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SCT just got real.
I had my bone marrow trephine 2 weeks ago and, having not recieved a follow up appointment, decided to call the hospital this morning. Imagine my surprise when the nurse not only tells me that I have a date for the pre transplant tests, but an admission date for the SCT too. All became very real suddenly
I had my bone marrow trephine 2 weeks ago and, having not recieved a follow up appointment, decided to call the hospital this morning. Imagine my surprise when the nurse not only tells me that I have a date for the pre transplant tests, but an admission date for the SCT too. All became very real suddenly
KAS8
in
CLL Support
6 years ago
Our new Living well series
Hi all, This week we officially launched our latest booklet, Living well with AML. It can be downloaded on the Leukaemia Care website and you can order free copies too. Later this year, we will launch Living well with CML, Living well with CLL and Living well with ALL. Are there any burning questions
Hi all, This week we officially launched our latest booklet, Living well with AML. It can be downloaded on the Leukaemia Care website and you can order free copies too. Later this year, we will launch Living well with CML, Living well with CLL and Living well with ALL. Are there any burning questions
NicoleLeukaemiaCare
in
Leukaemia Support
6 years ago
Newcomer
Hi everyone I've recently been diagnosed with cll and tomorrow..I have my ct scan...I can't help feeling I'm going to die..it came as a shock as I only went for cholesterol test. My doctor ordered more tests and within a week I had marrow biopsy and results. I have no real symptoms.. and work really
Hi everyone I've recently been diagnosed with cll and tomorrow..I have my ct scan...I can't help feeling I'm going to die..it came as a shock as I only went for cholesterol test. My doctor ordered more tests and within a week I had marrow biopsy and results. I have no real symptoms.. and work really
Feelsolow
in
CLL Support
6 years ago
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MPN New Zealand Information and Support and MPN Australia & NZ Myeloproliferative Neoplasm Support Community - Facebook Groups
Hi everyone, For those of you on here that are are in Australia and New Zealand I just wanted to let you know that are now two great Facebook Groups for people with MPNs, survivors of MPNs, and their families and carers. They are closed groups so only members can see posts. Some of you may already know
Hi everyone, For those of you on here that are are in Australia and New Zealand I just wanted to let you know that are now two great Facebook Groups for people with MPNs, survivors of MPNs, and their families and carers. They are closed groups so only members can see posts. Some of you may already know
Wentry
in
MPN Voice
6 years ago
LIVE and OBSERVE
As a CLL patient the past 6 years and reading this encouraging and productive forum the past 3 years, I keep hearing the words WATCH and WAIT. It's about time everyone with this blood disorder whether you are in treatment or not have the medical profession embrace 3 better words LIVE and OBSERVE for
As a CLL patient the past 6 years and reading this encouraging and productive forum the past 3 years, I keep hearing the words WATCH and WAIT. It's about time everyone with this blood disorder whether you are in treatment or not have the medical profession embrace 3 better words LIVE and OBSERVE for
bacimio
in
CLL Support
6 years ago
6-MP drug
Specifically it is used to treat acute
lymphocytic
leukemia
(ALL), chronic myeloid leukemia (CML), Crohn's disease, and ulcerative colitis.
Specifically it is used to treat acute
lymphocytic
leukemia
(ALL), chronic myeloid leukemia (CML), Crohn's disease, and ulcerative colitis.
mjk98
in
PBC Foundation
6 years ago
which Chronic leukemia
is worse? none is worse, right? different, but the same in that sense, right? Also, anyone a good CML forum? last Dr wanted to treat CLL, he missed the CML. second, this time a specialist in both, said no, we'll treat the CML. Fyi, my CML blasts are, by bmb, 2%. Don't you think I should W&W that
is worse? none is worse, right? different, but the same in that sense, right? Also, anyone a good CML forum? last Dr wanted to treat CLL, he missed the CML. second, this time a specialist in both, said no, we'll treat the CML. Fyi, my CML blasts are, by bmb, 2%. Don't you think I should W&W that
tedrog
in
CLL Support
6 years ago
Looking for info on:
Does anyone have information on having Chronic
lymphocytic
leukemia
or MBL and also been diagnosed with autoimmune hepatitis (AIH)?
