Search
Search
About
Log in
Join
Experiences with
Fludarabine
Posts
Communities
801 public posts
Filter results
What if venetoclax and/or ibritinib stops working?
Hi all, I am a 33 year old dutch male. I have had CLL since i am 24 and have been dealing with CLL for 9 years. I have mutated genes wich put me into a poor prognossis. I have had FCR when i was arround 26/27. I gave me 2 years of no threatment. Then it came back and i was place in a studie group
Hi all, I am a 33 year old dutch male. I have had CLL since i am 24 and have been dealing with CLL for 9 years. I have mutated genes wich put me into a poor prognossis. I have had FCR when i was arround 26/27. I gave me 2 years of no threatment. Then it came back and i was place in a studie group
JanAmsterdam
in
CLL Support
6 years ago
Manuka Honey
Hi has anyone taken anything particularly Manuka honey to help with low neutrophil ??? Or any ideas as how to get levels up as it’s delaying 2nd round FCR for my husband
Hi has anyone taken anything particularly Manuka honey to help with low neutrophil ??? Or any ideas as how to get levels up as it’s delaying 2nd round FCR for my husband
Sailormoon11
in
CLL Support
6 years ago
** NHSE and NICE Ibrutinib update **
Sean O'Neill, Chief Reporter from The Times who broke the story about the failure of NHSE to prescribe Ibrutinib as per the NICE Guidance will be on the
Jeremy Vine show today at 1pm.
He will be talking about his CLL and the fight to get the right treatment, Ibrutinib, following his relapse after
Sean O'Neill, Chief Reporter from The Times who broke the story about the failure of NHSE to prescribe Ibrutinib as per the NICE Guidance will be on the
Jeremy Vine show today at 1pm.
He will be talking about his CLL and the fight to get the right treatment, Ibrutinib, following his relapse after
Jm954
Administrator
in
CLL Support
6 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
International Prognostic Index Calculator
ALERT: avoid this post if you are the kind of person who does not want to know about statistics and odds of disease progression. This is deliberately an unlocked post so do not share your own results in the comments section unless you are happy for them to be shown in google search results. Feel free
ALERT: avoid this post if you are the kind of person who does not want to know about statistics and odds of disease progression. This is deliberately an unlocked post so do not share your own results in the comments section unless you are happy for them to be shown in google search results. Feel free
AdrianUK
in
CLL Support
6 years ago
what happens after treatment of CLL ?
After treatment of CLL through FCR and getting into remission hopefully, how will the life of the CLL patient be, I mean do I have to do regular tests yearly or every 3 months to check if CLL is gone or came back, can anyone shed the light on this issue please, thanks. Firas
After treatment of CLL through FCR and getting into remission hopefully, how will the life of the CLL patient be, I mean do I have to do regular tests yearly or every 3 months to check if CLL is gone or came back, can anyone shed the light on this issue please, thanks. Firas
Nour80Leen2011
in
CLL Support
6 years ago
CLL treatment and hair loss
Hi everyone I am about to start treatment for CLL soon and most probably the treatment will be FCR meaning a mix of chemotherapy, are am I going to lose my hair? Can anyone share his/her experience with me, thanks. Firas
Hi everyone I am about to start treatment for CLL soon and most probably the treatment will be FCR meaning a mix of chemotherapy, are am I going to lose my hair? Can anyone share his/her experience with me, thanks. Firas
Nour80Leen2011
in
CLL Support
6 years ago
Cold
Hi guys I think I’m taking a cold or something how can I help to try and save giving this to my husband who’s having FCR treatment ???
Hi guys I think I’m taking a cold or something how can I help to try and save giving this to my husband who’s having FCR treatment ???
Sailormoon11
in
CLL Support
6 years ago
Yet another side effect after FCR
After the acute anaemia, disappearing neutrophils and infection in both eyes, I now have a rash all over me, except my face. It’s 3 weeks since first FCR. The antibiotics i’m taking list a rash as a possible side effect. Has anyone else suffered this? No raised welts, just an annoying mildly itchy unattractive
After the acute anaemia, disappearing neutrophils and infection in both eyes, I now have a rash all over me, except my face. It’s 3 weeks since first FCR. The antibiotics i’m taking list a rash as a possible side effect. Has anyone else suffered this? No raised welts, just an annoying mildly itchy unattractive
Mandy56
in
CLL Support
6 years ago
Was anyone else frightened to start Ivig treatments ?
I like to consider myself a pretty tough chick but for some reason I’m scared to start then for fear of long term side effects like the FCR did to me by giving me autoimmune neutropenia. In order to supposedly fix that I need these Ivig drips two days in a row for 5 hours every 3 weeks..... I worry
I like to consider myself a pretty tough chick but for some reason I’m scared to start then for fear of long term side effects like the FCR did to me by giving me autoimmune neutropenia. In order to supposedly fix that I need these Ivig drips two days in a row for 5 hours every 3 weeks..... I worry
Luckyliss
in
CLL Support
6 years ago
Be positive
Evening everyone - as usual this place gives me a lift - so much help and support from everyone. I'm reminded that a year ago I was mid FCR (6 rounds) and feeling awful. This evening I ran 10kilometres in 52 minutes as I train for the Westminster 10K that I am running in support of CLLSA. My overriding
Evening everyone - as usual this place gives me a lift - so much help and support from everyone. I'm reminded that a year ago I was mid FCR (6 rounds) and feeling awful. This evening I ran 10kilometres in 52 minutes as I train for the Westminster 10K that I am running in support of CLLSA. My overriding
MattGGibson
in
CLL Support
6 years ago
Alcohol
Hi guys can anyone tell me if they had a few beers when on the FCR Treatment programme after their 5 day tablets were finished. Hubby wants a beer in this nice weather ??
