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Cheap Ibrutinib?
Hi Everyone, I started doing research on treatments and how I can handle the cost, since our insurance does not cover anything. We are doing the bone marrow this week and we will know for sure, but our doctor assumes Ibrutinib, combination or FCR, I prefer the first. However the cost is insane, I found
Hi Everyone, I started doing research on treatments and how I can handle the cost, since our insurance does not cover anything. We are doing the bone marrow this week and we will know for sure, but our doctor assumes Ibrutinib, combination or FCR, I prefer the first. However the cost is insane, I found
paula_dae
in
CLL Support
6 years ago
adverse reaction to aromatherapy?
The cancer nurse at my GP practise suggested I might like to take advantage of various treatments our local hospice provides for cancer sufferers. I went today for a chat with the therapist to discuss the options. She had a diffuser, puffing out essential oils, mixed with water. My lungs started to
The cancer nurse at my GP practise suggested I might like to take advantage of various treatments our local hospice provides for cancer sufferers. I went today for a chat with the therapist to discuss the options. She had a diffuser, puffing out essential oils, mixed with water. My lungs started to
Mandy56
in
CLL Support
6 years ago
Just got my FISH results
Hi everyone, I've just been to see my haematologist for my FISH results, the first since diagnosed 3 weeks ago. He says I have both the 11q and 13 deletions. I know the 11q isnt very good so we were pretty disappointed. I am starting FCR treatment next week. Could someone let me know what to expect?
Hi everyone, I've just been to see my haematologist for my FISH results, the first since diagnosed 3 weeks ago. He says I have both the 11q and 13 deletions. I know the 11q isnt very good so we were pretty disappointed. I am starting FCR treatment next week. Could someone let me know what to expect?
fugazi
in
CLL Support
6 years ago
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2 nd fcr day over
A big thank you for all your good wishes and advice, I sailed through second day no reactions at all, now a break till October once again thank you for all your kind words of support.
A big thank you for all your good wishes and advice, I sailed through second day no reactions at all, now a break till October once again thank you for all your kind words of support.
dandelup
in
CLL Support
6 years ago
Completely lost appetite
Hi there I hope everybody is doing well here. Very soon I am going to start my first cycle of FCR. The problem is that there is loss of appetite not due to fear of therapy but due to my progressive CLL.I want to know ,if any had such an experience ,when my symptoms will resolve? Will that happen after
Hi there I hope everybody is doing well here. Very soon I am going to start my first cycle of FCR. The problem is that there is loss of appetite not due to fear of therapy but due to my progressive CLL.I want to know ,if any had such an experience ,when my symptoms will resolve? Will that happen after
MoSamir
in
CLL Support
6 years ago
First dose over
Just had my first day of fcr, had slight blip halfway through got the shivers and for some reason got very emotional don’t ask me why, the nurses reckon it’s the enormity of what your having done to you suddenly hitting me anyway they sorted me out and finished the treatment felt a idiot , apparently
Just had my first day of fcr, had slight blip halfway through got the shivers and for some reason got very emotional don’t ask me why, the nurses reckon it’s the enormity of what your having done to you suddenly hitting me anyway they sorted me out and finished the treatment felt a idiot , apparently
dandelup
in
CLL Support
6 years ago
One year on from FCR - and I feel great
Teachers in the UK return to work this week after our summer holiday. For me, a teacher returning to his 23rd 'Start of the year' this year I am reminded that this time a year ago I was having the last of my 6 cycles of FCR. Since then, I've led my school through an OFSTED inspection, travelled to Italy
Teachers in the UK return to work this week after our summer holiday. For me, a teacher returning to his 23rd 'Start of the year' this year I am reminded that this time a year ago I was having the last of my 6 cycles of FCR. Since then, I've led my school through an OFSTED inspection, travelled to Italy
MattGGibson
in
CLL Support
6 years ago
Just a quick question re fcr
Starting FCR next week I presume I will have a picc line fitted? Just one of the many questions I forgot to ask yesterday at my appointment
Starting FCR next week I presume I will have a picc line fitted? Just one of the many questions I forgot to ask yesterday at my appointment
dandelup
in
CLL Support
6 years ago
Big day update
Now back from hospital I got selected for fcr which I was hoping to avoid, but going to approach it in a positive manor try and keep infection free and look forward to March when it will be finished.
Now back from hospital I got selected for fcr which I was hoping to avoid, but going to approach it in a positive manor try and keep infection free and look forward to March when it will be finished.
dandelup
in
CLL Support
6 years ago
Venetoclax and mouth sores
I have great news. Beginning of July I had a Bone Marrow Biopsy and it came back with NO CLL/SLL I had failed FCR and went on to Venetoclax & Obinutuzumab. Obinutuzumab finished in Feb 2018. I got Dermatomyositis (skin & Muscle) autoimmune disorder shortly after I started Ibrutinib and when it showed
I have great news. Beginning of July I had a Bone Marrow Biopsy and it came back with NO CLL/SLL I had failed FCR and went on to Venetoclax & Obinutuzumab. Obinutuzumab finished in Feb 2018. I got Dermatomyositis (skin & Muscle) autoimmune disorder shortly after I started Ibrutinib and when it showed
Eliotf
in
CLL Support
6 years ago
Update after 3rd FCR!
