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CLL and Myeloma anyone?
I've had CLL with no treatment for 11 years but recently broke my collarbone and xray and CT scan revealed multiple myeloma. Treatment for myeloma started 4 days ago and the plan is to have stem cell transplant in 3-4 months. Anyone in the same boat and could stem cell transplant also help the CLL.
I've had CLL with no treatment for 11 years but recently broke my collarbone and xray and CT scan revealed multiple myeloma. Treatment for myeloma started 4 days ago and the plan is to have stem cell transplant in 3-4 months. Anyone in the same boat and could stem cell transplant also help the CLL.
Hidden
in
CLL Support
6 years ago
The Lighter Side: THUNDERBIRDS are ‘GO’! At Last, the ‘Write Me Funny…’ book website goes ‘Live’ ;-)
Greetings Polymylingers and Pred Playmates everywhere. I hope you're well (or as well as can be), and bearing-up after the Icy Winter weather. :-) I know. Just when you thought (or perhaps hoped?) I’d gone away permanently, I’m BACK - and delighted to announce that the long awaited website giving
Greetings Polymylingers and Pred Playmates everywhere. I hope you're well (or as well as can be), and bearing-up after the Icy Winter weather. :-) I know. Just when you thought (or perhaps hoped?) I’d gone away permanently, I’m BACK - and delighted to announce that the long awaited website giving
markbenjamin57
in
PMRGCAuk
6 years ago
Jakafi scare - MPN Research Foundation reply
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Paul123456
in
MPN Voice
6 years ago
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Stem Cell Transplant
I've just been watching the BBC new and they were talking about a relatively new treatment for MS that kills off your immune system with chemo and then transplants your own stem cells back in, re-booting your immune system. Can all autoimmune disease patients benefit from a stem cell transplant and would
I've just been watching the BBC new and they were talking about a relatively new treatment for MS that kills off your immune system with chemo and then transplants your own stem cells back in, re-booting your immune system. Can all autoimmune disease patients benefit from a stem cell transplant and would
AMDP
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
NICE are looking for patient experts for the NICE Scientific Advisory Panel for GCA
The experience we are looking for in these patient experts - It could also involve attending a meeting in London at some stage. We are looking for someone with Giant Cell Arteritis who is not yet in remission (but has relapsing disease) and has been on glucocorticoid-based treatment long-term and is
The experience we are looking for in these patient experts - It could also involve attending a meeting in London at some stage. We are looking for someone with Giant Cell Arteritis who is not yet in remission (but has relapsing disease) and has been on glucocorticoid-based treatment long-term and is
John_Mills
Vasculitis UK
in
Vasculitis UK
6 years ago
Gamma globulin
Today I go for my monthly gamma globulin infusion I usually do well except I get very tired and at times nauseous. Anyone here gets these infusions? I have been on Imbruvica for 4 years with little side affects, but recently my wbc and lymphocytes are climbing and my platelets are dropping slowly. I
Today I go for my monthly gamma globulin infusion I usually do well except I get very tired and at times nauseous. Anyone here gets these infusions? I have been on Imbruvica for 4 years with little side affects, but recently my wbc and lymphocytes are climbing and my platelets are dropping slowly. I
MartiP2009
in
CLL Support
6 years ago
Outcomes of haploidentical stem cell transplantation for chronic lymphocytic leukemia: a retrospective study
[i]An allogeneic haemopoietic stem cell (HPC) transplant involves matching a patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type, with that of a related or unrelated donor. HLA proteins are found on all cells of our body and are the main way the immune system tells the
[i]An allogeneic haemopoietic stem cell (HPC) transplant involves matching a patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type, with that of a related or unrelated donor. HLA proteins are found on all cells of our body and are the main way the immune system tells the
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
NICE approves Tocilizumab for Giant Cell Arteritis!
PMRGCAuk is delighted to announce that today is a really big day! NICE, the National Institute of Health and Clinical Excellence, has approved the use of tocilizumab on the second round of consultation, subject to their final appraisal report on 22 March. It will only be available for relapsing and refractory
PMRGCAuk is delighted to announce that today is a really big day! NICE, the National Institute of Health and Clinical Excellence, has approved the use of tocilizumab on the second round of consultation, subject to their final appraisal report on 22 March. It will only be available for relapsing and refractory
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
6 years ago
Corticoid-sparing agents
Therapeutic Advances in Chronic Disease Update on the management of giant cell arteritis Janet Roberts, Alison Clifford First Published March 28, 2017 Review Article Review of corticoid-sparing agents.
Therapeutic Advances in Chronic Disease Update on the management of giant cell arteritis Janet Roberts, Alison Clifford First Published March 28, 2017 Review Article Review of corticoid-sparing agents.
LCHRISTOP10
in
PMRGCAuk
6 years ago
Thoughts on PV/ET
There are a lot of new posters here (I’ve been here 3 months and feel like an old hand!) who are understandably nervous and worried. The dreaded cancer word and for many of us, our first real brush with our own mortality. However, there are two really important factors we need to focus on. PV and especially
There are a lot of new posters here (I’ve been here 3 months and feel like an old hand!) who are understandably nervous and worried. The dreaded cancer word and for many of us, our first real brush with our own mortality. However, there are two really important factors we need to focus on. PV and especially
Paul123456
in
MPN Voice
6 years ago
stem cell transplantation
Did anyone try stem cell transplantation?
