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Farewell
My wife of nearly 50 years died in late April after a 11 year battle with CLL. Diagnosed in 2008 with NHL (SLL) her haematologist treated her with 6 cycles of CHOP +R (cyclophosphamide, doxorubicin, vincristine, prednisone + rituximab). This was followed by 9 quarterly treatments of rituximab. In 2013
My wife of nearly 50 years died in late April after a 11 year battle with CLL. Diagnosed in 2008 with NHL (SLL) her haematologist treated her with 6 cycles of CHOP +R (cyclophosphamide, doxorubicin, vincristine, prednisone + rituximab). This was followed by 9 quarterly treatments of rituximab. In 2013
HannahHugo
in
CLL Support
5 years ago
FLAIR TRIAL-FCR-HOLIDAYS
Hi members ..i complete my final FCR treatment in the UK on October 11th..we have a motorhome and have been travelling around the UK in it during treatment when I have been well..the question is we would like to travel to spain in it 5 weeks after treatment completes to our holiday home there for a
Hi members ..i complete my final FCR treatment in the UK on October 11th..we have a motorhome and have been travelling around the UK in it during treatment when I have been well..the question is we would like to travel to spain in it 5 weeks after treatment completes to our holiday home there for a
Fayeryan1
in
CLL Support
5 years ago
Progression Free Survival (PFS) post Discontinuation of Ibrutinib in E1912 Trial
An update re the E1912 trial reported at iwCLL this year -
"patients who stopped ibrutinib for toxicity had a median PFS from the time of stopping ibrutinib of about 2 years which is reassuring news. This phenomenon is in clinical practice, good to see similar data from a RCT. However, there is
An update re the E1912 trial reported at iwCLL this year -
"patients who stopped ibrutinib for toxicity had a median PFS from the time of stopping ibrutinib of about 2 years which is reassuring news. This phenomenon is in clinical practice, good to see similar data from a RCT. However, there is
Jm954
Administrator
in
CLL Support
5 years ago
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CLL FCR update - 3 years on.
Hello all CLL curios. I have just had my latest 6 monthly ‘Watch and Wait’ blood tests and Flair trial assessment 3 years on from commencement of FCR chemotherapy. As I was an avid reader and regular contributor of posts on the build up and during my Chemo - drawing great strength and support - I felt
Hello all CLL curios. I have just had my latest 6 monthly ‘Watch and Wait’ blood tests and Flair trial assessment 3 years on from commencement of FCR chemotherapy. As I was an avid reader and regular contributor of posts on the build up and during my Chemo - drawing great strength and support - I felt
Rich316
in
CLL Support
5 years ago
CLL-.hair dye with FCR
hi...when did any members dye their hair before/ during /after treatment for CLL..I havent and darent as everything more sensitive now for at least 6 months and going pretty grey 😒...how long did you wait ? I dont want a reaction doing it too early ..even makeup caused irritation shortly after FCR started
hi...when did any members dye their hair before/ during /after treatment for CLL..I havent and darent as everything more sensitive now for at least 6 months and going pretty grey 😒...how long did you wait ? I dont want a reaction doing it too early ..even makeup caused irritation shortly after FCR started
Fayeryan1
in
CLL Support
5 years ago
Venetoclax day 1 (UK)
My husband was due to start venetoclax last week but it was postponed due to a lack of beds in the haematology ward. He started this morning. Started with a blood test. When the results from that were received they gave him 20mg of venetoclax along with anti-virals, antibiotics, anti gout and anti
My husband was due to start venetoclax last week but it was postponed due to a lack of beds in the haematology ward. He started this morning. Started with a blood test. When the results from that were received they gave him 20mg of venetoclax along with anti-virals, antibiotics, anti gout and anti
Fowey2009
in
CLL Support
5 years ago
Severe reaction to FCR
I posted a while ago regarding treatment options. In the end I chose FCR rather than entering the Flair trial as my markers met with a good outcome from FCR. Well, after one round it has been stopped as I had such a severe reaction to the treatment. 3 hospital stays for neutropenia and 1 hospital stay
