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XMAS WISHES FROM DOWN UNDER.
MY FIRST POST. I AM A VERY YOUNG 67 YEAR OLD NUTTY NANNIE FROM NEW ZEALAND. I HAVE BEEN FOLLOWING THIS SITE FOR THE PAST FEW MONTHS. I HAVE FOUND THE INFORMATION AND THE SHARING OF PERSONAL EXPERIENCES A REAL BENEFIT. I WAS DIAGNOSED WITH CLL 30 MONTHS AGO. OWING TO MY INCREASING WHITE CELL COUNT
MY FIRST POST. I AM A VERY YOUNG 67 YEAR OLD NUTTY NANNIE FROM NEW ZEALAND. I HAVE BEEN FOLLOWING THIS SITE FOR THE PAST FEW MONTHS. I HAVE FOUND THE INFORMATION AND THE SHARING OF PERSONAL EXPERIENCES A REAL BENEFIT. I WAS DIAGNOSED WITH CLL 30 MONTHS AGO. OWING TO MY INCREASING WHITE CELL COUNT
nuttynannie1947
in
CLL Support
10 years ago
Blood counts very poor, soon to start BR, and unsure whether to have jabs? (my first attempt to post this message only half worked)
Hi everyone, Thanks for all your responses to my post 3 weeks ago. The blood test results on 10th December were confusing to say the least - WBC had increased from 81.6 to 123.5 since the previous tests at the end of November, while neutrophils, HB and platelets were all slightly improved. My consultant
Hi everyone, Thanks for all your responses to my post 3 weeks ago. The blood test results on 10th December were confusing to say the least - WBC had increased from 81.6 to 123.5 since the previous tests at the end of November, while neutrophils, HB and platelets were all slightly improved. My consultant
Ruhi9
in
CLL Support
10 years ago
FLAIR Trial - ErnieUK Baseline Bloods before FCR
As mentioned in my last post, my final baseline bloods just before starting the FCR treatment (please excuse me the underscore characters here to try to make a simple table):
_______________OCT____NOV____DEC_______Units_____Normal Range
Hg___________11.4_____10.6___10.8________g/dL_____Normal
As mentioned in my last post, my final baseline bloods just before starting the FCR treatment (please excuse me the underscore characters here to try to make a simple table):
_______________OCT____NOV____DEC_______Units_____Normal Range
Hg___________11.4_____10.6___10.8________g/dL_____Normal
Ernest2
in
CLL Support
10 years ago
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Dr. O'Brien on Trial Design, CT scans and the one and only place for FCR.
Friends, Please check out my blog: http://bkoffman.blogspot.com to hear my last interview from ASCO 2014: Dr. O'Brien Discusses Improved Trial Designs, CT Scans and the role of Chemo-immunotherapy In Frontline Therapy. And if you haven't yet, and have CLL, please complete the survey at https://cllsociety.questionpro.com
Friends, Please check out my blog: http://bkoffman.blogspot.com to hear my last interview from ASCO 2014: Dr. O'Brien Discusses Improved Trial Designs, CT Scans and the role of Chemo-immunotherapy In Frontline Therapy. And if you haven't yet, and have CLL, please complete the survey at https://cllsociety.questionpro.com
bkoffman
CLL CURE Hero
in
CLL Support
10 years ago
Bone Marrow Exam
Hope the following might help anyone faced with a Bone Marrow Exam for the first time. Just had my first one recently as part of the baseline tests for the CLL10 "FLAIR" trial, I've signed up to. Like some of you I've heard descriptions in the past of Bone Marrow Biopsies BMB that were difficult experiences
Hope the following might help anyone faced with a Bone Marrow Exam for the first time. Just had my first one recently as part of the baseline tests for the CLL10 "FLAIR" trial, I've signed up to. Like some of you I've heard descriptions in the past of Bone Marrow Biopsies BMB that were difficult experiences
Ernest2
in
CLL Support
10 years ago
Atypical CLL
My Dad was diagnosed with CLL but had no symptoms for about 11 years. However, things moved quickly when symptoms did appear. He was started on FCR but it was not as effective as the Dr had hoped. (He had 3 doses.) he then had Rituximab and Bendamustine but again, his lymph nodes and spleen are still
My Dad was diagnosed with CLL but had no symptoms for about 11 years. However, things moved quickly when symptoms did appear. He was started on FCR but it was not as effective as the Dr had hoped. (He had 3 doses.) he then had Rituximab and Bendamustine but again, his lymph nodes and spleen are still
jerryuk
in
CLL Support
10 years ago
CLL with pleural effusions and Ibrutinib
I have had bi-lateral pleural effusions with my CLL since diagnosis earlier this year. FCR had to be stopped. I have recently been on Ibrutinib for two months. Is there any evidence that over time, Ibrutinib will resolve the effusion problem ? David.
