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CLL survival times ARE improving, thanks to BTK and BCL-2 inhibitors
Those older chemoimmunotherapy treatments, typically Bendamustine + Rituximab (BR) or
Fludarabine
+ Cyclophosphamide + Rituximab (FCR), selected for tougher to treat sub-clones, which they cause through inducing DNA damage that will hopefully trigger apoptosis [u]if[/u] the TP53 gene isn't mutated or
Those older chemoimmunotherapy treatments, typically Bendamustine + Rituximab (BR) or
Fludarabine
+ Cyclophosphamide + Rituximab (FCR), selected for tougher to treat sub-clones, which they cause through inducing DNA damage that will hopefully trigger apoptosis [u]if[/u] the TP53 gene isn't mutated or
AussieNeil
Partner
in
CLL Support
5 months ago
Median PFS for FCR treated CLL patients with IGHV-M was 14.6 years vs 4.2 years for patients with IGHV-UM. V+O and I+R look to be superior
An update of the long-term follow-up results from the original 300-patient FCR (
fludarabine
, cyclophosphamide, and rituximab) study initiated at MD Anderson in 1999,
Sustained remissions in CLL after frontline FCR treatment with very-long-term follow-up,
reports ~47% of patients with mutated IGHV
An update of the long-term follow-up results from the original 300-patient FCR (
fludarabine
, cyclophosphamide, and rituximab) study initiated at MD Anderson in 1999,
Sustained remissions in CLL after frontline FCR treatment with very-long-term follow-up,
reports ~47% of patients with mutated IGHV
AussieNeil
Partner
in
CLL Support
1 month ago
lymphocytes/neutrophils
After 5 of 6 of
fludarabine
cyclophosphamide rituximab I went into semi remission and now after many hospitalizations with infection have IVIG once a month that works quite well at keeping me out of the hospital.
After 5 of 6 of
fludarabine
cyclophosphamide rituximab I went into semi remission and now after many hospitalizations with infection have IVIG once a month that works quite well at keeping me out of the hospital.
Kimsome
in
CLL Support
1 year ago
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My chemo experience
The prognosis for bendamustine isn't as good as
fludarabine
- the likely effective period being 4 or 5 years as opposed to 15 years for
fludarabine
, but thats life. Overall, the post treatment fatigue and brain fog was a surprise and not a good one. But I wasn't in pain.
The prognosis for bendamustine isn't as good as
fludarabine
- the likely effective period being 4 or 5 years as opposed to 15 years for
fludarabine
, but thats life. Overall, the post treatment fatigue and brain fog was a surprise and not a good one. But I wasn't in pain.
kiwiCanuck
in
CLL Support
1 year ago
POST 3 - CAR-T cell therapy
Lymphodepletion {chemotherapy} will also commence: Cyclophosphamide {D-6} also
Fludarabine
for four days {D-6 to D-3} followed by two days rest and then Day 0 {14th June} will be the exciting day that I receive the first small dose of the modified T-cells.
Lymphodepletion {chemotherapy} will also commence: Cyclophosphamide {D-6} also
Fludarabine
for four days {D-6 to D-3} followed by two days rest and then Day 0 {14th June} will be the exciting day that I receive the first small dose of the modified T-cells.
casanova
in
CLL Support
1 year ago
Apparent PD on Ven
Hi I had 3 rounds FCR in Winter 2018 stopped for Neutropenia. My doc did NO testing for mrd or even flow. Ignorance was bliss til release 2 years later. Started V + O March 2023 for R/R. At one year, 3/24 was umrd 4 on PB and 4/10,000 on BM. 5 months later or month 18 of Ven mrd increased
Hi I had 3 rounds FCR in Winter 2018 stopped for Neutropenia. My doc did NO testing for mrd or even flow. Ignorance was bliss til release 2 years later. Started V + O March 2023 for R/R. At one year, 3/24 was umrd 4 on PB and 4/10,000 on BM. 5 months later or month 18 of Ven mrd increased
skipro
in
CLL Support
6 days ago
End of the road for PBS-available treaments for me.