I posted a while ago regarding treatment options. In the end I chose FCR rather than entering the Flair trial as my markers met with a good outcome from FCR. Well, after one round it has been stopped as I had such a severe reaction to the treatment. 3 hospital stays for neutropenia and 1 hospital stay
Racing1961
in
CLL Support
5 years ago
Factors Identified for Risk of Second Cancer in CLL Following BTK Inhibition
There was hope that non-chemo CLL treatments would avoid the increased risk of subsequent secondary cancers, with concern about Myelodysplasia Syndromes and Acute Lymphocytic Leukaemia (MDS and ALL) of particular concern with FCR, due to possible DNA damage to bone marrow stem cells. It was thought
There was hope that non-chemo CLL treatments would avoid the increased risk of subsequent secondary cancers, with concern about Myelodysplasia Syndromes and Acute Lymphocytic Leukaemia (MDS and ALL) of particular concern with FCR, due to possible DNA damage to bone marrow stem cells. It was thought
AussieNeil
Partner
in
CLL Support
5 years ago
FCR and immunosuppression
For those of us who have had FCR chemotherapy would we expect to be immunocompromised in the long-term? I think here lymphocyte and neutrophil levels are relevant.
For those of us who have had FCR chemotherapy would we expect to be immunocompromised in the long-term? I think here lymphocyte and neutrophil levels are relevant.
Jotame
in
CLL Support
5 years ago
Treatment FCR with unmutated IGVH—clarify pls!
My husband is 13q del and unmutated IGVH. In Switzerland they propose FCR treatment and have said outcomes are generally the same. I have read differently. Any insights? Can you direct me to articles? Thank you, his wife
My husband is 13q del and unmutated IGVH. In Switzerland they propose FCR treatment and have said outcomes are generally the same. I have read differently. Any insights? Can you direct me to articles? Thank you, his wife
gingerlovesal
in
CLL Support
5 years ago
Don't give up just enjoy each day!
The_Eagle If you have CLL you need a CLL specialist. I have two and this month I am starting on Gayza only because I did FCR in 2009 and chemo pill in 2017 but could not tolerate it. My doctors told me to do the Gayza for 4- 6 months and hopefully my blood will be better but to continue living I will
The_Eagle If you have CLL you need a CLL specialist. I have two and this month I am starting on Gayza only because I did FCR in 2009 and chemo pill in 2017 but could not tolerate it. My doctors told me to do the Gayza for 4- 6 months and hopefully my blood will be better but to continue living I will
The_Eagle
in
CLL Support
5 years ago
CLL and Statins
Here is the question, has anyone experienced a quick or sudden change in their blood counts since taking Atorvastatin? Hi All, I am reasonably new to this forum but was diagnosed with CLL in 2009. On W&W until 2017 when I had one cycle of FCR, after a bad reaction in intensive care with neutropenic sepsis
Here is the question, has anyone experienced a quick or sudden change in their blood counts since taking Atorvastatin? Hi All, I am reasonably new to this forum but was diagnosed with CLL in 2009. On W&W until 2017 when I had one cycle of FCR, after a bad reaction in intensive care with neutropenic sepsis
Richardmint
in
CLL Support
5 years ago
First cycle of Fcr
After my daughter25 years sll patients had taken the first dose of FCR the glands in her neck responded and Her size reduces and then returned to inflation again before the time of the second dose Is this normal
After my daughter25 years sll patients had taken the first dose of FCR the glands in her neck responded and Her size reduces and then returned to inflation again before the time of the second dose Is this normal
Baki74
in
CLL Support
5 years ago
MRD
When I finished FCR in 4/2014 my blood showed MRD negative. Since than it showed starting 2/2015 CLL of 0,1 - 0,5% in 10/2017. next in 2018 UMRD as they told me, it was undetectable. In 10/2018 it was 0,01 % and in 5/2019 0,02%! Looks like 16 out of 10.000 lymphocytes. That means, it will increase by
When I finished FCR in 4/2014 my blood showed MRD negative. Since than it showed starting 2/2015 CLL of 0,1 - 0,5% in 10/2017. next in 2018 UMRD as they told me, it was undetectable. In 10/2018 it was 0,01 % and in 5/2019 0,02%! Looks like 16 out of 10.000 lymphocytes. That means, it will increase by
seoul
in
CLL Support
5 years ago
Thank you all!!!
