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Pre-fibrotic MF
So I finally seen my Hemo, and the results show I've got Pre-fibrotic MF. Im JAK2 positive. So he would like to put me on ruxolitinib on my next visit. Approval is needed due to my age? I'm 36. My current symptoms are fevers, sweats, burning feet, blurred vision, no appetite, underweight sitting at 47kg
So I finally seen my Hemo, and the results show I've got Pre-fibrotic MF. Im JAK2 positive. So he would like to put me on ruxolitinib on my next visit. Approval is needed due to my age? I'm 36. My current symptoms are fevers, sweats, burning feet, blurred vision, no appetite, underweight sitting at 47kg
Kriddle01
in
MPN Voice
3 years ago
Is it common for CLL patients to undergo hematopoietic stem cell transplantation (HSCT) as treatment?
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
krikri1989ho
in
CLL Support
3 years ago
Antibody test
Received the NHS antibody test today. Just done the finger prick blood test and now have to wait ten to 15 minutes for the test results. The accompanying letter states that the test cannot be 100% accurate on an individual basis so if the lines appear on the test it does not mean that you have antibodies
Received the NHS antibody test today. Just done the finger prick blood test and now have to wait ten to 15 minutes for the test results. The accompanying letter states that the test cannot be 100% accurate on an individual basis so if the lines appear on the test it does not mean that you have antibodies
jillydabrat
in
MPN Voice
3 years ago
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CLL Research: Phase 2 CAPTIVATE Study Suggests Role for Fixed-Duration Treatment of CLL/SLL
https://cllpharmacist.com/cll-research-phase-2-captivate-study-suggests-role-for-fixed-duration-treatment-of-cll-sll/ The data in the uMRD cohort of this trial suggest that fixed-duration therapy is feasible in patients who achieve undetectable MRD (uMRD) status. The selection of durations for these
https://cllpharmacist.com/cll-research-phase-2-captivate-study-suggests-role-for-fixed-duration-treatment-of-cll-sll/ The data in the uMRD cohort of this trial suggest that fixed-duration therapy is feasible in patients who achieve undetectable MRD (uMRD) status. The selection of durations for these
WinJ3
in
CLL Support
3 years ago
Vaccine efficacy for COPD and immune compromised people
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
macnsyl
in
Lung Conditions Community Forum
3 years ago
Research to investigate how patients with MPN and also CML respond to vaccination against Covid-19
Researchers at Guy's and St Thomas' NHS Foundation Trust are carrying out research to investigate how patients with MPN and also CML respond to vaccination against Covid-19. They would like to recruit patients with a known MPN – who have either not yet received a second dose OR are less than 6 weeks
Researchers at Guy's and St Thomas' NHS Foundation Trust are carrying out research to investigate how patients with MPN and also CML respond to vaccination against Covid-19. They would like to recruit patients with a known MPN – who have either not yet received a second dose OR are less than 6 weeks
Mazcd
MPNVoice
in
MPN Voice
3 years ago
Hi, is it possible to still have PA even though my parietal cell and intrinsic factor antibody are negative and my b12 is low?
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Rocky213
in
Pernicious Anaemia Society
3 years ago
CLL + Trisomy 8?
Was diagnosed with CLL in 2018 at 45yrs old, started treatment in 2019 and just finished my 19th month of Obinituzamab, Venetoclax, and Ibrutinib trial. Had BMB and showed remaining small population of B-cells - dang! Also showed Trisomy 8? Seems very rare for CLL patient to have Trisomy 8. Oncologist
Was diagnosed with CLL in 2018 at 45yrs old, started treatment in 2019 and just finished my 19th month of Obinituzamab, Venetoclax, and Ibrutinib trial. Had BMB and showed remaining small population of B-cells - dang! Also showed Trisomy 8? Seems very rare for CLL patient to have Trisomy 8. Oncologist
RyStock
in
CLL Support
3 years ago
CLL Ireland and CLL Support First Joint Webinar
Our first joint webinar! 31 May 6.30 pm - 8.00 pm London (1.30 pm EST) We are very pleased to announce our first joint webinar with CLL Ireland. We are privileged to have as our keynote speakers Dr Brian Koffman, founder and principal of the CLL Society, and Professor Patrick Thornton, Consultant
Our first joint webinar! 31 May 6.30 pm - 8.00 pm London (1.30 pm EST) We are very pleased to announce our first joint webinar with CLL Ireland. We are privileged to have as our keynote speakers Dr Brian Koffman, founder and principal of the CLL Society, and Professor Patrick Thornton, Consultant
UK-Sparky
in
CLL Support
3 years ago
Continuation of Tocilizumab treatment in UK needed- Help or advice needed please.