Does anyone have information on having Chronic
lymphocytic
leukemia
or MBL and also been diagnosed with autoimmune hepatitis (AIH)?
4Patricia
in
CLL Support
6 years ago
So Very Blessed
Good Morning fellow CLL sufferers , I have recently received the results from my latest six month blood work and exam. My white count only went from 29,000 to 33,000 so no where near doubling. Doc said my other numbers are all still looking good. He had told me six months ago that we might be looking
Good Morning fellow CLL sufferers , I have recently received the results from my latest six month blood work and exam. My white count only went from 29,000 to 33,000 so no where near doubling. Doc said my other numbers are all still looking good. He had told me six months ago that we might be looking
BlueGillfisherman
in
CLL Support
6 years ago
Prefibrotic Primary Myelofibrosis
Has anyone been diagnosed or know how quickly prefibrotic Primary Myelofibrosis will develop to Myelofibrosis. I am new here and been diagnosed couple days ago....I am trying not to panic but ending up crying all the time. Need to find some positivity in my life soon. Sorry for very negative post
Has anyone been diagnosed or know how quickly prefibrotic Primary Myelofibrosis will develop to Myelofibrosis. I am new here and been diagnosed couple days ago....I am trying not to panic but ending up crying all the time. Need to find some positivity in my life soon. Sorry for very negative post
Elab
in
MPN Voice
6 years ago
IMPORTANT Update on Developments in UK regarding Access to Ibrutinib for R/R patients in line with NICE.
*Note this is an unlocked post*
There have been several developments since the last update. As of this morning, this is the current situation. * There is now a petition - please circulate to your family and friends https://petition.parliament.uk/petitions/220038 * In an answer to Parliamentary
*Note this is an unlocked post*
There have been several developments since the last update. As of this morning, this is the current situation. * There is now a petition - please circulate to your family and friends https://petition.parliament.uk/petitions/220038 * In an answer to Parliamentary
Jm954
Administrator
in
CLL Support
6 years ago
MF (an acronym I often used, It'll never mean the same again!).
So finally I have gotten round to writing this post, it's about the third attempt! the last one got most the way through and my finger twitched left on the magic mouse and poof it was all gone :( Ok, so Monday was the results of my BMB. Unfortunately, they have confirmed that I have Myelofibrosis! "Low
So finally I have gotten round to writing this post, it's about the third attempt! the last one got most the way through and my finger twitched left on the magic mouse and poof it was all gone :( Ok, so Monday was the results of my BMB. Unfortunately, they have confirmed that I have Myelofibrosis! "Low
P-O-T-S
in
MPN Voice
6 years ago
Need Help Understanding New Gene Mutation in CLL/SLL
Hello to everyone! Thanks to all for providing a safe, positive place to read about like souls sharing this same nasty journey. Every time I feel a cancer panic coming on, this is the first place I turn for comfort. I am a long time lurker but first time poster. I was first diagnosed with CLL/SLL in
Hello to everyone! Thanks to all for providing a safe, positive place to read about like souls sharing this same nasty journey. Every time I feel a cancer panic coming on, this is the first place I turn for comfort. I am a long time lurker but first time poster. I was first diagnosed with CLL/SLL in
PCara90
in
CLL Support
6 years ago
The Bloodline with LLS ------------------------------------ A PODCAST FOR PATIENTS AND CAREGIVERS
http://www.lls.org/ [i]( a USA base organization but the links and audio programs etc. should work world wide- Len)[/i] Being diagnosed with a blood cancer can make you feel like you are alone. The Bloodline with LLS is here to remind you that after a diagnosis comes hope. Listen in as Alicia Patten
