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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
FDA Approves Venetoclax (VENCLEXTA) For CLL or SLL with or without 17p deletion, who have received at least one prior therapy
FDA Approves Venetoclax (VENCLEXTA) For Chronic Lymphocytic Leukemia or Small Lymphocytic Leukemia http://support.lymphoma.org/site/MessageViewer?em_id=2683.0&dlv_id=5995 On June 8, 2018, the U.S. Food and Drug Administration (FDA) approved the use of venetoclax (VENCLEXTA) for the treatment of
FDA Approves Venetoclax (VENCLEXTA) For Chronic Lymphocytic Leukemia or Small Lymphocytic Leukemia http://support.lymphoma.org/site/MessageViewer?em_id=2683.0&dlv_id=5995 On June 8, 2018, the U.S. Food and Drug Administration (FDA) approved the use of venetoclax (VENCLEXTA) for the treatment of
lankisterguy
Volunteer
in
CLL Support
6 years ago
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
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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
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
ASH 2017: Dr. Richard Furman on the importance of MCL-1 in CLL (chronic lymphocytic leukemia)
Just watched a video on MCL-1 and thought our group might be interested (if not already aware!). From the CLL Society website: As good as venetoclax is as a single agent, there are now many studies that show even more remarkable responses occur when it is used in combination with ibrutinib or rituximab
Just watched a video on MCL-1 and thought our group might be interested (if not already aware!). From the CLL Society website: As good as venetoclax is as a single agent, there are now many studies that show even more remarkable responses occur when it is used in combination with ibrutinib or rituximab
hsouter
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
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
High GGT post treatment for Acute Myeloid Leukaemia
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hidden
in
British Liver Trust
6 years ago
Managing the Complications of Chronic Lymphocytic Leukemia (CLL) Online Program by The CancerCare Education Department (USA)
We appreciate your participation in Managing the Complications of Chronic Lymphocytic Leukemia (CLL), which took place on May 17. We hope you found this workshop informative and look forward to your feedback. If you were not able to attend this workshop, it is available on telephone replay 24 hours a
We appreciate your participation in Managing the Complications of Chronic Lymphocytic Leukemia (CLL), which took place on May 17. We hope you found this workshop informative and look forward to your feedback. If you were not able to attend this workshop, it is available on telephone replay 24 hours a
lankisterguy
Volunteer
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
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
Stem cell transplant outcomes
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
jane13
in
MPN Voice
6 years ago
Letter to my MP regarding funding of Ibrutinib
Dear Mrs Hobhouse, I am a cancer patient and under treatment from the RUH since 2006 when I was first diagnosed with CLL. The disease is a slowly progressing one, and in 2010 after four years of ‘watch and wait’ I had six months of chemotherapy, and then another six months of chemotherapy in 2015. Last
Dear Mrs Hobhouse, I am a cancer patient and under treatment from the RUH since 2006 when I was first diagnosed with CLL. The disease is a slowly progressing one, and in 2010 after four years of ‘watch and wait’ I had six months of chemotherapy, and then another six months of chemotherapy in 2015. Last
Ruhi9
in
CLL Support
6 years ago
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