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Mantle cell lymphoma (MCL)
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Sodium / potassium
Sodium intake . Hi a question regarding sodium intake and potassium .I’m on pred 15 mg - I have noticed the days I am not paying attention to diet ( most days Im Good !) but if I eat anything salty !! - ie crisps / chips with salt etc then my fluid balance seems to go completely out of whack - my eyes
Sodium intake . Hi a question regarding sodium intake and potassium .I’m on pred 15 mg - I have noticed the days I am not paying attention to diet ( most days Im Good !) but if I eat anything salty !! - ie crisps / chips with salt etc then my fluid balance seems to go completely out of whack - my eyes
Ballywilliam
in
PMRGCAuk
3 years ago
Clinical trial for waldenstrom
I started a clinical trial of two oral meds this week: ibrutinib and venetoclax. Dana farber is running the 50 person trial. They’re powerful, targeted meds to knock down the cancer. I was diagnosed last feb as I turned 70 and moved quickly from watch and wait to treatment based on blood tests not symptoms
I started a clinical trial of two oral meds this week: ibrutinib and venetoclax. Dana farber is running the 50 person trial. They’re powerful, targeted meds to knock down the cancer. I was diagnosed last feb as I turned 70 and moved quickly from watch and wait to treatment based on blood tests not symptoms
waer88
in
CLL Support
3 years ago
Captivate Trial MRD status
I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 2019....Ibrutinib for 12 months and Venetoclax for 9. I just received several test results including Flow Citometry and I am still MRD negative after 2 years. This trial was simply awesome and a life saver. I was originally
I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 2019....Ibrutinib for 12 months and Venetoclax for 9. I just received several test results including Flow Citometry and I am still MRD negative after 2 years. This trial was simply awesome and a life saver. I was originally
lamboman
in
CLL Support
3 years ago
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Tocilizumab treatment?
A friend of mine recently suggested that I try the monoclonal antibody tocilizumab as a treatment for my PMR. My questions are as follows: Has tocilizumab brought anyone into remission and for how long? On balance, is treatment with tocilizumab preferable to the prednisone that I'm taking now? What is
A friend of mine recently suggested that I try the monoclonal antibody tocilizumab as a treatment for my PMR. My questions are as follows: Has tocilizumab brought anyone into remission and for how long? On balance, is treatment with tocilizumab preferable to the prednisone that I'm taking now? What is
Ozark
in
PMRGCAuk
3 years ago
Is humira safe to take? Re potential lymphoma and leukemia?
Hi all. I am very new to this platform but so grateful to have a place to ask some difficult questions to people who may understand. I have just started humira after reacting badly to mabthera. I have also previously been on methotrexate, azaoress, nivaquin abd high dose steroids to name a few. I have
Hi all. I am very new to this platform but so grateful to have a place to ask some difficult questions to people who may understand. I have just started humira after reacting badly to mabthera. I have also previously been on methotrexate, azaoress, nivaquin abd high dose steroids to name a few. I have
lee2021
in
LUPUS UK
3 years ago
Roactemra Tocilizumab - lab out of stock - advice needed please.
Some of you may remember that I am taking Tocilizumab injections (only) regularly for GCA. Not long ago, others in my situation wrote saying that they had been warned that it was going to run out for a while due to the same drug being used world wide for covid patients. This has happened here in France
Some of you may remember that I am taking Tocilizumab injections (only) regularly for GCA. Not long ago, others in my situation wrote saying that they had been warned that it was going to run out for a while due to the same drug being used world wide for covid patients. This has happened here in France
Frenchduck
in
PMRGCAuk
3 years ago
First Stem Cell Transplant Appointment done
Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today. To my great relief, the consultant was extremely approachable and excellent at explaining things. I didn't ask all of my questions as these initial discussions are being done over
Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today. To my great relief, the consultant was extremely approachable and excellent at explaining things. I didn't ask all of my questions as these initial discussions are being done over
Otterfield
in
MPN Voice
3 years ago
Study shows low or undetectable immune response to double COVID-19 vaccination in patients with impaired immune systems
The first data from the ongoing OCTAVE (Observational Cohort Trial-T-cells Antibodies and Vaccine Efficacy in SARS-CoV-2) study show that a significant proportion of clinically at-risk patients with certain immunocompromised or immunosuppressed conditions mount a low or undetectable immune response after
The first data from the ongoing OCTAVE (Observational Cohort Trial-T-cells Antibodies and Vaccine Efficacy in SARS-CoV-2) study show that a significant proportion of clinically at-risk patients with certain immunocompromised or immunosuppressed conditions mount a low or undetectable immune response after
