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Sleepless night
I didn't sleep very well last night, silly thoughts kept going around in my head and I can't get this question out of my head which I think is probably just ignorance on my part, but I'm going to ask anyway because someone on here will be able to help me! I understand with FCR that rituximab is the
I didn't sleep very well last night, silly thoughts kept going around in my head and I can't get this question out of my head which I think is probably just ignorance on my part, but I'm going to ask anyway because someone on here will be able to help me! I understand with FCR that rituximab is the
sallyplest
in
CLL Support
7 years ago
Delayed 2nd FCR 🙄
Well I was mentally prepared for my 2nd FCR on May 8th but not physically it seems. I had my blood tests today and my WBC was down from 149 to 1.9, fantastic! But my neutrophils are also 1 so I can't have it. I'd be really grateful for some neutrophils info as I'm fairly ignorant in this area. Should
Well I was mentally prepared for my 2nd FCR on May 8th but not physically it seems. I had my blood tests today and my WBC was down from 149 to 1.9, fantastic! But my neutrophils are also 1 so I can't have it. I'd be really grateful for some neutrophils info as I'm fairly ignorant in this area. Should
sallyplest
in
CLL Support
7 years ago
Treatment starts tomorrow.
Well, here we are - OH was diagnosed in August 2014, so W&W didn't last as long as we had hoped it would. Most figures have remained fairly stable, but platelet levels consistently around 80 for last 9 months, so FCR starting tomorrow. As he is pretty fit, we are hoping that 4 lots of treatment will
Well, here we are - OH was diagnosed in August 2014, so W&W didn't last as long as we had hoped it would. Most figures have remained fairly stable, but platelet levels consistently around 80 for last 9 months, so FCR starting tomorrow. As he is pretty fit, we are hoping that 4 lots of treatment will
shoppingtrolley
in
CLL Support
7 years ago
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FCR...the "gold standard" for CLL
Well, after all kinds of advice and doing some serious research, I decided to go to OSU James Cancer Center for treatment. Dr. Byrd will give me FCR outpatient. I start Wed. May 3. I cant sleep or do much of anything. I am anxious but relieved to finally start treatment. I am trisomy 12 simple karotype
Well, after all kinds of advice and doing some serious research, I decided to go to OSU James Cancer Center for treatment. Dr. Byrd will give me FCR outpatient. I start Wed. May 3. I cant sleep or do much of anything. I am anxious but relieved to finally start treatment. I am trisomy 12 simple karotype
queencalabrese
in
CLL Support
7 years ago
Great interview with Dr. Furman of Cornell. Important discussion of new treatments verse FCR. Very positive for all of us.
Watch at: https://youtu.be/-eJhDFbEIYY Sorry if this was shown before.
Watch at: https://youtu.be/-eJhDFbEIYY Sorry if this was shown before.
Hoffy
in
CLL Support
7 years ago
High WBC and it does matter to my doctor
I think perhaps I should print out Maggie_b's post from yesterday, "High WBC but it doesn't matter" to give to my hemo/oncologist (along with other similar posts, articles, & webinar material about high WBC). Then again given my experience for the past 5+ years with him when it comes to other's opinions
I think perhaps I should print out Maggie_b's post from yesterday, "High WBC but it doesn't matter" to give to my hemo/oncologist (along with other similar posts, articles, & webinar material about high WBC). Then again given my experience for the past 5+ years with him when it comes to other's opinions
gemit2000
in
CLL Support
7 years ago
Digestion
Hi, as I have recently posted I have just finished first session/week of FCR. I find this site extremely helpful and like having a friend who you can turn to for advice. I'm abit of an ignoramus as regards medication, I take what I'm told when I'm told. I have been having lots of nausea and awful
Hi, as I have recently posted I have just finished first session/week of FCR. I find this site extremely helpful and like having a friend who you can turn to for advice. I'm abit of an ignoramus as regards medication, I take what I'm told when I'm told. I have been having lots of nausea and awful
sallyplest
in
CLL Support
7 years ago
Ibrutinib stopped - What treatment next ?
