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Transplant coming soon!
I have been fighting cll/stage 4 for seven years with little success. Have had all standard chemo and have been in two clinical trials (ibrutnib and ABT199). The ibrutnib worked great for about a year and a half. When it failed it was fast! Then I tried ABT199 which helped save my life, but was short
I have been fighting cll/stage 4 for seven years with little success. Have had all standard chemo and have been in two clinical trials (ibrutnib and ABT199). The ibrutnib worked great for about a year and a half. When it failed it was fast! Then I tried ABT199 which helped save my life, but was short
Hidden
in
CLL Support
9 years ago
Stem cell transplants
This was on the ACOR list today. I found it fascinating. Jeff "Date: Thu, 11 Jun 2015 06:51:53 -0500 From: Dennis Pinkard <pinkardd@CHARTER.NET> Subject: Researchers identify patients at risk for stem cell transplant complications Phase 2 clinical trial. http://www.sciencedaily.com/releases
This was on the ACOR list today. I found it fascinating. Jeff "Date: Thu, 11 Jun 2015 06:51:53 -0500 From: Dennis Pinkard <pinkardd@CHARTER.NET> Subject: Researchers identify patients at risk for stem cell transplant complications Phase 2 clinical trial. http://www.sciencedaily.com/releases
Justasheet1
in
CLL Support
9 years ago
Going off Ibrutinib: should we be worried?
Hi everyone. My husband was due to go in for a stem cell transplant this week but it has been delayed as he wasn't well on the day. Due to a theatre being unavailable for the donor (for taking cells from bone marrow), it's been put back two weeks. This means my husband will now be off Ibrutinib for
Hi everyone. My husband was due to go in for a stem cell transplant this week but it has been delayed as he wasn't well on the day. Due to a theatre being unavailable for the donor (for taking cells from bone marrow), it's been put back two weeks. This means my husband will now be off Ibrutinib for
MJN44
in
CLL Support
9 years ago
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Multi myeloma patient diagnosed in 2013, had stem cell transplant April 2014 but told relapsed November 2014. Started Revlamid / dexamethazone January 2015, so far despite some side effects going in the right direction but so was transplant so fingers still crossed.
Multi myeloma patient diagnosed in 2013, had stem cell transplant April 2014 but told relapsed November 2014. Started Revlamid / dexamethazone January 2015, so far despite some side effects going in the right direction but so was transplant so fingers still crossed.
Keith18
in
Myeloma America Support
9 years ago
CAR - T and safer Bone Marrow Transplants
Haemagological Times has this month published a couple of research articles examining ways to improve control of Graft Versus Host Disease (GVHD), the potentially deadly risk associated with bone marrow transplants, where T-Lymphocytes produced from the donor's transplanted bone marrow attack the transplant
Haemagological Times has this month published a couple of research articles examining ways to improve control of Graft Versus Host Disease (GVHD), the potentially deadly risk associated with bone marrow transplants, where T-Lymphocytes produced from the donor's transplanted bone marrow attack the transplant
AussieNeil
Partner
in
CLL Support
9 years ago
Should GCA sufferers take the shingles vaccine?
