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Remission over .... venetoclax (&R) here we come
After 4 years of remission following FCR we heard yesterday that my husband’s remission is over. We had been suspecting this for about 6 months - the blood counts were going in the wrong direction, a chest infection and a nasty bout of pneumonia being the clues. His consultant has recommended venetoclax
After 4 years of remission following FCR we heard yesterday that my husband’s remission is over. We had been suspecting this for about 6 months - the blood counts were going in the wrong direction, a chest infection and a nasty bout of pneumonia being the clues. His consultant has recommended venetoclax
Fowey2009
in
CLL Support
5 years ago
MRD-U Baby your one of four in two million!
So had a consultation with the amazing Prof Hillmen who is based in Leeds, but occasionally sees patients in Harley Street. He is great as a second opinion and to talk about odd things or decision points with. He explained that one of the tests that had been done in my bone marrow had a sensitivity
So had a consultation with the amazing Prof Hillmen who is based in Leeds, but occasionally sees patients in Harley Street. He is great as a second opinion and to talk about odd things or decision points with. He explained that one of the tests that had been done in my bone marrow had a sensitivity
AdrianUK
in
CLL Support
5 years ago
3 years since starting chemo ...son to do Iron Man!
I'm constantly dipping into this forum but sometimes it feels hard to read stories of people newly diagnosed with CLL...it makes the trauma that we've been through come flooding back... 3 years ago this week I started FCR and it is this weekend that my son Dan takes part in an Iron Man (Bolton). He has
I'm constantly dipping into this forum but sometimes it feels hard to read stories of people newly diagnosed with CLL...it makes the trauma that we've been through come flooding back... 3 years ago this week I started FCR and it is this weekend that my son Dan takes part in an Iron Man (Bolton). He has
Bethan49
in
CLL Support
5 years ago
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The CLL Society Tribune: full of research, news, advice, art and sharing
Heading home from lecturing in Germany. Very proud of this quarter's CLL Society Tribune: https://cllsociety.org/quarter-2-2019-volume-5-issue-2/ this quarter. I have an interview with Dr. Shanafelt, the lead on the ECOG trial that showed the superiority of Ibrutinib over FCR in nearly all frontline
Heading home from lecturing in Germany. Very proud of this quarter's CLL Society Tribune: https://cllsociety.org/quarter-2-2019-volume-5-issue-2/ this quarter. I have an interview with Dr. Shanafelt, the lead on the ECOG trial that showed the superiority of Ibrutinib over FCR in nearly all frontline
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Hi everyone who had FCR chemo
I am to have it for the first time, is it likely to have side effects when I will get back home after the drip ? I live alone, how did You feel ?
I am to have it for the first time, is it likely to have side effects when I will get back home after the drip ? I live alone, how did You feel ?
Ankakoza
in
CLL Support
5 years ago
CLL Society Tribune!
Welcome to the Second 2019 Issue of The CLL Society Tribune. https://cllsociety.org/quarter-2-2019-volume-5-issue-2/?utm_source=CLL+Tribune+Q2+2019&utm_campaign=Quarter+2+2019%3A+Volume+5+Issue+2&utm_medium=email Dear Friends and Supporters of the CLL Society. Welcome to the growing and evolving
Welcome to the Second 2019 Issue of The CLL Society Tribune. https://cllsociety.org/quarter-2-2019-volume-5-issue-2/?utm_source=CLL+Tribune+Q2+2019&utm_campaign=Quarter+2+2019%3A+Volume+5+Issue+2&utm_medium=email Dear Friends and Supporters of the CLL Society. Welcome to the growing and evolving
lankisterguy
Volunteer
in
CLL Support
5 years ago
Chimeric antigen receptor-modified T cell therapy in chronic lymphocytic leukemia
[i]Journal of Hematology & Oncology, November 2018[/i] CAR-T therapy, a promising adoptive T cell immunotherapy, has become more and more important in the treatment of CLL. In the last 2 years, enormous progress has been witnessed in CAR-T therapy for CLL. However, no comprehensive review had been reported
[i]Journal of Hematology & Oncology, November 2018[/i] CAR-T therapy, a promising adoptive T cell immunotherapy, has become more and more important in the treatment of CLL. In the last 2 years, enormous progress has been witnessed in CAR-T therapy for CLL. However, no comprehensive review had been reported
Jm954
Administrator
in
CLL Support
5 years ago
Move over MRD Negative and make way for uMRD - Undetectable Minimal Residual Disease
As Dr Brian Koffman mentioned here: https://healthunlocked.com/cllsupport/posts/141000734/eha part of his contribution to the European Hematology Association (EHA) 2019 Amsterdam congress https://ehaweb.org was as a panel member on a satellite event sponsored by the MRD Testing Collaborative, namely
As Dr Brian Koffman mentioned here: https://healthunlocked.com/cllsupport/posts/141000734/eha part of his contribution to the European Hematology Association (EHA) 2019 Amsterdam congress https://ehaweb.org was as a panel member on a satellite event sponsored by the MRD Testing Collaborative, namely
AussieNeil
Partner
in
CLL Support
5 years ago
POST BMT 1-Year & 7 Months, BOY OH BOY!!!