Hi guys can anyone tell me if they had a few beers when on the FCR Treatment programme after their 5 day tablets were finished. Hubby wants a beer in this nice weather ??
Sailormoon11
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
Muscle Spasms - Not dehydrated
Post round five FCR with Neulasta (this week). I am experiencing moderate spasms / muscular seizures. Has anyone had similar experiences? Suggestions for overcoming these? At their worse, they actually pulse in intensity with the beating of my heart – yes, the intensity worsens with the beating of my
Post round five FCR with Neulasta (this week). I am experiencing moderate spasms / muscular seizures. Has anyone had similar experiences? Suggestions for overcoming these? At their worse, they actually pulse in intensity with the beating of my heart – yes, the intensity worsens with the beating of my
Paul_Mangold
in
CLL Support
6 years ago
Hospital response to lack of monitoring after first FCR
Just had a call back from a (lady) doctor after my call to the (male) consultant and (male) trial nurse to complain about lack of monitoring by the hospital. Take what inference you will from this! Unreserved apologies. A new team had taken over the discharge papers when I left hospital. I pointed out
Just had a call back from a (lady) doctor after my call to the (male) consultant and (male) trial nurse to complain about lack of monitoring by the hospital. Take what inference you will from this! Unreserved apologies. A new team had taken over the discharge papers when I left hospital. I pointed out
Mandy56
in
CLL Support
6 years ago
Thoughts on CLL treatment and watch and wait
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
AdrianUK
in
CLL Support
6 years ago
Blood transfusion after first round of FCR
Am I just unlucky? The start of the FCR went so well, though I was breathless from the first dose of Rituximab. That went worse as time went on and my heart felt like it was labouring. I constantly had palpitations for two weeks and even a blackout Went to my GP last Monday, who sent me to local hospital
Am I just unlucky? The start of the FCR went so well, though I was breathless from the first dose of Rituximab. That went worse as time went on and my heart felt like it was labouring. I constantly had palpitations for two weeks and even a blackout Went to my GP last Monday, who sent me to local hospital
Mandy56
in
CLL Support
6 years ago
CAR-T update and more
Writing this with
fludarabine
and cyclophosphamide running through my PICC line to make room for the CAR-T cells on March 22. I have tried to keep the CLL Society website up to date with weekly reports from ASH. Last week it was an interview with Dr.
Writing this with
fludarabine
and cyclophosphamide running through my PICC line to make room for the CAR-T cells on March 22. I have tried to keep the CLL Society website up to date with weekly reports from ASH. Last week it was an interview with Dr.
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Lessons from five years of ibrutinib experience
This is a link to a paper that was released online a couple of months ago. I thought I’d take the opportunity to highlight some things from it and point out what we should and shouldn’t conclude from it. I’d be interested also to know any of your thoughts on this. Note this is an unlocked post so do
This is a link to a paper that was released online a couple of months ago. I thought I’d take the opportunity to highlight some things from it and point out what we should and shouldn’t conclude from it. I’d be interested also to know any of your thoughts on this. Note this is an unlocked post so do
AdrianUK
in
CLL Support
6 years ago
Anyone had FCR as second line treatment?
Hi all has any one had FCR for second line treatment if so how were your results. I'm going back on treatment after 22nd May and discussing what's best.
Hi all has any one had FCR for second line treatment if so how were your results. I'm going back on treatment after 22nd May and discussing what's best.
Mick491
in
CLL Support
6 years ago
Questions for consultant?
49 Years old, in UK (Yorkshire) Diagnosed 2 years ago, blood counts steadily rising. I am no longer working (As a p/t Teacher) due to fatigue. Started FCR Chemo due to fatigue (On Cycle 1) . No swollen lymph nodes etc but CT scan showed Spleen enlarged and lesions on Liver. Biopsy revealed CLL progression
49 Years old, in UK (Yorkshire) Diagnosed 2 years ago, blood counts steadily rising. I am no longer working (As a p/t Teacher) due to fatigue. Started FCR Chemo due to fatigue (On Cycle 1) . No swollen lymph nodes etc but CT scan showed Spleen enlarged and lesions on Liver. Biopsy revealed CLL progression
AntonMB
in
CLL Support
6 years ago
1
...
17
18
19
...
41
Next page
10
20
30
40
Filter results
Clear filters
Posted in
All communities
CLL Support
777 results
CLL America Support
7 results
Leukaemia Support
6 results
View top 10 communities
Sort by
Most Relevant
Newest