After 3 rounds of FCR, my doctor said we can go ahead with plan to get BMB in September and hopefully stop treatment! Had no problems during chemo. Port was great to have. Nodes gone, blood work continues to go in right direction. Slightly tired few days after treatments, few days of loss of appetite
After 3 rounds of FCR, my doctor said we can go ahead with plan to get BMB in September and hopefully stop treatment! Had no problems during chemo. Port was great to have. Nodes gone, blood work continues to go in right direction. Slightly tired few days after treatments, few days of loss of appetite
GMa27
in
CLL Support
6 years ago
Ibrutinib in September
Hi ,after just under 2 years remission after FCR , I am now starting ibrutinib in September.Just wondered how long people on here have been taking this?Thanks Martin
Hi ,after just under 2 years remission after FCR , I am now starting ibrutinib in September.Just wondered how long people on here have been taking this?Thanks Martin
Stacky66
in
CLL Support
6 years ago
Ibrutinib vs FCR: does order of therapy matter?
Time for a really specific question that is at the nub of the decision faced by doctors and patients when it is time to initiate first treatment. Does it matter which treatment we choose first? If you are a younger patient then clearly one of the critical issues is that sadly our disease is rarely cured
Time for a really specific question that is at the nub of the decision faced by doctors and patients when it is time to initiate first treatment. Does it matter which treatment we choose first? If you are a younger patient then clearly one of the critical issues is that sadly our disease is rarely cured
AdrianUK
in
CLL Support
6 years ago
Response and Survival Rates for FCR and Ibrutinib
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
AdrianUK
in
CLL Support
6 years ago
Clonal Evolution, mutations and resistance to CLL treatment
When someone is diagnosed with CLL they have at least one clone of B lymphocytes that are growing faster than they should and/or dying less than they should. As a result we are diagnosed with cancer. But the illness may be slow growing, not even needing treatment initially, but may develop to a point
When someone is diagnosed with CLL they have at least one clone of B lymphocytes that are growing faster than they should and/or dying less than they should. As a result we are diagnosed with cancer. But the illness may be slow growing, not even needing treatment initially, but may develop to a point
AdrianUK
in
CLL Support
6 years ago
FLAIR Study Site List Map / UK CLL Expert Centres
I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by viewing the following google map where you can easily find your closest site: https://www.google.com/maps/d/viewer?mid=16Jbl8Gd7yUX0mh3JdofRQptO6dY4YwSy
I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by viewing the following google map where you can easily find your closest site: https://www.google.com/maps/d/viewer?mid=16Jbl8Gd7yUX0mh3JdofRQptO6dY4YwSy
AdrianUK
in
CLL Support
6 years ago
Immune system during fcr
Hi all I am new to this site. My partner was diagnosed 5 years ago and just begun first round of fcr. He has no real side effects up to now but I wonder are there certain times during trwatment when the immune system is most compromised. We are avoiding busy places but dont want to live in a 'bubble'
Hi all I am new to this site. My partner was diagnosed 5 years ago and just begun first round of fcr. He has no real side effects up to now but I wonder are there certain times during trwatment when the immune system is most compromised. We are avoiding busy places but dont want to live in a 'bubble'
nugg9
in
CLL Support
6 years ago
I needed my pain meds
Hello my Health Unlocked family!! I've been a part of this community for years. I read a lot and I post because I know you will offer me knowledge and support. I realize in the USA we are having an opioid epidemic. Terrible. I was diagnosed with CLL and stage 4 lymphoma in February 2010. My lymph nodes
Hello my Health Unlocked family!! I've been a part of this community for years. I read a lot and I post because I know you will offer me knowledge and support. I realize in the USA we are having an opioid epidemic. Terrible. I was diagnosed with CLL and stage 4 lymphoma in February 2010. My lymph nodes
Kimsome
in
Pain Concern
6 years ago
Imbrevica rash
Hello everyone! Up was taking Imbrevica for 4 months and then a rash appeared. No prednisone or topical prednisone has helped. It's almost 70 days now. My doctor discontinued it on the 15th day but it just fades and returns. My dermatologist has suggested light therapy and topical prednisone. I've
Hello everyone! Up was taking Imbrevica for 4 months and then a rash appeared. No prednisone or topical prednisone has helped. It's almost 70 days now. My doctor discontinued it on the 15th day but it just fades and returns. My dermatologist has suggested light therapy and topical prednisone. I've
Art2018
in
CLL Support
6 years ago
Info needed
I know when you have fcr your immune system is destroyed and infections are a great concern, but if you don’t have fcr and go onto the ibrutinib trials is your immune system affected in same way and if so is it affected for all the time your taking the tablets?
I know when you have fcr your immune system is destroyed and infections are a great concern, but if you don’t have fcr and go onto the ibrutinib trials is your immune system affected in same way and if so is it affected for all the time your taking the tablets?
dandelup
in
CLL Support
6 years ago
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