Search
Search
About
Log in
Join
Experiences with
Cutaneous T cell lymphoma (CTCL)
Posts
Communities
1,643 public posts
Filter results
Intro
Hi I'm Christiana. I was diagnosed with T cell lymphoblastic lymphoma, stage 4b in 2013. My treatment protocol has been ukall12. After 6 months inpatient treatment then and a donor stem cell transplant I'm doing well, being monitored frequently but all's good. I've been writing a blog this year diarying
Hi I'm Christiana. I was diagnosed with T cell lymphoblastic lymphoma, stage 4b in 2013. My treatment protocol has been ukall12. After 6 months inpatient treatment then and a donor stem cell transplant I'm doing well, being monitored frequently but all's good. I've been writing a blog this year diarying
Christiana_
in
Leukaemia Support
8 years ago
Chicago LRF Conference News
Hi everyone, Just a quick highlight from the Conference: We are beginning to see a move from single use of the exciting new targeting agents to see if better remissions if not cures can be achieved through combining these newer agents. Dr. Craig Portell had a Poster presentation on a Clinical Trial combining
Hi everyone, Just a quick highlight from the Conference: We are beginning to see a move from single use of the exciting new targeting agents to see if better remissions if not cures can be achieved through combining these newer agents. Dr. Craig Portell had a Poster presentation on a Clinical Trial combining
ThreeWs
in
CLL Support
8 years ago
Tocilizumab and Giant Cell Arteritis
John Mills on behalf of VUK is Interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad) NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation. Please contact John.mills@vasculitis.org.uk
John Mills on behalf of VUK is Interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad) NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation. Please contact John.mills@vasculitis.org.uk
Suzym2u
in
PMRGCAuk
8 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Tocilizumab for Giant Cell Arteritis (Temporal Arteritis)
John Mills on behalf of VUK are interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad) NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation. Please contact John.mills@vasculitis.org.uk
John Mills on behalf of VUK are interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad) NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation. Please contact John.mills@vasculitis.org.uk
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
My labs are MCH is 26.2. My RDW is 15.1.
My concern is that I might have something wrong. In my family sickle cell anemia runs on my mother's side of the family. My second cousin has that she died from it. I also want to know is it possible I might have it.
My concern is that I might have something wrong. In my family sickle cell anemia runs on my mother's side of the family. My second cousin has that she died from it. I also want to know is it possible I might have it.
AjahY
in
Pernicious Anaemia Society
8 years ago
Help night sweats
Hello thank you for allowing me to be part of your group. I was diagnosed in 2012 with lymphoma the cancer had attacked my L2 and I have a small hole in that bone. I had radiation and chemo. I also had 9 shots of ge a reclass drug. They did scans recently because I was having so much trouble with my
Hello thank you for allowing me to be part of your group. I was diagnosed in 2012 with lymphoma the cancer had attacked my L2 and I have a small hole in that bone. I had radiation and chemo. I also had 9 shots of ge a reclass drug. They did scans recently because I was having so much trouble with my
clairerrut
in
Non Hodgkin's Lymphoma Friends
8 years ago
Rising haematocrit levels
Hi I haven't been in touch for a while. I am jack 2 positive ET diagnosed 7 years ago. I take 500 hydrea daily and plavix. My haematocrit level has been rising and is now at .49. Does anyone know if there are any diet changes I could make to reduce this a bit? I read something about spinach and broccoli
Hi I haven't been in touch for a while. I am jack 2 positive ET diagnosed 7 years ago. I take 500 hydrea daily and plavix. My haematocrit level has been rising and is now at .49. Does anyone know if there are any diet changes I could make to reduce this a bit? I read something about spinach and broccoli
Margo18
in
MPN Voice
8 years ago
Hemoglobin c trait...SCT..SCA...what do I have