2greys
in
Lung Conditions Community Forum
3 years ago
Lymphoma Questions
Hi All, Sorry to post on such a crappy topic. So this study came out and it kind of scared me a bit as I have a focus score of 8 from my biopsy at diagnosis which is quite high. The study is here: https://www.sciencedirect.com/science/article/abs/pii/S0896841121000561 It seems to suggest that the higher
Hi All, Sorry to post on such a crappy topic. So this study came out and it kind of scared me a bit as I have a focus score of 8 from my biopsy at diagnosis which is quite high. The study is here: https://www.sciencedirect.com/science/article/abs/pii/S0896841121000561 It seems to suggest that the higher
Insomniacette
in
LUPUS UK
3 years ago
First Appointment re Stem Cell Transplant
This week I have my first appointment with a stem cell transplant specialist. I haven't made up my mind yet and I'm seeing this as a fact finding appointment. I've made a list of questions to ask: What exactly does it involve, step by step? What can go wrong? And if something goes wrong, what is the
This week I have my first appointment with a stem cell transplant specialist. I haven't made up my mind yet and I'm seeing this as a fact finding appointment. I've made a list of questions to ask: What exactly does it involve, step by step? What can go wrong? And if something goes wrong, what is the
Otterfield
in
MPN Voice
3 years ago
Who should receive a 3rd COVID-19 dose according to the CDC
I just received this email from Tufts Medical Center in Boston, Massachusetts and it's another confirmation as to who is really immunocompromised. I hope this helps some members of this forum who are on higher doses of Pred. "Patient Update - Dear Tufts Medical Center and Tufts Children’s Hospital Community
I just received this email from Tufts Medical Center in Boston, Massachusetts and it's another confirmation as to who is really immunocompromised. I hope this helps some members of this forum who are on higher doses of Pred. "Patient Update - Dear Tufts Medical Center and Tufts Children’s Hospital Community
kulina
in
PMRGCAuk
3 years ago
I have had both doses of the Pfizer vaccine, while they applauded me after I got my 2nd dose, 90 days later I found that I have no immunity!
I took Ibrutinib prior to January 20 when it gave me AFib and a few other problems, then stated Venetoclax in July of 2020, and in August started the first of six doses of Rituxan. It would seem that Rituxan is the main culprit, as in my research I found that no immunity was created in cases which
I took Ibrutinib prior to January 20 when it gave me AFib and a few other problems, then stated Venetoclax in July of 2020, and in August started the first of six doses of Rituxan. It would seem that Rituxan is the main culprit, as in my research I found that no immunity was created in cases which
KevinCLLITP
in
CLL Support
3 years ago
B12 Testing
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
Pain12345
in
Pernicious Anaemia Society
3 years ago
Shingrix OK For Immunocompromised Adults
This article was posted today on CLLSLL groups.io and is reposted here with permission from Dr. Furman https://groups.io/g/CLLSLL/message/31608?reply=1 [i] Re: Shingrix OK For Immunocompromised Adults [/i] [i]From: Rick Furman Date: Fri, 30 Jul 2021 08:43:32 EDT[/i] [i]-[/i] [i]Shingles is the result
This article was posted today on CLLSLL groups.io and is reposted here with permission from Dr. Furman https://groups.io/g/CLLSLL/message/31608?reply=1 [i] Re: Shingrix OK For Immunocompromised Adults [/i] [i]From: Rick Furman Date: Fri, 30 Jul 2021 08:43:32 EDT[/i] [i]-[/i] [i]Shingles is the result
lankisterguy
Volunteer
in
CLL Support
3 years ago
Tocilizumab treatment extension, and latest PET-CT scan results
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Suzita76
in
PMRGCAuk
3 years ago
Newbie
Hi everyone, just found this site through the NHS app. Had cancer twice, had chemo plus stem cell transplant. I've been left with knee problems due to Lymphoma and have to use a stroller and wheelchair. The treatment I've had has led to a deep depression and anxiety as I no longer have my independence
Hi everyone, just found this site through the NHS app. Had cancer twice, had chemo plus stem cell transplant. I've been left with knee problems due to Lymphoma and have to use a stroller and wheelchair. The treatment I've had has led to a deep depression and anxiety as I no longer have my independence
Akita1963
in
Anxiety and Depression Support
3 years ago
Calling UK tocilizumab or epipen users: How do you dispose of your self-injector? Who arranges it?
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
PMRpro
Ambassador
in
PMRGCAuk
3 years ago
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets?
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Yamaha1871
in
ITP Support Association
3 years ago
More on HELP #3 Day in Hospital Possible Giant Cell Arteritis Biopsy Tomorrow. San Antonio Rose
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
SARose
in
PMRGCAuk
3 years ago
Another HSCT question….
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
krikri1989ho
in
CLL Support
3 years ago
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