Search
Search
About
Log in
Join
Experiences with
Lymphocytic leukemia
Posts
Communities
3,089 public posts
Filter results
Newly Diagnosed (9/2017) with PV and ET
I'm newly diagnosed with both PV and ET and still learning about the symptoms and treatments. Once diagnosed, my hematologist asked that I participate in a study of MPNs being conducted at UNM (University of New Mexico) Cancer Center. My hematologist has been very careful with treatment, slowly increasing
I'm newly diagnosed with both PV and ET and still learning about the symptoms and treatments. Once diagnosed, my hematologist asked that I participate in a study of MPNs being conducted at UNM (University of New Mexico) Cancer Center. My hematologist has been very careful with treatment, slowly increasing
bmboulanger
in
MPN Voice
6 years ago
How do you know that you are in remission?
Hi, I had a stem cell transplant in feb 2016 which has been successful although I did suffer from very severe gut gvhd and to some extent skin gvhd which left me hospitalised at Kings for 5 months. I’ve been out of hospital for just over a year now and have been receiving chemo as a preventative measure
Hi, I had a stem cell transplant in feb 2016 which has been successful although I did suffer from very severe gut gvhd and to some extent skin gvhd which left me hospitalised at Kings for 5 months. I’ve been out of hospital for just over a year now and have been receiving chemo as a preventative measure
StarryRoo
in
Leukaemia CARE
6 years ago
Clinical Trial information
CLL specialist Dr. Kerry Rogers will present an important online or in person informational program focussing on Clinical Trials. This program will be streamed live online but you need to register. Register at cancer.osu.edu/JCFL in your browser or click this link https://cancer.osu.edu/patient-support
CLL specialist Dr. Kerry Rogers will present an important online or in person informational program focussing on Clinical Trials. This program will be streamed live online but you need to register. Register at cancer.osu.edu/JCFL in your browser or click this link https://cancer.osu.edu/patient-support
ThreeWs
in
CLL Support
6 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
It's Official! Curing Patients Is Bad for Business! Milton Packer describes the end result of profit-dominated drug development
Sobering reading from Milton Packer in Medscape Today [i]"Pharmaceutical companies are developing new drugs in only two therapeutic areas these days -- cancer and rare diseases. Why? These are the only therapeutic areas where exorbitant pricing is tolerated by payers.[/i] [i]: [/i] [i]Last week, things
Sobering reading from Milton Packer in Medscape Today [i]"Pharmaceutical companies are developing new drugs in only two therapeutic areas these days -- cancer and rare diseases. Why? These are the only therapeutic areas where exorbitant pricing is tolerated by payers.[/i] [i]: [/i] [i]Last week, things
AussieNeil
Partner
in
CLL Support
6 years ago
Ten days to watch, wait, worry? Campaign launch
A week on Monday, Please join our Watch Wait Worry campaign and help us to improve the support offered to patients on Watch and Wait. We want to see more patients living well on Watch and Wait by improving the supportive care patients are receiving and ensuring they are being signposted to further information
A week on Monday, Please join our Watch Wait Worry campaign and help us to improve the support offered to patients on Watch and Wait. We want to see more patients living well on Watch and Wait by improving the supportive care patients are receiving and ensuring they are being signposted to further information
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
What is the best first-line treatment combination for CLL?