http://www.lls.org/ [i]( a USA base organization but the links and audio programs etc. should work world wide- Len)[/i] Being diagnosed with a blood cancer can make you feel like you are alone. The Bloodline with LLS is here to remind you that after a diagnosis comes hope. Listen in as Alicia Patten
lankisterguy
Volunteer
in
CLL Support
6 years ago
International Prognostic Index Calculator
Take the test: https://www.mdcalc.com/international-prognostic-index-chronic-
lymphocytic
-
leukemia
-cll-ipi Danish study: http://www.bloodjournal.org/content/bloodjournal/128/17/2181.full.pdf
Take the test: https://www.mdcalc.com/international-prognostic-index-chronic-
lymphocytic
-
leukemia
-cll-ipi Danish study: http://www.bloodjournal.org/content/bloodjournal/128/17/2181.full.pdf
AdrianUK
in
CLL Support
6 years ago
New Clinical Trial of Ibrutinib + Venetoclax for people relapsing on Ibrutinib
Yesterday I started a new clinical trial at UCSD for people that have relapsed on Ibrutinib. I had been a part of the RESONATE trial and have been on Ibrutinib for 4 1/2 years. Early this year began a trend of increasing ALC and enlarging lymph nodes. A next Gen Sequencing test showed a mutation in
Yesterday I started a new clinical trial at UCSD for people that have relapsed on Ibrutinib. I had been a part of the RESONATE trial and have been on Ibrutinib for 4 1/2 years. Early this year began a trend of increasing ALC and enlarging lymph nodes. A next Gen Sequencing test showed a mutation in
Teegolf47
in
CLL Support
6 years ago
Gazyva (obinutuzumab) treatment
My Doctor is recommending Gazyva (obinutuzumab) treatment for my CLL. I heard that some people had good outcomes. How long would one expect to be Cancer free after treatment before a relapse? (Example 1 year?, 2 years?, 3 years, etc.) Any information will be helpful. Thanks
My Doctor is recommending Gazyva (obinutuzumab) treatment for my CLL. I heard that some people had good outcomes. How long would one expect to be Cancer free after treatment before a relapse? (Example 1 year?, 2 years?, 3 years, etc.) Any information will be helpful. Thanks
WinJ3
in
CLL Support
6 years ago
Getting better
I have been too slow in sharing good news. Last week I learned that my bone marrow biopsy done 28 days after getting my CAR-T cells showed no copies of the DNA signature of my CLL- this is at least one log lower than the usual MRD testing by flow cytometry finding one cell in 100,000. More details on
I have been too slow in sharing good news. Last week I learned that my bone marrow biopsy done 28 days after getting my CAR-T cells showed no copies of the DNA signature of my CLL- this is at least one log lower than the usual MRD testing by flow cytometry finding one cell in 100,000. More details on
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Ibrutinib and CLL
Prognostic Factors for Complete Response to Ibrutinib in Patients With Chronic
Lymphocytic
Leukemia
: https://jamanetwork.com/journals/jamaoncology/fullarticle/2673073?widget=personalizedcontent&previousarticle=2673838
Prognostic Factors for Complete Response to Ibrutinib in Patients With Chronic
Lymphocytic
Leukemia
: https://jamanetwork.com/journals/jamaoncology/fullarticle/2673073?widget=personalizedcontent&previousarticle=2673838
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
6 years ago
My cancer is in remission – what does this mean?
[i]"In the 1970s, only one cancer patient in three made it through the first five years after diagnosis. Today, this figure is around 70%, and exceeds 85% for some cancers that were previously fatal. So, remission might mean cure but we only know that over time." [/i] So concludes Ian Olver, Director
[i]"In the 1970s, only one cancer patient in three made it through the first five years after diagnosis. Today, this figure is around 70%, and exceeds 85% for some cancers that were previously fatal. So, remission might mean cure but we only know that over time." [/i] So concludes Ian Olver, Director
AussieNeil
Partner
in
CLL Support
6 years ago
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