http://consumer.healthday.com/senior-citizen-information-31/misc-aging-news-10/study-ties-shingles-virus-to-dangerous-blood-vessel-disease-in-elderly-696591.html “…The researchers looked for links between the condition and the chickenpox/shingles virus because of the unusual way that it replicates in
http://consumer.healthday.com/senior-citizen-information-31/misc-aging-news-10/study-ties-shingles-virus-to-dangerous-blood-vessel-disease-in-elderly-696591.html “…The researchers looked for links between the condition and the chickenpox/shingles virus because of the unusual way that it replicates in
Asbeck
in
PMRGCAuk
9 years ago
Seafood: Keeping It Healthy & Safe
From our blog at cookforyourlife.org, written by Alexandra Rothwell, MPH, RD, CSO, CDN During the spring and summer months, if we’re not indulging in lobster rolls or moules frites, many of us feel more naturally inclined to eat lighter fresh foods from seasonal produce and seafood. Shellfish, such
From our blog at cookforyourlife.org, written by Alexandra Rothwell, MPH, RD, CSO, CDN During the spring and summer months, if we’re not indulging in lobster rolls or moules frites, many of us feel more naturally inclined to eat lighter fresh foods from seasonal produce and seafood. Shellfish, such
tydonald
in
Healthy Eating
9 years ago
experience CLL Ibrutinib Colitis
Hi Maybe there is a better route out of this? I am a man in the UK and was diagnosed with CLL aged 38 in 2007. I had six rounds of FCR and achieved MRD. In January 2011 ill with EBV for a year. June 2012 started FCR again. Five times. January 2013 0.0 neutrophils for eight days. May 2013 dexamethasone
Hi Maybe there is a better route out of this? I am a man in the UK and was diagnosed with CLL aged 38 in 2007. I had six rounds of FCR and achieved MRD. In January 2011 ill with EBV for a year. June 2012 started FCR again. Five times. January 2013 0.0 neutrophils for eight days. May 2013 dexamethasone
Corin850
in
CLL Support
9 years ago
Stem Cell Transplant
I am 64 years old and was diagnosed with primary MF four years ago. I have recently been part of the Pacritinib drug trial but have had to discontinue taking the drug due to complications. My consultant has raised the possibility of stem cell transplant. I would be interested in know in anybody's
I am 64 years old and was diagnosed with primary MF four years ago. I have recently been part of the Pacritinib drug trial but have had to discontinue taking the drug due to complications. My consultant has raised the possibility of stem cell transplant. I would be interested in know in anybody's
john2cv6
in
MPN Voice
9 years ago
Newly diagnosed with PMR
Being newly diagnosed with PMR I am so pleased that I found this site to learn and share more about this condition. I am grateful to Kate Gilbert who mentioned the site in her fantastic book ' Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. Although I live in New Zealand I was able
Being newly diagnosed with PMR I am so pleased that I found this site to learn and share more about this condition. I am grateful to Kate Gilbert who mentioned the site in her fantastic book ' Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. Although I live in New Zealand I was able
magmapearl3
in
PMRGCAuk
9 years ago
B vitamins
Hi everyone. Can anyone recommend a good B Complex that contains B1 and b6?. Any ones I've seen dont contain these 2. I also take folate and don't want something that contains extra folic acid. Thanks
Hi everyone. Can anyone recommend a good B Complex that contains B1 and b6?. Any ones I've seen dont contain these 2. I also take folate and don't want something that contains extra folic acid. Thanks
annette12
in
Thyroid UK
9 years ago
Do I need to eat organic foods? Entry from Alexandra Rothwell, MPH, RD, CSO, CDN
As an oncology nutritionist, I meet with people throughout the stages of treatment, recovery, and survivorship. The relationship between food and cancer is an ever-developing and popular field, and because of this, the people I meet with tend to have many questions. The following are a few of the most
As an oncology nutritionist, I meet with people throughout the stages of treatment, recovery, and survivorship. The relationship between food and cancer is an ever-developing and popular field, and because of this, the people I meet with tend to have many questions. The following are a few of the most
tydonald
in
Healthy Eating
9 years ago
Giant Cell Arteritis - Take part in Clinical Research
Have you been diagnosed with GCA? Are you happy to try a new treatment? Are you happy to be involved in a clinical study? Please follow this link for more details. http://www.vasculitis.org.uk/news/giant-cell-temporal-arteritis-clinical-study
Have you been diagnosed with GCA? Are you happy to try a new treatment? Are you happy to be involved in a clinical study? Please follow this link for more details. http://www.vasculitis.org.uk/news/giant-cell-temporal-arteritis-clinical-study
