Search
Search
About
Log in
Join
Experiences with
Cutaneous T cell lymphoma (CTCL)
Posts
Communities
1,643 public posts
Filter results
Very poorly newbie - Desperate for help
Hello everyone... I've been meaning to post on here for a long time but get extremely overwhelmed and have so much that has happened/is happening that I don't know where to start, trying to gather all the information and put it in to words with declining cognitive impairment and extreme fatigue is so
Hello everyone... I've been meaning to post on here for a long time but get extremely overwhelmed and have so much that has happened/is happening that I don't know where to start, trying to gather all the information and put it in to words with declining cognitive impairment and extreme fatigue is so
Flossles
in
Thyroid UK
6 years ago
monocyte jump
65 year old male, diagnosed 3/12. Watch and wait, monocytes never an issue until last test, jumped from 0.8 to 6.1 in 3 months. WBC 71 and creeping up. Any thoughts? Thanks
65 year old male, diagnosed 3/12. Watch and wait, monocytes never an issue until last test, jumped from 0.8 to 6.1 in 3 months. WBC 71 and creeping up. Any thoughts? Thanks
fishnman
in
CLL Support
6 years ago
PA when IFA and PCA test results are negative
Hi All, I commented on a recent thread that I thought some people had PA even when Intrinsic Factor Antibody test and Parietal Cell Antibody test results were both negative. I speculated that this could be due to an immunoglobulin deficiency leading to inability to produce certain antibodies. I've now
Hi All, I commented on a recent thread that I thought some people had PA even when Intrinsic Factor Antibody test and Parietal Cell Antibody test results were both negative. I speculated that this could be due to an immunoglobulin deficiency leading to inability to produce certain antibodies. I've now
Sleepybunny
in
Pernicious Anaemia Society
6 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Miltion
Hello: I am a 64 year old male. I was diagnosed with Non-Hodgkin's Lymphoma cll in August of 2017. My doctor put me on Improvica. I had some pretty nasty side effects for the first 5 months. I have not had any since early January. My blood work is always good. How long can you live with this? Is there
Hello: I am a 64 year old male. I was diagnosed with Non-Hodgkin's Lymphoma cll in August of 2017. My doctor put me on Improvica. I had some pretty nasty side effects for the first 5 months. I have not had any since early January. My blood work is always good. How long can you live with this? Is there
larry54
in
CLL Support
6 years ago
GCA and tocilizumab withdrawal
Has anyone given up taking tocilizumab (Actemra) and remained in remission or did you get GCA back. Is there a program to reduce injections in stages?
Has anyone given up taking tocilizumab (Actemra) and remained in remission or did you get GCA back. Is there a program to reduce injections in stages?
christine2715
in
PMRGCAuk
6 years ago
Sickle cell and?
I have sickle cell disease and just found out I have chronic fatigue syndrome also called ME. I wanted to find out what other conditions people are dealing with plus sickle cell and how you cope. I have 3 children so I guess you will have an idea as to how I am struggling to cope.
I have sickle cell disease and just found out I have chronic fatigue syndrome also called ME. I wanted to find out what other conditions people are dealing with plus sickle cell and how you cope. I have 3 children so I guess you will have an idea as to how I am struggling to cope.
jo19
in
Sickle Cell Society
6 years ago
Concern about another cancer
On trial of Ibrutinib and venetoclax for 3 months. Very concerned because I got called to have a diagnostic mammogram and ultrasound after my routine mammogram. Is it common to have another cancer with Cll. Thank you
On trial of Ibrutinib and venetoclax for 3 months. Very concerned because I got called to have a diagnostic mammogram and ultrasound after my routine mammogram. Is it common to have another cancer with Cll. Thank you
Ninagram
in
CLL Support
6 years ago
capita doing home visit for PIP
I suffer from fibro myalgia, and low grade lymphoma. recovering from cancer treatment both chemo and radiotherapy in 2015. i am having a official from capitia visied me to assess for PIP. what sort of questions will i be asked. i tried to be as honest as possible when completing the form and wrote about
I suffer from fibro myalgia, and low grade lymphoma. recovering from cancer treatment both chemo and radiotherapy in 2015. i am having a official from capitia visied me to assess for PIP. what sort of questions will i be asked. i tried to be as honest as possible when completing the form and wrote about
123456asd
in
Fibromyalgia Action UK
6 years ago
visit from capitia to assess for PIP
i am recovering from cancer treatment in 2015 both chemo and radiotherapy and suffer from fibro myaglia and low grade lymphoma . i am having an assessor from capita doing a home visit on mon . what sort of questions will i be asked. what sort of answers will i give. i was totally honest in filling out
i am recovering from cancer treatment in 2015 both chemo and radiotherapy and suffer from fibro myaglia and low grade lymphoma . i am having an assessor from capita doing a home visit on mon . what sort of questions will i be asked. what sort of answers will i give. i was totally honest in filling out
123456asd
in
Fibromyalgia Action UK
6 years ago
Molecular Improvement – Exercise, & Dietary Regime or Medication(?)
Morning/Gooday/Good Evening (?)... :-) To all my MPN cousins, wherever you might be located… Recently, I underwent my second BMB, in preparation for the consideration of undergoing an Allogenic Stem Cell Transplant (ASCT), as in February 2018 I learned that I also have the ASXL1 mutation as well as
Morning/Gooday/Good Evening (?)... :-) To all my MPN cousins, wherever you might be located… Recently, I underwent my second BMB, in preparation for the consideration of undergoing an Allogenic Stem Cell Transplant (ASCT), as in February 2018 I learned that I also have the ASXL1 mutation as well as
socrates_8
in
MPN Voice
6 years ago
Any ideas?
