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Short Update on Ibrutinib + Idelalisib + Venetoclax "N of 1" trial after lower dose.
A update on my very surprising results when combining Ibrutinib + Idelalisib + Venetoclax. Initial Post with more detail: https://healthunlocked.com/cllsupport/posts/145327977/my-n-of-1-trial-with-ibrutinib-idelalisib-venetoclax-that-lead-to-remission-of-richters-in-three-weeks. I just had a second [
A update on my very surprising results when combining Ibrutinib + Idelalisib + Venetoclax. Initial Post with more detail: https://healthunlocked.com/cllsupport/posts/145327977/my-n-of-1-trial-with-ibrutinib-idelalisib-venetoclax-that-lead-to-remission-of-richters-in-three-weeks. I just had a second [
UniversallyPersonal
in
CLL Support
4 years ago
Quick Question to anyone previously shielding, over 70 and in Scotland
Hi all, It’s been a while since I’ve posted on the site but I’ve been keeping up to date with all your posts. I hope you’re all keeping safe and as well as you can. I have a question to anyone in their 70s who was/is officially shielding and lives in Scotland. Have you received your letter inviting
Hi all, It’s been a while since I’ve posted on the site but I’ve been keeping up to date with all your posts. I hope you’re all keeping safe and as well as you can. I have a question to anyone in their 70s who was/is officially shielding and lives in Scotland. Have you received your letter inviting
Froggie70
in
LUPUS UK
4 years ago
Richter's in Remission - 11 months post transplant
I've been away from HealthUnlocked for some time following my allogenic bone marrow transplant for Richter's Transformation 11 months ago at MDA Houston. I'm happy to report my transplant has been a success and I'm in complete remission from Richter's and I'm feeling great. I tolerated the transplant
I've been away from HealthUnlocked for some time following my allogenic bone marrow transplant for Richter's Transformation 11 months ago at MDA Houston. I'm happy to report my transplant has been a success and I'm in complete remission from Richter's and I'm feeling great. I tolerated the transplant
SarasotaPaul
in
CLL Support
4 years ago
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Living in the USA with CLL and want to know where to sign up for your COVID-19 Vaccination? A State-by-State List
From MedPage Today: [i]Every state has posted information on its plan; many (though not all) list ways to sign up. Here are links to each state's vaccination web page.[/i] https://www.medpagetoday.com/infectiousdisease/covid19/90791 CLL Society's Official Statement:
Should I get the vaccine? Which
From MedPage Today: [i]Every state has posted information on its plan; many (though not all) list ways to sign up. Here are links to each state's vaccination web page.[/i] https://www.medpagetoday.com/infectiousdisease/covid19/90791 CLL Society's Official Statement:
Should I get the vaccine? Which
AussieNeil
Partner
in
CLL Support
4 years ago
Help for after Meningitis
Hello friends! I wish all of you a healthy 2021! My name is Fredy, I was born in Peru, but for problems in my country I moved to the USA, now I live in New York. In 2012 I got meningitis, 2 weeks in comma, when I woke up from coma, my brain was gone, after that took me like 4 years to understand something
Hello friends! I wish all of you a healthy 2021! My name is Fredy, I was born in Peru, but for problems in my country I moved to the USA, now I live in New York. In 2012 I got meningitis, 2 weeks in comma, when I woke up from coma, my brain was gone, after that took me like 4 years to understand something
menin
in
Meningitis Now
4 years ago
Stem Cell Transplantation at Mass General
I have posted about this particular stem cell transplantation at least twice before. I understand that it was a "pay for play" situation. I understand that it is an "N of 1" situation. I understand that "placebo effect" could be a factor. I understand that much broader studies may be necessary. With
I have posted about this particular stem cell transplantation at least twice before. I understand that it was a "pay for play" situation. I understand that it is an "N of 1" situation. I understand that "placebo effect" could be a factor. I understand that much broader studies may be necessary. With
jimcaster
in
Cure Parkinson's
4 years ago
Tocilizumab patients and the COVID Vaccine
My Rheumatologist has let me know that it is fine for me to have the COVID Vaccine and to continue having my Tocilizumab injections. I am also on 10 mgs of Prednisalone. I have Giant Cell Arteritis/Large Vessel Vasculitis.
My Rheumatologist has let me know that it is fine for me to have the COVID Vaccine and to continue having my Tocilizumab injections. I am also on 10 mgs of Prednisalone. I have Giant Cell Arteritis/Large Vessel Vasculitis.
