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Cutaneous T cell lymphoma (CTCL)
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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
Martini before the Bone Marrow Biopsy work well!!!
Hello, I did a Bone Marrow Biopsy (BMB ) yesterday and had a Martini after my blood work but before the procedure. It was much easier ( pain wise) than the other 2 BMB's I had. If you have too much you need to have someone drive you home... Don't drink and Drive!!! I get the results in a couple
Hello, I did a Bone Marrow Biopsy (BMB ) yesterday and had a Martini after my blood work but before the procedure. It was much easier ( pain wise) than the other 2 BMB's I had. If you have too much you need to have someone drive you home... Don't drink and Drive!!! I get the results in a couple
Hoffy
in
CLL Support
6 years ago
Road to a BMT... oops just got there (Day +101)
Yesterday was another huge milestone on our BMT road, Day 100 - when we stared back in Nov.2017 this day seemed like a life time away. I’m so pleased to share with you that Mark has continued to progress very well and blood counts are normal and steady. The results of his bone marrow biopsy at Day 60
Yesterday was another huge milestone on our BMT road, Day 100 - when we stared back in Nov.2017 this day seemed like a life time away. I’m so pleased to share with you that Mark has continued to progress very well and blood counts are normal and steady. The results of his bone marrow biopsy at Day 60
NMMP
in
CLL Support
6 years ago
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Metoject prescription being stopped - help!
I have had a call from my lupus nurse to say my gp has written to them to say the ccg have stopped them prescribing metoject and that I will now have to get it from the hospital. All fine except the hospital don’t do the metoject pens and only do pre filled methotrexate syringes which I didn’t get on
I have had a call from my lupus nurse to say my gp has written to them to say the ccg have stopped them prescribing metoject and that I will now have to get it from the hospital. All fine except the hospital don’t do the metoject pens and only do pre filled methotrexate syringes which I didn’t get on
Mifford
in
LUPUS UK
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
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
Bendamustine
Has anyone who took Bendamustine have their lymphocytes rise at first cycle instead of begin dropping? Also it is a little red at the vein they used to infuse me.
Has anyone who took Bendamustine have their lymphocytes rise at first cycle instead of begin dropping? Also it is a little red at the vein they used to infuse me.
greygirl
in
CLL Support
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
Relapse treatment
Current treatment for relapsed Hodgkin's lymphoma - nodular sclerosing 2a - I am 67and have previously rec'd ABVD 4 cycling es
Current treatment for relapsed Hodgkin's lymphoma - nodular sclerosing 2a - I am 67and have previously rec'd ABVD 4 cycling es
Nanato6
in
Lymphoma Canada
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
Relapse or something else?
I was diagnosed with nhl in 2011, low grade follicular with evidence of high grade found in bone marrow. Following 6 round of R chop chemo and 1 high dose methotrexate chemo lumber punctures and 2 years rituximab maintenance I have lived well until now. I am now experiencing regular night sweats and
I was diagnosed with nhl in 2011, low grade follicular with evidence of high grade found in bone marrow. Following 6 round of R chop chemo and 1 high dose methotrexate chemo lumber punctures and 2 years rituximab maintenance I have lived well until now. I am now experiencing regular night sweats and
pmurdo
in
Non Hodgkin's Lymphoma Friends
6 years ago
Follicular non Hodgkin lymphoma
In 2016 I was diagnosed with non Hodgkin lymphoma stage 3. I went on watch and wait and 7 months later everything went crazy. In sept 2016 i on chemo which shrunk the one lymph node. Great, but I still feel like crap. Now I am doing maintenance for 2 years. The thing is I see people on here and
In 2016 I was diagnosed with non Hodgkin lymphoma stage 3. I went on watch and wait and 7 months later everything went crazy. In sept 2016 i on chemo which shrunk the one lymph node. Great, but I still feel like crap. Now I am doing maintenance for 2 years. The thing is I see people on here and
deburr3375
in
Non Hodgkin's Lymphoma Friends
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
6 years ago
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