Hi. I have joined this community to seek some idea as to what to expect for my friend. He was diagnosed with ALL earlier this year. All very sudden. He went through chemo regimes and subsequent stem cell transplant two months ago. All bloods and recovery going well. Last bloods about a week ago - all
Hi. I have joined this community to seek some idea as to what to expect for my friend. He was diagnosed with ALL earlier this year. All very sudden. He went through chemo regimes and subsequent stem cell transplant two months ago. All bloods and recovery going well. Last bloods about a week ago - all
Marilyn1959
in
Leukaemia Support
6 years ago
Bendeka, a fast infusion form of bendamustine, gets 7 year exclusivity in U.S.
Eagle Pharmaceuticals announced today that the U.S. FDA has granted seven years of orphan drug exclusivity (ODE) in the U.S., for Bendeka (bendamustine hydrochloride injection, or bendamustine HCI), a liquid, low-volume (50 mL) and short-time 10-minute infusion formulation of bendamustine hydrochloride
Eagle Pharmaceuticals announced today that the U.S. FDA has granted seven years of orphan drug exclusivity (ODE) in the U.S., for Bendeka (bendamustine hydrochloride injection, or bendamustine HCI), a liquid, low-volume (50 mL) and short-time 10-minute infusion formulation of bendamustine hydrochloride
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
"9 out of 10 doctors on our payroll, recommend this product!" ~ Big Pharma : (
Oh Goody!!! Bio-Thera Solutions, a global biotechnology company based in Guangzhou, China, recently announced that it has initiated a phase 1 clinical trial for BAT1806, a proposed tocilizumab (Actemra) biosimilar. Just what the world needs another Valsartan disaster! https://www.centerforbiosimilars.com
Oh Goody!!! Bio-Thera Solutions, a global biotechnology company based in Guangzhou, China, recently announced that it has initiated a phase 1 clinical trial for BAT1806, a proposed tocilizumab (Actemra) biosimilar. Just what the world needs another Valsartan disaster! https://www.centerforbiosimilars.com
Hidden
in
PMRGCAuk
6 years ago
IVF with donor eggs, previous stem cell transplant and early menopause
Hi ladies Im not sure if you will be able to give any advice but 14 years ago i had leukaemia and my treatment involved chemo and total body radiation for stem cell transplant. My periods stopped straight away and i went into early menopause at 20! I went to see a fertility clinic years ago as i was
Hi ladies Im not sure if you will be able to give any advice but 14 years ago i had leukaemia and my treatment involved chemo and total body radiation for stem cell transplant. My periods stopped straight away and i went into early menopause at 20! I went to see a fertility clinic years ago as i was
Caitlyn84
in
Fertility Network UK
6 years ago
Cll diagnosis for my dad
Hi my dad who is going to be 78 this November was told yesterday that he has cll stage 4 - so I believe that means it’s in his bone marrow ( he had a biopsy to confirm that) his lymph nodes are enlarged ( he also had a biopsy on one in his neck which confirmed non Hodgkin low grade lymphoma ) and the
Hi my dad who is going to be 78 this November was told yesterday that he has cll stage 4 - so I believe that means it’s in his bone marrow ( he had a biopsy to confirm that) his lymph nodes are enlarged ( he also had a biopsy on one in his neck which confirmed non Hodgkin low grade lymphoma ) and the
Suskime
in
CLL Support
6 years ago
Low Dose Naltrexone
Hello Everyone! I am new here and waiting on my diagnosis. I take low dose Naltrexone to help lower my thyroid antibodies and it is working! Has anyone ever heard of taking this to lower APS antibodies? Thanks so much!
Hello Everyone! I am new here and waiting on my diagnosis. I take low dose Naltrexone to help lower my thyroid antibodies and it is working! Has anyone ever heard of taking this to lower APS antibodies? Thanks so much!
Tickytot
in
Hughes Syndrome APS Forum
6 years ago
Sickle Cell News - July-September 2018 Edition
Major Stories: 1. Trailblazing Myth-Breaker: Police Sergeant Winston Mmagu lives with sickle cell anaemia – how, how does he cope?! 2. Canada Celebrates 1st official Sickle Cell Day. 3. Genetics Professor Cyril Otoikhian throws damper on World Sickle Cell Day celebrations in Nigeria. Universally
Major Stories: 1. Trailblazing Myth-Breaker: Police Sergeant Winston Mmagu lives with sickle cell anaemia – how, how does he cope?! 2. Canada Celebrates 1st official Sickle Cell Day. 3. Genetics Professor Cyril Otoikhian throws damper on World Sickle Cell Day celebrations in Nigeria. Universally
sicklecellnews
in
Sickle Cell Society
6 years ago
MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF
A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT) was created to facilitate communication between myelofibrosis patients and their physicians. The SSTT is a portable on-line tool based on a
A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT) was created to facilitate communication between myelofibrosis patients and their physicians. The SSTT is a portable on-line tool based on a
Mazcd
MPNVoice
in
MPN Voice
6 years ago
Getting there,!!
Almost 9 months since my stem cell transplant tho still breathless getting stronger and being more positive daily,!!
Almost 9 months since my stem cell transplant tho still breathless getting stronger and being more positive daily,!!
Topteam
in
Leukaemia Support
6 years ago
GCA and clinical trials
I was just diagnosed Great cell Arteritise, I am currently on prednisone. I have an opportunity to joint a clinical trial group, that combines prednisone and Stelara. Has anyone had any experience with clinical trial using drug combinations?
I was just diagnosed Great cell Arteritise, I am currently on prednisone. I have an opportunity to joint a clinical trial group, that combines prednisone and Stelara. Has anyone had any experience with clinical trial using drug combinations?
golf26
in
PMRGCAuk
6 years ago
1
...
40
41
42
...
83
Next page
10
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