SheffieldJane
in
PMRGCAuk
4 years ago
Would love some advice
Hi. Firstly, I just want to say how grateful I am to have found this forum. It is invaluable and has answered some of my questions before I have even asked them - ie. blurry eyes etc. I would love some advice though if you can still put up with me. My consultant reduced my 40mg dose of prednisolone
Hi. Firstly, I just want to say how grateful I am to have found this forum. It is invaluable and has answered some of my questions before I have even asked them - ie. blurry eyes etc. I would love some advice though if you can still put up with me. My consultant reduced my 40mg dose of prednisolone
Sophiestree
in
PMRGCAuk
4 years ago
weird test results
my first test came back positive for gastric parietal cell antibodies using the Elisa test. Second test tests 5 years later for parietal cell antibody titers, comes back negative. Ok is this something that comes and goes?
my first test came back positive for gastric parietal cell antibodies using the Elisa test. Second test tests 5 years later for parietal cell antibody titers, comes back negative. Ok is this something that comes and goes?
BumbleBeeBumble
in
Pernicious Anaemia Society
4 years ago
New and first post might not be related.. please excuse me.
i had severe weight loss, and lot of symptoms in 2018, i went to specialist and got infections tests and all came back good.. but my CD8 cells are very less in the immunity test. after few months with continued symptoms i researched and found my symptoms are related to b12 deficiency and got tested and
i had severe weight loss, and lot of symptoms in 2018, i went to specialist and got infections tests and all came back good.. but my CD8 cells are very less in the immunity test. after few months with continued symptoms i researched and found my symptoms are related to b12 deficiency and got tested and
b12pas
in
Pernicious Anaemia Society
4 years ago
An interesting letter to the editor: Stem Cell Transplantation for Parkinson Disease: Déjà Vu All Over Again? ?
https://academic.oup.com/neurosurgery/advance-article/doi/10.1093/neuros/nyaa487/6027128
https://academic.oup.com/neurosurgery/advance-article/doi/10.1093/neuros/nyaa487/6027128
Farooqji
in
Cure Parkinson's
4 years ago
The road ahead
My oncologist called me yesterday and said they had found a donor match for a stem cell transplant and did I want to proceed? So a little of my story, I have been on IBRUTINUB for two years and am currently feel great as my lymphocyte count is 16.5 and neutrophils at 3.8. He said because of my higher
My oncologist called me yesterday and said they had found a donor match for a stem cell transplant and did I want to proceed? So a little of my story, I have been on IBRUTINUB for two years and am currently feel great as my lymphocyte count is 16.5 and neutrophils at 3.8. He said because of my higher
steve_canada
in
CLL Support
4 years ago
Is there any information yet on the COVID-19 vaccines for post Bone Marrow Transplant patients?
I had my transplant in 2014 and have seen a few articles about the way the vaccines interact with the immune system.
I had my transplant in 2014 and have seen a few articles about the way the vaccines interact with the immune system.
colinparker1967
in
MPN Voice
4 years ago
Gene SRSF2
I'm new here, but have private messaged Hunter who is an inspiration and interesting fact finder. I have MF progressed from PV last year but my recent visit to consultant showed a further 2 mutants. I'm Jak2 positive with SRSF2+1DH2. He has made a referral for Stem Cell Transplant. Is there anyone out
I'm new here, but have private messaged Hunter who is an inspiration and interesting fact finder. I have MF progressed from PV last year but my recent visit to consultant showed a further 2 mutants. I'm Jak2 positive with SRSF2+1DH2. He has made a referral for Stem Cell Transplant. Is there anyone out
ktaylor5563
in
MPN Voice
4 years ago
anti parietal cell antibody test For b12
anti parietal cell antibody test For b12 is it worth ?
anti parietal cell antibody test For b12 is it worth ?
Ulrich-vi
in
Pernicious Anaemia Society
4 years ago
Be alert of Secondary MDS
My father is successfully fighting prostate cancer since 3.5 yrs. His cemo (by pills) for 6 months then 40 radiations went well after testical removal. But his hemoglobin started to be low like 9 from 12. We asked doctor couple of times he just asked us to focus on PSA which is 0.01. But now my father
My father is successfully fighting prostate cancer since 3.5 yrs. His cemo (by pills) for 6 months then 40 radiations went well after testical removal. But his hemoglobin started to be low like 9 from 12. We asked doctor couple of times he just asked us to focus on PSA which is 0.01. But now my father
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
TPLL
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
Whatadayitwas
in
CLL Support
4 years ago
Life after transplant
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
KAS8
in
CLL Support
4 years ago
Occasional sore tongue
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
Karenjaninaz
in
PMRGCAuk
4 years ago
MDS and AML
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
sportydad
in
Leukaemia Support
4 years ago
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