“Ring the bells that still can ring Forget your perfect offering There is a crack, a crack in everything That’s how the light gets in.” Leonard Cohen “Anthem,” The Future album 1992 It has been far to long since my last post but boy have we been through the ringer!! I do want to apologize for
“Ring the bells that still can ring Forget your perfect offering There is a crack, a crack in everything That’s how the light gets in.” Leonard Cohen “Anthem,” The Future album 1992 It has been far to long since my last post but boy have we been through the ringer!! I do want to apologize for
NMMP
in
CLL Support
5 years ago
FCR VS BR
My father's cytogenetics test shows he's trisomy 12. Zap 70 negative CD 38 positive 45% The oncologist has suggested BR. My father is physically fit 57 years old. Apart from mild fatigue and lymphodentpathy he's fine. I've read on this forum FCR give longer remission. But there's a greater risk of
My father's cytogenetics test shows he's trisomy 12. Zap 70 negative CD 38 positive 45% The oncologist has suggested BR. My father is physically fit 57 years old. Apart from mild fatigue and lymphodentpathy he's fine. I've read on this forum FCR give longer remission. But there's a greater risk of
Haider98
in
CLL Support
5 years ago
Emotional at 5 months FCR UK
New here Yeah. Thought it would be a breeze. I’m 60. Whoo. My emotions are all over the place. I’m doing well on all “counts” but as a gay man I don’t think my friends quite understand. Everything in the past is coming into my mind like cinema. My first boyfriend died of AIDS so memories are not comfortable.I
New here Yeah. Thought it would be a breeze. I’m 60. Whoo. My emotions are all over the place. I’m doing well on all “counts” but as a gay man I don’t think my friends quite understand. Everything in the past is coming into my mind like cinema. My first boyfriend died of AIDS so memories are not comfortable.I
Gaday
in
CLL Support
5 years ago
Good News
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
dandelup
in
CLL Support
5 years ago
FCR or BR?
Hi all, My dad is 69 years old and he has CLL. His blood values are oke but his lymphs are very big so he needs to be treated. His IGHV is unmutated and tp53 also unmutated. We visited two hospitals, one says FCR and the other one says BR. We really don’t know what to do. Any advice is welcome! Thanks
Hi all, My dad is 69 years old and he has CLL. His blood values are oke but his lymphs are very big so he needs to be treated. His IGHV is unmutated and tp53 also unmutated. We visited two hospitals, one says FCR and the other one says BR. We really don’t know what to do. Any advice is welcome! Thanks
TOFK
in
CLL Support
5 years ago
Pulse Tinnitus
Age 63. 2002 Oral
Fludarabine
. June 04 and Jan 05 4 weeks of Rituxan. Oct 05/Feb 06 monthly Rituxan and Chlorambucil. July/Dec 08 RFC. June 2012 Bendamustine and Ofatumumab, but changed to Rituxan. 2014 to date IVIG. Jan 2017 Ibrutinib.