I’m taking the liberty of cross posting this post I wrote from the UK CLL Facebook group. I’m trying to get my own head round what are the best first line treatments for CLL. Not least because I know that I’m obviously quite likely to need treatment at some point. I believe in the power of many
I’m taking the liberty of cross posting this post I wrote from the UK CLL Facebook group. I’m trying to get my own head round what are the best first line treatments for CLL. Not least because I know that I’m obviously quite likely to need treatment at some point. I believe in the power of many
AdrianUK
in
CLL Support
6 years ago
Monoclonal B Cell Lymphocytosis
Seeking some input on starting with MBL and then becoming CLL. Recent blood tests led to a diagnosis of MBL, and my count was 4,800. The Hematologist said a person isnt CLL until the count reaches 5,000. I also know that only 1 to 2 percent of MBL patients reach CLL per year, which is pretty low, but
Seeking some input on starting with MBL and then becoming CLL. Recent blood tests led to a diagnosis of MBL, and my count was 4,800. The Hematologist said a person isnt CLL until the count reaches 5,000. I also know that only 1 to 2 percent of MBL patients reach CLL per year, which is pretty low, but
wizzard166
in
CLL Support
6 years ago
Flair Trial
I was diagnosed with cll just before Christmas 2017 and have just had the second appointment with my haematologist and am now borderline for starting treatment which if my bloods deteriorate further, will be starting after my July appointment I have been offered a Clinical trial called Flair which is
I was diagnosed with cll just before Christmas 2017 and have just had the second appointment with my haematologist and am now borderline for starting treatment which if my bloods deteriorate further, will be starting after my July appointment I have been offered a Clinical trial called Flair which is
dandelup
in
CLL Support
6 years ago
Starving Cancer with Methionine Restriction -
Hello, This short video explains that cancers require Methionine to grow. Methionine is an Essential Amino Acid that only comes from food. It is in the highest amount in fish, chicken , meat and Dairy. It is not in as high amounts in non animal product foods. Thoughts? Nutritionfacts.org is an amazing
Hello, This short video explains that cancers require Methionine to grow. Methionine is an Essential Amino Acid that only comes from food. It is in the highest amount in fish, chicken , meat and Dairy. It is not in as high amounts in non animal product foods. Thoughts? Nutritionfacts.org is an amazing
Hoffy
in
CLL Support
6 years ago
Guidelines for Diagnosis, Indications for Treatment, Response Assessment and Supportive Management of Chronic Lymphocytic Leukemia
These new guidelines were just published today, but Blood Journal has them paywalled. 😬 Patients can request access to the paper, by emailing Blood and giving the title above... Let's swamp their offices with requests... 📬📬📬📬📬 [i]Patient Information[/i] [i]Although we are unable to provide answers
These new guidelines were just published today, but Blood Journal has them paywalled. 😬 Patients can request access to the paper, by emailing Blood and giving the title above... Let's swamp their offices with requests... 📬📬📬📬📬 [i]Patient Information[/i] [i]Although we are unable to provide answers
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
CAR-T coming to OSU Medical Center
Hi All, Having just returned from my 12 week Clinical Trial monitoring I got the first tangible hints that CAR-T (Chimeric Antigen Receptor – T cell) therapy is to become a reality at the James hospital at OSU Medical Center for CLL. I heard over a year ago that it was in the planning but while I was
Hi All, Having just returned from my 12 week Clinical Trial monitoring I got the first tangible hints that CAR-T (Chimeric Antigen Receptor – T cell) therapy is to become a reality at the James hospital at OSU Medical Center for CLL. I heard over a year ago that it was in the planning but while I was
ThreeWs
in
CLL Support
6 years ago
CLL patient & carer Information booklet; download using a QR code.
Have a little fun and try this novel way to access CLL information, pass it on. https://youtu.be/bb5L3glpXlY To help others get access to this information at diagnosis or when they visit the clinic you can download a poster here: https://drive.google.com/file/d/183vlJfrBVhSSlz9moLIbY41xT4oz7nAW/view
Have a little fun and try this novel way to access CLL information, pass it on. https://youtu.be/bb5L3glpXlY To help others get access to this information at diagnosis or when they visit the clinic you can download a poster here: https://drive.google.com/file/d/183vlJfrBVhSSlz9moLIbY41xT4oz7nAW/view
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
CLL confused
Hi everyone, I need some help. My husband who is now 82 was diagnosed 8 yrs ago and has been on watch and wait. He now needs chemo and will be offered chlorambucil within the next 2 weeks. We have been given all the paperwork and it is a bit frightening. He is worried about side effects given his age
Hi everyone, I need some help. My husband who is now 82 was diagnosed 8 yrs ago and has been on watch and wait. He now needs chemo and will be offered chlorambucil within the next 2 weeks. We have been given all the paperwork and it is a bit frightening. He is worried about side effects given his age
Pablo123
in
CLL Support
6 years ago
ET
A friend of mine has just been diagnosed with Essential Thrombocythemia a blood cancer, (or pre cancer). Does anyone know how, if at all, this relates to CLL or other blood cell mutation diseases? and what and when treatment is appropriate, beyond the usual W & W period.
A friend of mine has just been diagnosed with Essential Thrombocythemia a blood cancer, (or pre cancer). Does anyone know how, if at all, this relates to CLL or other blood cell mutation diseases? and what and when treatment is appropriate, beyond the usual W & W period.
