to get a stem cell transplant of brain about 3 years ago. He had PD for 15 years and now his symptoms are reversing. Are people with money, power and PD are getting efficient treatment and
Rupa88
in
Cure Parkinson's
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
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