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Acute ankle pain
Hi, I wonder if anyone else has experienced sudden onset of acute joint pain. I am a year post FCR chemo for CLL. Suddenly started with acute ankle pain bilaterally in my ankles and feet. After 3 weeks of anti inflammatory medication and pain killers, the symptoms remain the same. Struggle to walk even
Hi, I wonder if anyone else has experienced sudden onset of acute joint pain. I am a year post FCR chemo for CLL. Suddenly started with acute ankle pain bilaterally in my ankles and feet. After 3 weeks of anti inflammatory medication and pain killers, the symptoms remain the same. Struggle to walk even
Kingfisher20
in
CLL Support
4 years ago
CLL remission
My spouse is in remission after doing 6 rounds of FCR for his CLL. His last round was in August. Since late September he has been getting small lumps under his skin . They seem to only affect his face neck and chest. They are somewhat red and inflamed. They go away within a couple days on their own
My spouse is in remission after doing 6 rounds of FCR for his CLL. His last round was in August. Since late September he has been getting small lumps under his skin . They seem to only affect his face neck and chest. They are somewhat red and inflamed. They go away within a couple days on their own
DDInc65
in
CLL Support
4 years ago
Ibrutinib and pneumonia
On ibrutinib for 2-1/2 yrs with good response managing CLL. Depleted immune status continues after FCR 6 yrs ago. Had pneumonia for 10 mos and continue to have debilitating episodes of extreme fatigue, chills and sweats that are only addressed with heavy duty moxyfloxacin. Welcome any thoughts
On ibrutinib for 2-1/2 yrs with good response managing CLL. Depleted immune status continues after FCR 6 yrs ago. Had pneumonia for 10 mos and continue to have debilitating episodes of extreme fatigue, chills and sweats that are only addressed with heavy duty moxyfloxacin. Welcome any thoughts
irish828
in
CLL Support
5 years ago
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New Review Article about Venetoclax
There is no doubt to me that Venetoclax is a very exciting development for us in CLL. And yet we don't seem to talk about it quite as much on here as Ibrutinib and FCR. Just this month a very helpful and quite detailed review article has been released. It is well worth a look whether you are in watch
There is no doubt to me that Venetoclax is a very exciting development for us in CLL. And yet we don't seem to talk about it quite as much on here as Ibrutinib and FCR. Just this month a very helpful and quite detailed review article has been released. It is well worth a look whether you are in watch
AdrianUK
in
CLL Support
5 years ago
Experience with Fludarabine & Rituximab?
He recommended her to begin with combination of Rituximab +
Fludarabine
(in-patient treatment, via injections). I just wanted to know if anyone else has received this treatment before and how was your experience with it? Did you experience any side effects and did the treatment work well for you?
He recommended her to begin with combination of Rituximab +
Fludarabine
(in-patient treatment, via injections). I just wanted to know if anyone else has received this treatment before and how was your experience with it? Did you experience any side effects and did the treatment work well for you?
Dolce1
in
CLL Support
5 years ago
Looking for advice on travel insurance
Anyone have advice on travel insurance. I’m looking to visit my Daughter in South Africa. I’m 6 years post FCR
Anyone have advice on travel insurance. I’m looking to visit my Daughter in South Africa. I’m 6 years post FCR
Billys60
in
CLL Support
5 years ago
Greetings from Chaya Venkat <chaya@clltopics.net>
Remember back when single agent
fludarabine
was the slam dunk therapy option for new CLL patients? With any luck, you guys will benefit from all the new therapy options and the next generations of CLL patients (your kids and grand-kids) can look forward to even better choices.
Remember back when single agent
fludarabine
was the slam dunk therapy option for new CLL patients? With any luck, you guys will benefit from all the new therapy options and the next generations of CLL patients (your kids and grand-kids) can look forward to even better choices.
lankisterguy
Volunteer
in
CLL Support
5 years ago
Travel insurance
Hi folks. I know this will have been asked a thousand times however. I am 6 years since FCR treatment and to date still doing well not near further treatment ( fingers crossed) my daughter lives in South Africa I’m in Scotland and looking to visit her next year. Does anyone have advice on travel insurance
Hi folks. I know this will have been asked a thousand times however. I am 6 years since FCR treatment and to date still doing well not near further treatment ( fingers crossed) my daughter lives in South Africa I’m in Scotland and looking to visit her next year. Does anyone have advice on travel insurance
Billys60
in
CLL Support
5 years ago
Started imbruvica
I was diagnosed with CLL in 2000... Did the usual watchful waiting till 2009, then had FCR for 6 months. Went into total remission till 2016... Had AIHA in September of 2018, treated in hospital with 4 transfusions ,and prednisone. My cll is back & I started imbruvica 3 days ago. I'm feeling much stronger
I was diagnosed with CLL in 2000... Did the usual watchful waiting till 2009, then had FCR for 6 months. Went into total remission till 2016... Had AIHA in September of 2018, treated in hospital with 4 transfusions ,and prednisone. My cll is back & I started imbruvica 3 days ago. I'm feeling much stronger
habsrule
in
CLL Support
5 years ago
Flowers and FCR
Well, it's the evening before I start FCR and a friend has sent me cut flowers. There is conflicting info on line, some sights say no flowers or plants in the house at all and others say just not in the bedroom. Any thoughts?
Well, it's the evening before I start FCR and a friend has sent me cut flowers. There is conflicting info on line, some sights say no flowers or plants in the house at all and others say just not in the bedroom. Any thoughts?
Root65
in
CLL Support
5 years ago
Advice about flu vaccination please.
Hello everyone. I just need to ask if Paul ( my lovely husband who has the CLL) should have any particular flu vaccine. Our GP ( we are in the U.K.) says we should contact them about mid October, but some of the local pharmacies are advertising flu jabs now.... I have heard there are different types
Hello everyone. I just need to ask if Paul ( my lovely husband who has the CLL) should have any particular flu vaccine. Our GP ( we are in the U.K.) says we should contact them about mid October, but some of the local pharmacies are advertising flu jabs now.... I have heard there are different types
Fran57
in
CLL Support
5 years ago
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
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
Administrator
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
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