Age 63. 2002 Oral
Fludarabine
. June 04 and Jan 05 4 weeks of Rituxan. Oct 05/Feb 06 monthly Rituxan and Chlorambucil. July/Dec 08 RFC. June 2012 Bendamustine and Ofatumumab, but changed to Rituxan. 2014 to date IVIG. Jan 2017 Ibrutinib.
RobertCLL
in
British Tinnitus Association
5 years ago
CLL treatment options
I have CLL diagnosed 1 year back. Till recently on watch and wait. Now doctors started FCR chemotherapy because of decrease in Hb. One cycle given. FISH shows Del 13q14.3 30% and 14q32 IGH gene 86% Hypermutated IGVH. Age 62 years also Hypertension and Diabetes. Hb 5.9 TLC 368000 Platelets 68000. Please
I have CLL diagnosed 1 year back. Till recently on watch and wait. Now doctors started FCR chemotherapy because of decrease in Hb. One cycle given. FISH shows Del 13q14.3 30% and 14q32 IGH gene 86% Hypermutated IGVH. Age 62 years also Hypertension and Diabetes. Hb 5.9 TLC 368000 Platelets 68000. Please
drvksethi
in
CLL Support
5 years ago
FCR?
I'm concerned about whether my husband made the right decision when he was given the FCR arm of the Flair trial as over a number of weeks been mentioned that it is not the best frontline treatment to have. We were both CLL nieve even though he had it for 19yrs and had no problems. Did we make a hasty
I'm concerned about whether my husband made the right decision when he was given the FCR arm of the Flair trial as over a number of weeks been mentioned that it is not the best frontline treatment to have. We were both CLL nieve even though he had it for 19yrs and had no problems. Did we make a hasty
very
in
CLL Support
5 years ago
FCR versus Ibrutinib
Hi everyone. I am new here and have posted a couple of times but have not introduced myself. I am 62, male, diagnosed with CLL in 2011. No deletions and mutated IGVH, so it is a fairly benign form of CLL. My ALC was 8,000 at diagnosis and it has crept up slowly to 18,000 over 8 years. Recently I had
Hi everyone. I am new here and have posted a couple of times but have not introduced myself. I am 62, male, diagnosed with CLL in 2011. No deletions and mutated IGVH, so it is a fairly benign form of CLL. My ALC was 8,000 at diagnosis and it has crept up slowly to 18,000 over 8 years. Recently I had
GrumpyFrog
in
CLL Support
5 years ago
New to Site Imbruvica & Rituxan how are they tolerated together.
Had treatment with
fludarabine
.. Was in remission for 10 years. Then back to watch and wait. Started imbruvica Jan 2019..first two weeks WBC came down...last two weeks the number went higher than when I started the medication. Now am going to start rituxim in conjunction with imbruvia.
Had treatment with
fludarabine
.. Was in remission for 10 years. Then back to watch and wait. Started imbruvica Jan 2019..first two weeks WBC came down...last two weeks the number went higher than when I started the medication. Now am going to start rituxim in conjunction with imbruvia.
Bobbietf
in
CLL Support
5 years ago
CLL and related skin conditions
I am 73 and have had CLL for the last six years. I had FCR treatment some 5 years ago and more recently a milder form of FCR to keep the CLL at bay. One of the apparent side effects from the CLL has been an increase in Keratosis and Squamus Cell Carcinoma which have been treated with liquid nitrogen
I am 73 and have had CLL for the last six years. I had FCR treatment some 5 years ago and more recently a milder form of FCR to keep the CLL at bay. One of the apparent side effects from the CLL has been an increase in Keratosis and Squamus Cell Carcinoma which have been treated with liquid nitrogen
plett1234
in
CLL Support
5 years ago
Right decision? FCR vs. trial
Hi everyone I have been following and occasionally writing replies but have not introduced myself. This is a fantastic very supportive group and I am amazed but the helpful and very knowledgeable contributions my so many members. I was diagnosed in 2014 with a routine blood test at the age of 49
Hi everyone I have been following and occasionally writing replies but have not introduced myself. This is a fantastic very supportive group and I am amazed but the helpful and very knowledgeable contributions my so many members. I was diagnosed in 2014 with a routine blood test at the age of 49
schmitthj007
in
CLL Support
5 years ago
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