Hello, a short summary.. After FCR in 2015 and BR in 2017, our doctor suggested my husband to start Ibrutinib since his lymph nodes in abdomen are almost 7-8cm, wbc above 25, platelets under 100 and he has lost 5-6kg in the last month. I want to thank you all because I've read so many posts about Ibrutinib
Hello, a short summary.. After FCR in 2015 and BR in 2017, our doctor suggested my husband to start Ibrutinib since his lymph nodes in abdomen are almost 7-8cm, wbc above 25, platelets under 100 and he has lost 5-6kg in the last month. I want to thank you all because I've read so many posts about Ibrutinib
aylinozel
in
CLL Support
5 years ago
TIL Treatment underway at last!
Infusion 20 hours, then another infusion for 2 hours -Thurs May 2:
Fludarabine
#1. -Fri May 3:
Fludarabine
#2. -Sat May 4:
Fludarabine
#3. -Sun May 5:
Fludarabine
#4. -Mon May 6:
Fludarabine
#5.
Infusion 20 hours, then another infusion for 2 hours -Thurs May 2:
Fludarabine
#1. -Fri May 3:
Fludarabine
#2. -Sat May 4:
Fludarabine
#3. -Sun May 5:
Fludarabine
#4. -Mon May 6:
Fludarabine
#5.
missyrand
Ambassador
in
Melanoma Caregivers
5 years ago
Acerta trial
I’m being assessed for this trial but if I get put on 3rd arm fcr can I decline and go on flair trial I don’t want chemo
I’m being assessed for this trial but if I get put on 3rd arm fcr can I decline and go on flair trial I don’t want chemo
Yidarmy69
in
CLL Support
5 years ago
fish testing or lack of
Hi, I'm new to this group. Was diagnosed in 2011 and had first treatment of six rounds of FCR in 2013. Remission was about two and a half years. Have been on Ibrutinib for about 16 months now with 2 dose reductions along the way. My concern is I was never tested for mutations or deletions and when I
Hi, I'm new to this group. Was diagnosed in 2011 and had first treatment of six rounds of FCR in 2013. Remission was about two and a half years. Have been on Ibrutinib for about 16 months now with 2 dose reductions along the way. My concern is I was never tested for mutations or deletions and when I
rubberlegs68
in
CLL Support
5 years ago
Mode of Progression After Frontline Treatment Predicts Clinical Outcomes in Patients With CLL
Not only is CLL heterogeneous in watch and wait, that's also the case after treatment. An analysis of over 2,000 patients from three German CLL Study Group clinical trials has identified that unfit patients developing lymphadenopathy (swelling nodes) have a significantly lower median overall survival
Not only is CLL heterogeneous in watch and wait, that's also the case after treatment. An analysis of over 2,000 patients from three German CLL Study Group clinical trials has identified that unfit patients developing lymphadenopathy (swelling nodes) have a significantly lower median overall survival
AussieNeil
Partner
in
CLL Support
5 years ago
Newly diagnosed with Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma - CLL/SLL or just found us? This post is for you!
Welcome to the CLL Support community on HealthUnlocked, a very active community with over 22,000 members. This pinned post is specifically for new members, in particular those that have been recently diagnosed with Chronic Lymphocytic Leukaemia/Small Lymphocytic Lymphoma CLL/SLL. (CLL and SLL are the
Welcome to the CLL Support community on HealthUnlocked, a very active community with over 22,000 members. This pinned post is specifically for new members, in particular those that have been recently diagnosed with Chronic Lymphocytic Leukaemia/Small Lymphocytic Lymphoma CLL/SLL. (CLL and SLL are the
AussieNeil
Partner
in
CLL Support
5 years ago
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