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Mantle cell lymphoma (MCL)
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Mycosis Fungoides
Hi. I haven’t posted in a while but wanted anyone’s opinion on being tested for mycosis Fungoides and if anyone had CLL plus this disease. It’s a cutaneous T cell lymphoma. I’ve had a rash that was there two years ago and and it goes away and comes back in different areas. No scaling, itchiness
Hi. I haven’t posted in a while but wanted anyone’s opinion on being tested for mycosis Fungoides and if anyone had CLL plus this disease. It’s a cutaneous T cell lymphoma. I’ve had a rash that was there two years ago and and it goes away and comes back in different areas. No scaling, itchiness
Madison1995
in
CLL Support
4 years ago
MDS
Doctors found out its MDS for my father, so they want to control it with medicines similar to cemo and then will decide after 4 months for bone marrow transplant. I am just wondering we had this problem of low hemoglobin since his radiation 2.5 years but still hemotologist never realised this is the
Doctors found out its MDS for my father, so they want to control it with medicines similar to cemo and then will decide after 4 months for bone marrow transplant. I am just wondering we had this problem of low hemoglobin since his radiation 2.5 years but still hemotologist never realised this is the
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
Anemia related to bone marrow
It's bone marrow problem as per doctors and test result, its been since radiation 3 yrs back and testicals removal, my father kept saying about hemoglobin declining but doctors never suggested bone marrow tests since then, it was gradually rising, it could have been easily cured. Now doctor said we got
It's bone marrow problem as per doctors and test result, its been since radiation 3 yrs back and testicals removal, my father kept saying about hemoglobin declining but doctors never suggested bone marrow tests since then, it was gradually rising, it could have been easily cured. Now doctor said we got
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
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Calquence Headaches and Low Blood Counts?
He was diagnosed with
Mantle
Cell
Lymphoma
in October 2019, he is 76 years old. He went through 5 months of chemotherapy (R-DHAP) and was deemed to be in remission from a PET scan.
He was diagnosed with
Mantle
Cell
Lymphoma
in October 2019, he is 76 years old. He went through 5 months of chemotherapy (R-DHAP) and was deemed to be in remission from a PET scan.
stonefilly
in
Non Hodgkin's Lymphoma Friends
4 years ago
Stem Cell Transplant
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
lebowski42
in
MPN Voice
4 years ago
ASCEND: Acalabrutinib Versus Idelalisib Plus Rituximab or Bendamustine Plus Rituximab in R/R CLL
Take home message is that Acalabrutinib significantly improved PFS and that Idelalisib Plus Rituximab treatment was associated with a high level of serious adverse events compared to the other treatments.
310 patients were randomly assigned to acalabrutinib monotherapy (n = 155) or investigator
Take home message is that Acalabrutinib significantly improved PFS and that Idelalisib Plus Rituximab treatment was associated with a high level of serious adverse events compared to the other treatments.
310 patients were randomly assigned to acalabrutinib monotherapy (n = 155) or investigator
Jm954
Administrator
in
CLL Support
4 years ago
An update on my tocilizumab experience.
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
LemonZest11
in
PMRGCAuk
4 years ago
Living with Chronic Neuropathic Pain
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
Hidden
in
Pain Concern
4 years ago
OVERCOMING GVHD AFTER ASCT
Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some of us here, (but hopefully not all...?), some may eventually have to travel down the path of having an Allogenic Stem Cell Transplant (ASCT), when and if it becomes necessary... ... If, and when that occurs, one of the known
Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some of us here, (but hopefully not all...?), some may eventually have to travel down the path of having an Allogenic Stem Cell Transplant (ASCT), when and if it becomes necessary... ... If, and when that occurs, one of the known
socrates_8
in
MPN Voice
4 years ago
Visit to haematologist today
Maybe he is thinking it could be
Mantle
Cell
Lymphoma
. I have lost a lot of weight unintentionally. Also night sweats , trouble eating . Any ideas anyone. Thanks Jan
Maybe he is thinking it could be
Mantle
Cell
Lymphoma
. I have lost a lot of weight unintentionally. Also night sweats , trouble eating . Any ideas anyone. Thanks Jan
JanEyre
in
CLL Support
4 years ago
Kate Gilbert’s book. Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
Seraphina56
in
PMRGCAuk
4 years ago
Why can't I be happy?!
I feel I need to apologise about my post before I even start, as I'm sure it will sound silly and ridiculous. My husband had a stem cell transplant in January after being diagnosed with all last year. His counts are all good so far, he feels well in himself. I've recently had to return to work, so back
I feel I need to apologise about my post before I even start, as I'm sure it will sound silly and ridiculous. My husband had a stem cell transplant in January after being diagnosed with all last year. His counts are all good so far, he feels well in himself. I've recently had to return to work, so back
Clarence45
in
Positive Wellbeing During Self-Isolation
4 years ago
PBC and stem cells
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
K-nirk
in
PBCers Organization
4 years ago
European Headache Federation recommendations for neurologists managing giant cell arteritis - 17 Mch 2020
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
Sefu
in
PMRGCAuk
4 years ago
Less than satisfactory telephone consultation
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Devoid
in
PMRGCAuk
4 years ago
Face masks - recommendations?
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
Clarence45
in
Positive Wellbeing During Self-Isolation
4 years ago
New to site
Hi my story starts 2 yrs ago when I was diagnosed with an aggressive leukaemia for which I needed a stem cell transplant to survive,a year after transplant it was found that my thyroid had stopped working due to effects of chemotherapy,not sure if damage is permanent but the last year has been nearly
Hi my story starts 2 yrs ago when I was diagnosed with an aggressive leukaemia for which I needed a stem cell transplant to survive,a year after transplant it was found that my thyroid had stopped working due to effects of chemotherapy,not sure if damage is permanent but the last year has been nearly
Bate
in
Thyroid UK
4 years ago
A JEDI WARRIOR's TALE
Post by MPN-MATE Admin » Sun Jun 21, 2020 10:52 am Morning everyone... :-) I am feeling quite chuffed and privileged today as we have just had someone that has always inspired my own MPN journey, (join us here at MATES), by penning his arduous account of what is was like to go through the whole process
Post by MPN-MATE Admin » Sun Jun 21, 2020 10:52 am Morning everyone... :-) I am feeling quite chuffed and privileged today as we have just had someone that has always inspired my own MPN journey, (join us here at MATES), by penning his arduous account of what is was like to go through the whole process
socrates_8
in
MPN Voice
4 years ago
Front-Runners Emerge in the Race for a Covid-19 Vaccine
Herd immunity via a vaccine that produces a good immune response is the best way forward for CLL and other immunocompromised patients all over the world. From WIRED Science Science 05.08.2020 Two leading candidates are headed for mass clinical trials, and everything’s on the table—including deliberately
Herd immunity via a vaccine that produces a good immune response is the best way forward for CLL and other immunocompromised patients all over the world. From WIRED Science Science 05.08.2020 Two leading candidates are headed for mass clinical trials, and everything’s on the table—including deliberately
Jm954
Administrator
in
CLL Support
4 years ago
Shielding updates and Q&A, webinars for each UK country are now opening for registration
Good morning friends With imminent announcements of changes to shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care and sister charities are working with specialist haematologists in each country to support you through changes.
Good morning friends With imminent announcements of changes to shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care and sister charities are working with specialist haematologists in each country to support you through changes.
HAIRBEAR_UK
Administrator
in
CLL Support
4 years ago
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