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
Suzita76
in
PMRGCAuk
3 years ago
Last Call - Places available for today's UK CLL treatments update webinar
Date: Wednesday 5th May 2021 Time: 3:30pm BST Topic: CLL second-line and subsequent treatments Host: Leukaemia Care and Lymphoma Action This webinar will update on CLL second-line treatments today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement
Date: Wednesday 5th May 2021 Time: 3:30pm BST Topic: CLL second-line and subsequent treatments Host: Leukaemia Care and Lymphoma Action This webinar will update on CLL second-line treatments today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
FDA Plans to OK Pfizer Vaccine for Those Aged 12 and Up
The U.S. Food and Drug Administration plans to expand emergency use of Pfizer's coronavirus vaccine by next week so that children as young as 12 can be immunized. After Pfizer's trial in adolescents showed its vaccine worked as well in teens as it does in adults, the FDA started preparing to add an
The U.S. Food and Drug Administration plans to expand emergency use of Pfizer's coronavirus vaccine by next week so that children as young as 12 can be immunized. After Pfizer's trial in adolescents showed its vaccine worked as well in teens as it does in adults, the FDA started preparing to add an
2greys
in
Lung Conditions Community Forum
3 years ago
Recently diagnosed with MF
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
67Red
in
MPN Voice
3 years ago
Tocilizumab
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
AncientMariner
in
PMRGCAuk
3 years ago
A further update on the old taper journey ...
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
LemonZest11
in
PMRGCAuk
3 years ago
Travel Insurance with CLL (UK based)
I was diagnosed Stage 1 CLL in February. No treatment at present or planned. Any recommendations on travel insurance before I investigate further and declare to my existing insurer (free though my banking) or look elsewhere. Thanks.
I was diagnosed Stage 1 CLL in February. No treatment at present or planned. Any recommendations on travel insurance before I investigate further and declare to my existing insurer (free though my banking) or look elsewhere. Thanks.
Stretch47
in
CLL Support
3 years ago
Antibody results just said “yes,” not level
Last week I had an antibody test at my dermatologist’s (who has a vested interest in CLL) to see if my January and February Moderna jab produced antibodies. My impression was that this blood test would be “quantitative” rather than “qualitative,” meaning that it would at least give a general idea of
Last week I had an antibody test at my dermatologist’s (who has a vested interest in CLL) to see if my January and February Moderna jab produced antibodies. My impression was that this blood test would be “quantitative” rather than “qualitative,” meaning that it would at least give a general idea of
Myfavoritecat
in
CLL Support
3 years ago
A day of surprises
Hi all Yesterday I had the first face to face consultation since the pandemic. I must say I was wary of the reasons for this but went along anyway. The consultant reported that my blood tests results were unchanged and stable and the pegasys had reduced my spleen size by 0.7cm. He said that I am quite
Hi all Yesterday I had the first face to face consultation since the pandemic. I must say I was wary of the reasons for this but went along anyway. The consultant reported that my blood tests results were unchanged and stable and the pegasys had reduced my spleen size by 0.7cm. He said that I am quite
ConniesDad
in
MPN Voice
3 years ago
Should you be minimizing your consumption of lipids?
I had my worst blood test on April 15 followed three weeks later (on May 5) by my best blood test in 15 months. The main difference was that my April 15 blood test came after I had been eating lots of fatty foods during the week of Passover. My good test three weeks later came after I cut my fat and
I had my worst blood test on April 15 followed three weeks later (on May 5) by my best blood test in 15 months. The main difference was that my April 15 blood test came after I had been eating lots of fatty foods during the week of Passover. My good test three weeks later came after I cut my fat and
HowardR
in
CLL Support
3 years ago
Should FISH test be repeated?
Does anyone know if the FISH test is repeated for people with stage zero CLL? I had the test when I was first diagnosed in December 2017, and assume it hasn’t been repeated because my office exam with my hematologist this month didn’t reveal swollen lymph nodes or enlarged spleen.
Does anyone know if the FISH test is repeated for people with stage zero CLL? I had the test when I was first diagnosed in December 2017, and assume it hasn’t been repeated because my office exam with my hematologist this month didn’t reveal swollen lymph nodes or enlarged spleen.
Myfavoritecat
in
CLL Support
3 years ago
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