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
How should I eat during chemotherapy? Entry from Alexandra Rothwell, MPH, RD, CSO, CDN
As an oncology nutritionist, I meet with people throughout the stages of treatment, recovery, and survivorship. The relationship between food and cancer is an ever-developing and popular field, and because of this, the people I meet with tend to have many questions. The following are a few of the most
As an oncology nutritionist, I meet with people throughout the stages of treatment, recovery, and survivorship. The relationship between food and cancer is an ever-developing and popular field, and because of this, the people I meet with tend to have many questions. The following are a few of the most
tydonald
in
Healthy Eating
9 years ago
Does Sugar Feed Cancer? Entry from Alexandra Rothwell, MPH, RD, CSO, CDN
As an oncology nutritionist, I meet with people throughout the stages of treatment, recovery, and survivorship. The relationship between food and cancer is an ever- developing and popular field, and because of this, the people I meet with tend to have many questions. The following are a few of the
As an oncology nutritionist, I meet with people throughout the stages of treatment, recovery, and survivorship. The relationship between food and cancer is an ever- developing and popular field, and because of this, the people I meet with tend to have many questions. The following are a few of the
tydonald
in
Healthy Eating
9 years ago
Child with sickle cell
I have a question my daughter is 4 and had sickle cell trait, about every two to three weeks she says that her stomach is hurting. She still eats and plays but all day long she says her stomach is hurting. Later on in the day she throws up everywhere. She does this about 3 times and then after that
I have a question my daughter is 4 and had sickle cell trait, about every two to three weeks she says that her stomach is hurting. She still eats and plays but all day long she says her stomach is hurting. Later on in the day she throws up everywhere. She does this about 3 times and then after that
gregndi
in
Sickle Cell Society
9 years ago
Interesting research on antibodies
Was very interested by this research into how autoimmune disorders (AD) arise. My mother has rheumatoid arthritis and I have psoriasis and LS. This falls in line with the article I'm pasting from, 'When the immune system goes on the attack'. "Hal Scofield, Professor of Medicine at the University of Oklahoma's
Was very interested by this research into how autoimmune disorders (AD) arise. My mother has rheumatoid arthritis and I have psoriasis and LS. This falls in line with the article I'm pasting from, 'When the immune system goes on the attack'. "Hal Scofield, Professor of Medicine at the University of Oklahoma's
Shezian
in
Vasculitis UK
9 years ago
"In The Loop Leeds" - keeping you informed about research
In the Loop is a pilot project run by Dr Louise Sorensen from the University of Leeds Rheumatic and Musculoskeletal Medicine. The project aim is to explore how they can get better at communicating research to patients, the public and non specialists. Many People have a keen interest in the latest Polymyalgia
In the Loop is a pilot project run by Dr Louise Sorensen from the University of Leeds Rheumatic and Musculoskeletal Medicine. The project aim is to explore how they can get better at communicating research to patients, the public and non specialists. Many People have a keen interest in the latest Polymyalgia
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
‘Biodegradable’ CAR may aid transplant in AML
CAR-T therapy first showed success in CLL and AML leukaemias, but one of the problems with CAR-T is that the T-cells are not selective against cancerous lymphocytes, so they keep killing off both cancerous and non-cancerous lymphocytes long after treatment initiation. For CLL patients, that means long
CAR-T therapy first showed success in CLL and AML leukaemias, but one of the problems with CAR-T is that the T-cells are not selective against cancerous lymphocytes, so they keep killing off both cancerous and non-cancerous lymphocytes long after treatment initiation. For CLL patients, that means long
AussieNeil
Partner
in
CLL Support
9 years ago
Stem cell therapy reverses multiple sclerosis
From yesterday's Telegraph: "A pioneering new stem cell treatment is allowing multiple sclerosis sufferers to walk, run and even dance again, in results branded ‘miraculous’ by doctors. Patients who have been wheelchair-bound for 10 years have regained the use of their legs in the groundbreaking therapy
From yesterday's Telegraph: "A pioneering new stem cell treatment is allowing multiple sclerosis sufferers to walk, run and even dance again, in results branded ‘miraculous’ by doctors. Patients who have been wheelchair-bound for 10 years have regained the use of their legs in the groundbreaking therapy
KeithS
in
AMN EASIER
9 years ago
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