Hi. I live in Adelaide, Australia and I'm anxious about possible treatments now. I was diagnosed at the end of 2016. Starting in 2019 I've had FCR, Nov 2022 splenomegaly and other leukemia symptoms so January 2023 I started on Ibrutinib, giving partial remission but with colitis side effects. Sept
Hi. I live in Adelaide, Australia and I'm anxious about possible treatments now. I was diagnosed at the end of 2016. Starting in 2019 I've had FCR, Nov 2022 splenomegaly and other leukemia symptoms so January 2023 I started on Ibrutinib, giving partial remission but with colitis side effects. Sept
Jotame
in
CLL Support
27 days ago
Swollen lymph node in my neck & armpit
I now have a swollen lymph node near my collarbone on my neck which is the size of a hard boiled egg and one under my armpit on the same side which is duck egg size. I’ve had three courses of chemo over the years: FCR, twice and not sure what the third dose was (CVR?) though it didn’t work anyway. 4
I now have a swollen lymph node near my collarbone on my neck which is the size of a hard boiled egg and one under my armpit on the same side which is duck egg size. I’ve had three courses of chemo over the years: FCR, twice and not sure what the third dose was (CVR?) though it didn’t work anyway. 4
Veebeegeebee
in
CLL Support
29 days ago
Finding joy and peace in God and His beautiful creations
I know I'm preaching to the choir yet it's nice to have a listening understanding ear. Just had my 16th and 17th malignant skin cancer removed since receiving FCR in 2018 despite following all the recommendations My back pain that became radicular pain is due to some severe spinal stenosis and a large
I know I'm preaching to the choir yet it's nice to have a listening understanding ear. Just had my 16th and 17th malignant skin cancer removed since receiving FCR in 2018 despite following all the recommendations My back pain that became radicular pain is due to some severe spinal stenosis and a large
skipro
in
CLL Support
1 month ago
Allograft
Just wanted to know if anyone knew anything about Allograft. My husband has just finished 2 yrs on ventaclax, all blood's good, and we expected to just go away and go back for blood's until maybe time for a different treatment, but was told they would like us to have a chat to a specialist about allograft
Just wanted to know if anyone knew anything about Allograft. My husband has just finished 2 yrs on ventaclax, all blood's good, and we expected to just go away and go back for blood's until maybe time for a different treatment, but was told they would like us to have a chat to a specialist about allograft
sue6741
in
CLL Support
1 month ago
STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
dwolden
in
CLL Support
2 months ago
Asymptomatic Trandmission
Does anyone have any data or medical journal articles, addressing the contagious for either Pre symptomatic infections or individuals that have asymptomatic viral infections.. Also, in my home state of Utah in the USA, I have not been able to find any published data on the current incident or presence
Does anyone have any data or medical journal articles, addressing the contagious for either Pre symptomatic infections or individuals that have asymptomatic viral infections.. Also, in my home state of Utah in the USA, I have not been able to find any published data on the current incident or presence
skipro
in
CLL Support
3 months ago
V + O for R/R CLL post FCR
I sent this to skyshark based on some info he posted but I was[u] hoping for the whole group to chime in.[/u] I had 3 rounds of FCR in 2018 stopped because of profound neutropenia. I relapsed exactly 2 years later and though I did not start Tx until the 5 year point in 2023, would have gladly started
I sent this to skyshark based on some info he posted but I was[u] hoping for the whole group to chime in.[/u] I had 3 rounds of FCR in 2018 stopped because of profound neutropenia. I relapsed exactly 2 years later and though I did not start Tx until the 5 year point in 2023, would have gladly started
skipro
in
CLL Support
3 months ago
Burning tongue and metallic taste .
I was dx 10 years ago. Had FCR, Ibrutinib, and Venetoclax. I am on Venetoclax now for 18 months after 6 times of V+O. A year ago I lost my taste sense and everything tastes metallic,but the worse is a burning tongue sensation. Does it have any connetion to CLL or Venetoclax ?Gidi
I was dx 10 years ago. Had FCR, Ibrutinib, and Venetoclax. I am on Venetoclax now for 18 months after 6 times of V+O. A year ago I lost my taste sense and everything tastes metallic,but the worse is a burning tongue sensation. Does it have any connetion to CLL or Venetoclax ?Gidi
GIDI
in
CLL Support
3 months ago
Is it the time for initial treatment?
As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form. So far, I've learned via reading literature and numerous posts about lymphocyte doubling time, lactate dehydrogenase, and lymph nodes. Her lymphocyte
As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form. So far, I've learned via reading literature and numerous posts about lymphocyte doubling time, lactate dehydrogenase, and lymph nodes. Her lymphocyte
Sagarcanada
in
CLL Support
4 months ago
Second Treatment -Feeling scared
My husband has CLL and finished FCR in April 2019. Due to low platelets, enlarged spleen and ALC doubling he needs to start his next treatment even though he feels wellV&R is the treatment starting on 15th May. I have researched extensively including within this group, and am aware of the treatment
My husband has CLL and finished FCR in April 2019. Due to low platelets, enlarged spleen and ALC doubling he needs to start his next treatment even though he feels wellV&R is the treatment starting on 15th May. I have researched extensively including within this group, and am aware of the treatment
Sanders9
in
CLL Support
4 months ago
Wendy
My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years later, he is in week 5 of venteclax, Rituximab to follow next month. Swollen lymph nodes have disappeared.
My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years later, he is in week 5 of venteclax, Rituximab to follow next month. Swollen lymph nodes have disappeared.
Fluxthecat10
in
CLL Support
4 months ago
Reply to issues with Spleen
Hi, I agree with most of these comments on here that the enlargement of your spleen is an indication perhaps that you are ready for some form of treatment, not removal. I had chemotherapy in 2020 and my spleen was massive. After a treatment cycle of FCR for 6 months and neutropenia sepsis for 10
Hi, I agree with most of these comments on here that the enlargement of your spleen is an indication perhaps that you are ready for some form of treatment, not removal. I had chemotherapy in 2020 and my spleen was massive. After a treatment cycle of FCR for 6 months and neutropenia sepsis for 10
Roseneath69
in
CLL Support
4 months ago
Recently started Acalabrutinib
Hi everyone, My father has recently started Acalabrutinib 5 days ago. He was diagnosed with CLL in 2007 and has received FCR (twice) and Benda-Ritux once. His CLL only went into partial remission on benda-ritux and has come back after one year since his last cycle of BR. I am worried regarding the
Hi everyone, My father has recently started Acalabrutinib 5 days ago. He was diagnosed with CLL in 2007 and has received FCR (twice) and Benda-Ritux once. His CLL only went into partial remission on benda-ritux and has come back after one year since his last cycle of BR. I am worried regarding the
Healthgiddy
in
CLL Support
5 months ago
uMRD 6
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
skipro
in
CLL Support
5 months ago
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