Did anyone try stem cell transplantation?
Anne_08
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Back to the Middle ages
Earth is flat or bone marrow transplant. Sad stories.
Earth is flat or bone marrow transplant. Sad stories.
nikolahn
in
AMN EASIER
6 years ago
New to GCA
Just got diagnosed with Giant cell arteritis. Have so many questions and feeling scared. Did the pills help? How long have you been on them? Do you get to a point that you are good and you are cured? Please advise..
Just got diagnosed with Giant cell arteritis. Have so many questions and feeling scared. Did the pills help? How long have you been on them? Do you get to a point that you are good and you are cured? Please advise..
viamonv
in
PMRGCAuk
6 years ago
Multiple autoimmune conditions. Lupus too?
Where to start!I've been quite poorly with scleroderma, and I also have PBC, Sjogrens, and hypothyroidism. I have osteoarthritis and hyper flexibility joint syndrome. I am ACA pos, AMA pos, Igm pos, gastric parietal cell antibody positive, and I have just found out that I'm anti ro pos, and anti sm pos
Where to start!I've been quite poorly with scleroderma, and I also have PBC, Sjogrens, and hypothyroidism. I have osteoarthritis and hyper flexibility joint syndrome. I am ACA pos, AMA pos, Igm pos, gastric parietal cell antibody positive, and I have just found out that I'm anti ro pos, and anti sm pos
MissusTee
in
LUPUS UK
7 years ago
Newly diagnosed – ET Jak2+ with added drama!
Hi everyone! I've been wanting to post here for some time, but it's taken me a couple of months to get a diagnosis and it's been a bit of a rollercoaster! Back in September 2017 I went to the doctor with weight loss and fatigue. Blood tests came back "normal" but a scan revealed I had a very enlarged
Hi everyone! I've been wanting to post here for some time, but it's taken me a couple of months to get a diagnosis and it's been a bit of a rollercoaster! Back in September 2017 I went to the doctor with weight loss and fatigue. Blood tests came back "normal" but a scan revealed I had a very enlarged
Timjonze
in
MPN Voice
6 years ago
Advice for veno-occlusive/sinosoidal obstruction disease
Hi everyone, I’m new here. I’m 30 years old and I started having right upper abdomen pain about 18 months ago. To cut a very long story short I have now had a tentative diagnosis of VOD/SOD following many scans and liver biopsy. I am in pain every day but my LFTs are all normal and I don’t have ascites
Hi everyone, I’m new here. I’m 30 years old and I started having right upper abdomen pain about 18 months ago. To cut a very long story short I have now had a tentative diagnosis of VOD/SOD following many scans and liver biopsy. I am in pain every day but my LFTs are all normal and I don’t have ascites
Beedee87
in
British Liver Trust
7 years ago
Looks like I need to watch what I say
I like to share my experiences, what I do and how I feel. Whenever that happens it opens up a whole world of replies. It looks like my last post was a step to far for this forum. I am not sorry for what I said, but I will refrain from talking about my experiences in life with PMR. For those of us that
I like to share my experiences, what I do and how I feel. Whenever that happens it opens up a whole world of replies. It looks like my last post was a step to far for this forum. I am not sorry for what I said, but I will refrain from talking about my experiences in life with PMR. For those of us that
JulianJ
in
PMRGCAuk
7 years ago
Hilarious
Hi I been under the microscope again liver results are fine so I am happy,. But I have been diagnosed with severe anaemia (explains why I am knackered constantly) anyway they are now trying to figure out the cause of this and consistent low RBC, WBC and platelets there have been talk of bone marrow transplant
Hi I been under the microscope again liver results are fine so I am happy,. But I have been diagnosed with severe anaemia (explains why I am knackered constantly) anyway they are now trying to figure out the cause of this and consistent low RBC, WBC and platelets there have been talk of bone marrow transplant
jojokarak
in
British Liver Trust
7 years ago
Hello From Nigel In Cornwall.
Diagnosed with early stage CLL in October 2017. The day my doctor telephoned me to advise of the 5th set of blood test results and confirmed it was CLL, happened to be the very day a very good friend of mine died of ovarian cancer. GP was pretty blunt and unhelpful. "Early stage. No need to worry
Diagnosed with early stage CLL in October 2017. The day my doctor telephoned me to advise of the 5th set of blood test results and confirmed it was CLL, happened to be the very day a very good friend of mine died of ovarian cancer. GP was pretty blunt and unhelpful. "Early stage. No need to worry
OwnedByCockerSpaniel
in
CLL Support
7 years ago
Websites - useful stuff, articles, resources
I've been keeping a Word doc on articles that I knew I'd want to refer back to. Not sure if anyone interested, but here it is. Please forgive the format, I didn't know how to add a Word doc so I copied and pasted. . Articles on: Few side effects due to PMR compared with an age-matched cohort not taking
I've been keeping a Word doc on articles that I knew I'd want to refer back to. Not sure if anyone interested, but here it is. Please forgive the format, I didn't know how to add a Word doc so I copied and pasted. . Articles on: Few side effects due to PMR compared with an age-matched cohort not taking
Insight329
in
PMRGCAuk
7 years ago
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