I am 44 I was diagnosed with SCA 3 years ago after several visits to the hospital, several admissions...multiple blood transfusions and a hematologist ...I am now being told that I do not have SCT or SCD or SCA but Hemoglobin C trait and that this causes no problems at all. Funny thing is this I never
I am 44 I was diagnosed with SCA 3 years ago after several visits to the hospital, several admissions...multiple blood transfusions and a hematologist ...I am now being told that I do not have SCT or SCD or SCA but Hemoglobin C trait and that this causes no problems at all. Funny thing is this I never
Diamondlyfe16
in
Sickle Cell Society
8 years ago
What to buy OH for Christmas
As Christmas is looming again I thought I'd tell you how to bring back that childhood feeling of the excitement at being faced with a pile of presents not knowing what you were about to unwrap. I don't know about anyone else but now that gifts are often requests rather than surprises Christmas has kind
As Christmas is looming again I thought I'd tell you how to bring back that childhood feeling of the excitement at being faced with a pile of presents not knowing what you were about to unwrap. I don't know about anyone else but now that gifts are often requests rather than surprises Christmas has kind
ShellyC23
in
PMRGCAuk
8 years ago
Sickle Cell Trait - HELP
I found this site searching to see if there is any correlation between horrible menstrual cycles, fainting spells or migraines and sickle cell trait. I feel like I take my daughter to the Dr all the time with different problems and ask them if there is anything linking her medical issues to the trait
I found this site searching to see if there is any correlation between horrible menstrual cycles, fainting spells or migraines and sickle cell trait. I feel like I take my daughter to the Dr all the time with different problems and ask them if there is anything linking her medical issues to the trait
mssara
in
Sickle Cell Society
8 years ago
Symptoms and the trait
Hi everyone. We're seeing a lot of posts about symptoms and sickle cell trait at the moment, which is food for thought, and we might in future produce information resources about this, because there isn't a lot out there. A quick overview on what's known: -Sickle cell trait means you carry one copy of
Hi everyone. We're seeing a lot of posts about symptoms and sickle cell trait at the moment, which is food for thought, and we might in future produce information resources about this, because there isn't a lot out there. A quick overview on what's known: -Sickle cell trait means you carry one copy of
SCSZoe
Administrator
in
Sickle Cell Society
8 years ago
Gluten-free & Dapsone - but still struggling
I've been GF and on Dapsone for two full years. I've been treating at Mayo Clinic where their reputation leads one to be optimistic about resolving this miserable condition. This week I told the doc that perhaps I should stop the Dapsone - to see if it actually makes any difference - because my symptoms
I've been GF and on Dapsone for two full years. I've been treating at Mayo Clinic where their reputation leads one to be optimistic about resolving this miserable condition. This week I told the doc that perhaps I should stop the Dapsone - to see if it actually makes any difference - because my symptoms
dwaage1
in
Gluten Free Guerrillas
8 years ago
Starting clinical trial for non noudle marginal lymphoma
Hi my name is Theresa, I was diagnosed with low grade marginal Lymphoma almost 2 years ago,. At that time I had a mass on back for which I received radiation and rituxin infusion once every week for four weeks and a maintenance schedule of once every two months for a 2 year period. I was about 6 months
Hi my name is Theresa, I was diagnosed with low grade marginal Lymphoma almost 2 years ago,. At that time I had a mass on back for which I received radiation and rituxin infusion once every week for four weeks and a maintenance schedule of once every two months for a 2 year period. I was about 6 months
Tmcarmicino
in
Non Hodgkin's Lymphoma Friends
8 years ago
NCT02478125 - for prostate cancer metatstses
This was at Johns Hopkins just last week. I went down for a screening interview, which was wonderful, and the whole experience was fantastic. Unfortunately, I was too healthy for the trial, so I have to at least wait. I characterize it as an "off label" use of a pretty standard procedure: essentially