RogerPinner
in
CLL Support
6 years ago
Son diagnosed with Chronic Lymphocytic Leukemia,
Update on my son , he had his blood work appointment a week ago , his WBC was 4.7 it's now 9.9, his hemoglobin is very good, platelet's are very good, bone and liver not so good, lit up in yellow, as caution, we are on a watch and see , and will be back in may for another blood test,.
Update on my son , he had his blood work appointment a week ago , his WBC was 4.7 it's now 9.9, his hemoglobin is very good, platelet's are very good, bone and liver not so good, lit up in yellow, as caution, we are on a watch and see , and will be back in may for another blood test,.
deters
in
CLL Support
6 years ago
Question about Sll/CLL
I am trying to figure out what the life expectancy is with Sll and CLL I’m 46 and was told I have sll a few weeks ago I have no symptoms. I have seen on the internet 2 things. Question 1. I have seen on the internet if you have a segment in chromosome 13 missing your prognosis is very good with a medium
I am trying to figure out what the life expectancy is with Sll and CLL I’m 46 and was told I have sll a few weeks ago I have no symptoms. I have seen on the internet 2 things. Question 1. I have seen on the internet if you have a segment in chromosome 13 missing your prognosis is very good with a medium
Ironj
in
CLL Support
6 years ago
New to this site
Hi everyone, Just found out about this site and I’m so happy to know I’m not alone. I was diagnosed with CLL sept 2016. Very early not even stage one but I was 40 y/o which is a little troubling. I haven’t heard much talk about marijuana as I live in a state where medical marijuana is allowed. I have
Hi everyone, Just found out about this site and I’m so happy to know I’m not alone. I was diagnosed with CLL sept 2016. Very early not even stage one but I was 40 y/o which is a little troubling. I haven’t heard much talk about marijuana as I live in a state where medical marijuana is allowed. I have
Pizzaboy
in
CLL Support
6 years ago
Clinical Trials for Blood Cancers: Webinar Wednesday, April 18, 2018 12:00 pm to 1:00 pm Eastern Time USA
How Can Participating in a Clinical Trial Help Me? http://links.leukemia-lymphoma.mkt7024.com/ctt?kn=6&ms=MzM3NjA0OTQS1&r=NzIwMTI5NTUzOTQzS0&b=0&j=MTI2MDU4NTE5MwS2&mt=1&rt=0 https://www.cancercoachlive.com/app/signup/LLS_PtEd_041818/formPage/0 The Leukemia & Lymphoma Society invites you to join a
How Can Participating in a Clinical Trial Help Me? http://links.leukemia-lymphoma.mkt7024.com/ctt?kn=6&ms=MzM3NjA0OTQS1&r=NzIwMTI5NTUzOTQzS0&b=0&j=MTI2MDU4NTE5MwS2&mt=1&rt=0 https://www.cancercoachlive.com/app/signup/LLS_PtEd_041818/formPage/0 The Leukemia & Lymphoma Society invites you to join a
lankisterguy
Volunteer
in
CLL Support
6 years ago
Marathon Des Sables Morocco 6th -16th April 2018
Good afternoon Emily my youngest daughter will be running 6 marathons in 6 days ,self supported, across the Sahara desert to raise funds for MPN Voice , who do such exemplary work for people like me who have been diagnosed with myelofibrosis and others with Myeloproliferative Neoplasms. For details
Good afternoon Emily my youngest daughter will be running 6 marathons in 6 days ,self supported, across the Sahara desert to raise funds for MPN Voice , who do such exemplary work for people like me who have been diagnosed with myelofibrosis and others with Myeloproliferative Neoplasms. For details
Kevbroz
in
MPN Voice
6 years ago
I am confused on what we can post on this site.
I feel bad for all people with Cll Leukemia. I sometimes posted things that were natural should we just never post anything like that. When I see someone post something that is natural it makes me feel better that maybe one of us will be healed from God naturally. I feel really bad after someone tells
I feel bad for all people with Cll Leukemia. I sometimes posted things that were natural should we just never post anything like that. When I see someone post something that is natural it makes me feel better that maybe one of us will be healed from God naturally. I feel really bad after someone tells
hmo1
in
CLL Support
6 years ago
1
...
97
98
99
100
Next page
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1939 results
MPN Voice
789 results
Leukaemia CARE
168 results
View top 10 communities
Sort by
Most Relevant
Newest