I have had bi-lateral pleural effusions with my CLL since diagnosis earlier this year. FCR had to be stopped. I have recently been on Ibrutinib for two months. Is there any evidence that over time, Ibrutinib will resolve the effusion problem ? David.
Haileybury
in
CLL Support
10 years ago
CLL and Fatty Acids
Hi. My husband has CLL. He has had FCR ending in February and is in (partial) remission. His white cell counts are low n = 1.4 l=0.4 and lymphocytes are stable so far so mostly good news. we are getting on with life. However I just found this link http://www.ncbi.nlm.nih.gov/m/pubmed/16473553/ and wondered
Hi. My husband has CLL. He has had FCR ending in February and is in (partial) remission. His white cell counts are low n = 1.4 l=0.4 and lymphocytes are stable so far so mostly good news. we are getting on with life. However I just found this link http://www.ncbi.nlm.nih.gov/m/pubmed/16473553/ and wondered
Hidden
in
CLL Support
10 years ago
The Big C....
Morning all, just wanted to ask if there is anyone who is in the same boat and can offer any explanation apart from " it's the luck of the draw" .... I was diagnosed with CLL at 39, had FCR sailed through it, was in remission for 18 months and then it came back with a vengeance !!! R-chop for 2 cycles
Morning all, just wanted to ask if there is anyone who is in the same boat and can offer any explanation apart from " it's the luck of the draw" .... I was diagnosed with CLL at 39, had FCR sailed through it, was in remission for 18 months and then it came back with a vengeance !!! R-chop for 2 cycles
JanetG
in
CLL Support
10 years ago
What kind of research can we trust?
How can we trust that drugs recommended by our doctors are what's indeed best for us? While being put onto a Watch and Wait 'treatment plan' can be stressful after receiving a cancer diagnosis, at least we can be reassured that in that case, studies have shown that non-treatment will give us a better
How can we trust that drugs recommended by our doctors are what's indeed best for us? While being put onto a Watch and Wait 'treatment plan' can be stressful after receiving a cancer diagnosis, at least we can be reassured that in that case, studies have shown that non-treatment will give us a better
AussieNeil
Partner
in
CLL Support
10 years ago
Lab Results Explained
One of my favorite people in the world is Susan Leclair PhD, who has, for years, demystified lab results for us patients. Now we are producing an ongoing video series with her. Please watch, send in questions, and tell others. Patient Power paid for this ourselves, but if we can generate viewership –
One of my favorite people in the world is Susan Leclair PhD, who has, for years, demystified lab results for us patients. Now we are producing an ongoing video series with her. Please watch, send in questions, and tell others. Patient Power paid for this ourselves, but if we can generate viewership –
andrewschorr
in
CLL Support
10 years ago
Purpura rash with normal platelets
Just trying to get a take on this. Had ITP 6 months before starting FCR Chemo for CLL. Platelets were up 'n' down during chemo to as low as 38. That was two years ago and still platelets are up 'n' down. In August they were 152 but still in range and no concerns. In September whilst on holiday,
Just trying to get a take on this. Had ITP 6 months before starting FCR Chemo for CLL. Platelets were up 'n' down during chemo to as low as 38. That was two years ago and still platelets are up 'n' down. In August they were 152 but still in range and no concerns. In September whilst on holiday,
Nicebaps
in
ITP Support Association
10 years ago
First day on IBRUTINIB
I feel very fortunate that after 2 courses of FCR which had to be stopped (pleural effusions, bone marrow and neutrophil problems), I have been referred to a CLL specialist in Oxford who has agreed that I am a suitable case for treatment with Ibrutinib on a named person basis. There can't be too many
I feel very fortunate that after 2 courses of FCR which had to be stopped (pleural effusions, bone marrow and neutrophil problems), I have been referred to a CLL specialist in Oxford who has agreed that I am a suitable case for treatment with Ibrutinib on a named person basis. There can't be too many
Haileybury
in
CLL Support
10 years ago
Video, Dr George Follows discusses CLL treatment choices and side effects
Different drug combinations have different toxicity profiles, associated complications and efficacy. Requiring lengthy discussion between patients and their doctor and treatment at a centre experienced in their delivery and care of patients being treated with them. Q1) many patients have heard about
Different drug combinations have different toxicity profiles, associated complications and efficacy. Requiring lengthy discussion between patients and their doctor and treatment at a centre experienced in their delivery and care of patients being treated with them. Q1) many patients have heard about
HAIRBEAR_UK
Administrator
in
CLL Support
10 years ago
UK 'OK to ask' patient empowerment campaign encourages patients to take part in research & FLAIR 1st line CLL trial commences + others.