This was at Johns Hopkins just last week. I went down for a screening interview, which was wonderful, and the whole experience was fantastic. Unfortunately, I was too healthy for the trial, so I have to at least wait. I characterize it as an "off label" use of a pretty standard procedure: essentially
Hidden
in
Understanding Clinical Trials
8 years ago
Sharing resources
Hi Everyone - I am new to this online community. I am not a cancer patient, however I am a caregiver with substantial cancer experience. I provided primary care to both of my parents following their diagnosis and treatment for bladder cancer (both deceased). When my husband was diagnosed originally
Hi Everyone - I am new to this online community. I am not a cancer patient, however I am a caregiver with substantial cancer experience. I provided primary care to both of my parents following their diagnosis and treatment for bladder cancer (both deceased). When my husband was diagnosed originally
AnneNewman
in
Non Hodgkin's Lymphoma Friends
8 years ago
Watch and Wait - LGFL
I was diagnosed in July of 2015 with Low Grade Follicular Lymphoma. I had one node which was surgically removed. I am stage 1 Grade 1. I am in watch and wait. I wish there was some treatment that could cure this since I am in a low level but my oncologists says there is not. Although I am fine it
I was diagnosed in July of 2015 with Low Grade Follicular Lymphoma. I had one node which was surgically removed. I am stage 1 Grade 1. I am in watch and wait. I wish there was some treatment that could cure this since I am in a low level but my oncologists says there is not. Although I am fine it
Josie2rulrs
in
Non Hodgkin's Lymphoma Friends
8 years ago
Advice on S.C.D and S.C.T
Hello my name is Cazzera, and I have not replied for a while, as I am doing so much much research to educate for Sickle Cell Disease which I suffer form myself. I would just like to advice the post about having sickle cell trait and suffered fro years. Although I am not medically trained I would advice
Hello my name is Cazzera, and I have not replied for a while, as I am doing so much much research to educate for Sickle Cell Disease which I suffer form myself. I would just like to advice the post about having sickle cell trait and suffered fro years. Although I am not medically trained I would advice
cazzera
in
Sickle Cell Society
8 years ago
Newly Diagnosed CLL plus CTCL
I celebrated my 60th birthday last May by being diagnosed with CTCL (
cutaneous
T
-
cell
lymphoma
) and CLL (Stage 0, all genetic markers in my favor). Initially I had a surprising sense of relief, as I swim for exercise and was getting frustrated with my performance.
I celebrated my 60th birthday last May by being diagnosed with CTCL (
cutaneous
T
-
cell
lymphoma
) and CLL (Stage 0, all genetic markers in my favor). Initially I had a surprising sense of relief, as I swim for exercise and was getting frustrated with my performance.
prhamann
in
CLL Support
8 years ago
The Sickle Cell Journey
I thank The Almighty God that. I don't have sickle cell disease because having the trait has been more than i can stand over the years. When i was a young girl i was hospitalized off & on do to Crisis. I had to take shots daily during my stay for weeks at a time. When in my 20's i had criss so bad i
I thank The Almighty God that. I don't have sickle cell disease because having the trait has been more than i can stand over the years. When i was a young girl i was hospitalized off & on do to Crisis. I had to take shots daily during my stay for weeks at a time. When in my 20's i had criss so bad i
Tone124
in
Sickle Cell Society
8 years ago
Follicular Lymphoma Patient Survey
If you have follicular lymphoma and have been treated with obinituzumab (Gazyva) you can help by completing our survey. Lymphoma Canada is preparing a submission for the panCanadian Oncology Drug Review (pCODR) for: Obinituzumab in combination with chemotherapy, followed by obinutuzumab maintenance
If you have follicular lymphoma and have been treated with obinituzumab (Gazyva) you can help by completing our survey. Lymphoma Canada is preparing a submission for the panCanadian Oncology Drug Review (pCODR) for: Obinituzumab in combination with chemotherapy, followed by obinutuzumab maintenance
LCAdmin
in
Non Hodgkin's Lymphoma Friends
8 years ago
1
...
60
61
62
...
83
Next page
20
30
40
50
60
70
80
Filter results
Clear filters
Posted in
All communities
CLL Support
545 results
PMRGCAuk
202 results
MPN Voice
130 results
View top 10 communities
Sort by
Most Relevant
Newest