Never has there been a time when so many novel therapies are available in clinical trial in the UK to treat CLL. "The National Institute for Health Research (NIHR) launched a campaign in May this year entitled "OK to Ask", encouraging patients to ask their doctor about clinical-research opportunities
Never has there been a time when so many novel therapies are available in clinical trial in the UK to treat CLL. "The National Institute for Health Research (NIHR) launched a campaign in May this year entitled "OK to Ask", encouraging patients to ask their doctor about clinical-research opportunities
HAIRBEAR_UK
Administrator
in
CLL Support
10 years ago
Sore mouth and tongue
Diagnosed CLL 2009 then needed the full chemo FCR 2010. Hospitalised twice afterwards with a chest fungal infection but since then,3 years + down the line, my bloods have been satisfactory.My Haematologist even put me on 6 month visits this April ! Good news but over 3 months ago i started with a sore
Diagnosed CLL 2009 then needed the full chemo FCR 2010. Hospitalised twice afterwards with a chest fungal infection but since then,3 years + down the line, my bloods have been satisfactory.My Haematologist even put me on 6 month visits this April ! Good news but over 3 months ago i started with a sore
defconSkipton
in
CLL Support
10 years ago
CLL Medical Alert Tags
Hi Everybody. First thanks for all your great posts, and apologies I've been "lurking" too much recently and not posting. One minor issue just come up for me, I'd be interested what people's views are: The very large, and now global company I work for requires you to use a pass card to get in and
Hi Everybody. First thanks for all your great posts, and apologies I've been "lurking" too much recently and not posting. One minor issue just come up for me, I'd be interested what people's views are: The very large, and now global company I work for requires you to use a pass card to get in and
Ernest2
in
CLL Support
10 years ago
CLL specialists ?
My FCR treatment has been stopped after 2 courses due to a new problem - fluid on my lungs. I am awaiting another bone marrow biopsy and CT scan. Depending on what my haematologist has to say in due course, I may request another opinion with a CLL specialist. I am in Hereford. Does anyone know of
My FCR treatment has been stopped after 2 courses due to a new problem - fluid on my lungs. I am awaiting another bone marrow biopsy and CT scan. Depending on what my haematologist has to say in due course, I may request another opinion with a CLL specialist. I am in Hereford. Does anyone know of
Haileybury
in
CLL Support
10 years ago
Ibrutinib as a monotherapy
Hi, I've just joined this forum and have read most of your posts and found them very useful. I have CLL/SLL and after 6 cycles of FCR (which gave me just over a year's remission) I'm now two weeks into starting on Ibrutinib as a mono therapy. So far no side effects. Is anybody else in the UK (as the
Hi, I've just joined this forum and have read most of your posts and found them very useful. I have CLL/SLL and after 6 cycles of FCR (which gave me just over a year's remission) I'm now two weeks into starting on Ibrutinib as a mono therapy. So far no side effects. Is anybody else in the UK (as the
SycamoreN
in
CLL Support
10 years ago
Low neutrophils
Hello everyone. I have been reading posts daily since joining and find the community a good resource. Thank you. I have been on W/W since September 2012 and have remained stable since then. However, last February I had bowel, sacrum and sciatic nerve pain. My GP did several tests but they all came back
Hello everyone. I have been reading posts daily since joining and find the community a good resource. Thank you. I have been on W/W since September 2012 and have remained stable since then. However, last February I had bowel, sacrum and sciatic nerve pain. My GP did several tests but they all came back
Hidden
in
CLL Support
10 years ago
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