I am a 78 year old male living in the UK. Started treatment 3 years ago. Had two rounds of FCR which was stopped due to my bone marrow being wrecked. Managed to get on to Ibrutinib as a named patient via Dr Anna Schuh in Oxford. Now under the care of my local haematology consultant in Hereford. After
I am a 78 year old male living in the UK. Started treatment 3 years ago. Had two rounds of FCR which was stopped due to my bone marrow being wrecked. Managed to get on to Ibrutinib as a named patient via Dr Anna Schuh in Oxford. Now under the care of my local haematology consultant in Hereford. After
Haileybury
in
CLL Support
7 years ago
FCR, IBRUTINIB, VENETOCLAX what next...Stem Cell or CAR-T
Happy Easter everyone! So on this journey since Dec. 2010 and we can't seem to hit that remission "sweet spot" that we read about in the stats or trials - is it us or just the reality of how everyone's battle is unique in the world of CLL? We started V at the end of Feb. 2017 (as I posted our experience
Happy Easter everyone! So on this journey since Dec. 2010 and we can't seem to hit that remission "sweet spot" that we read about in the stats or trials - is it us or just the reality of how everyone's battle is unique in the world of CLL? We started V at the end of Feb. 2017 (as I posted our experience
NMMP
in
CLL Support
7 years ago
Flair Trial - FCR first dose
Hi all Arrived hospital Monday morning 8.45am for first infusion of rituximab but pharmacy had lost my prescription, so after waiting 3hrs sent home to return Tuesday. Yesterday started first infusion 17ml for first half hr then increased to 35ml coped fine until increased to 48ml and had reaction.
Hi all Arrived hospital Monday morning 8.45am for first infusion of rituximab but pharmacy had lost my prescription, so after waiting 3hrs sent home to return Tuesday. Yesterday started first infusion 17ml for first half hr then increased to 35ml coped fine until increased to 48ml and had reaction.
sallyplest
in
CLL Support
7 years ago
Chronic sinusitis following FCR?
My husband was diagnosed with CLL 6 years ago, Trisomy 12, a middle of the road but not common form. A year later he had FCR with great results but the remission lasted only 3 1/2 years. For the last year and a half he has had chronic sinusitis and for the last several months it has been serious. He
My husband was diagnosed with CLL 6 years ago, Trisomy 12, a middle of the road but not common form. A year later he had FCR with great results but the remission lasted only 3 1/2 years. For the last year and a half he has had chronic sinusitis and for the last several months it has been serious. He
Jls123
in
CLL Support
7 years ago
FCR and Bladder irritation
Hello All, I just thought I would pose a quick question to ask if these symptoms I have are common place or unrelated to FCR. I have just finished my 6th (and last) cycle of FCR just over a week ago. This last weekend I have started to need to go to toilet (pee) more often. I feel as
Hello All, I just thought I would pose a quick question to ask if these symptoms I have are common place or unrelated to FCR. I have just finished my 6th (and last) cycle of FCR just over a week ago. This last weekend I have started to need to go to toilet (pee) more often. I feel as
Rich316
in
CLL Support
7 years ago
Rituximab concerns
Early hours of the morning and I can't sleep. I start FLair trial Monday morning with FCR arm. Have a chest infection but taking antibiotics so will hopefully go ahead, I can't do another week of waiting!! At my recent appt. with oncologist she told me that I would start with just the chemo tablets
Early hours of the morning and I can't sleep. I start FLair trial Monday morning with FCR arm. Have a chest infection but taking antibiotics so will hopefully go ahead, I can't do another week of waiting!! At my recent appt. with oncologist she told me that I would start with just the chemo tablets
sallyplest
in
CLL Support
7 years ago
FCR lite for relapsed SLL
After having CR for 5 years, oncologist decided to start treatment in next few days. Primary driver is node size and weight loss. My 1st line of treatment was 6 cycles of FCR. Ibrunitib is available but it's very expensive. Probably this medicine will be in reach for common man in 2-3 years time. Finally
After having CR for 5 years, oncologist decided to start treatment in next few days. Primary driver is node size and weight loss. My 1st line of treatment was 6 cycles of FCR. Ibrunitib is available but it's very expensive. Probably this medicine will be in reach for common man in 2-3 years time. Finally
mag1309
in
CLL Support
7 years ago
Post FCR - stopping Aciclovir
I finished FCR just over 3 months ago. I actually only had 5 sessions as I had responded so well. For the first 6 weeks or so, I was on cloud nine, but then all my muscles started aching. I felt like an old woman when getting out of bed in the morning, or getting up from a chair. My GP said lots
I finished FCR just over 3 months ago. I actually only had 5 sessions as I had responded so well. For the first 6 weeks or so, I was on cloud nine, but then all my muscles started aching. I felt like an old woman when getting out of bed in the morning, or getting up from a chair. My GP said lots
Grannajan
in
CLL Support
7 years ago
Feeling worse after FCR treatment.
Anyone here had FCR treatment? I have post chemo questions. I have a question...post-chemo question. Did you feel mentally different? Some days I feel so down and so blah, it's hard to explain. I don't feel like myself. Like I strain to smile and put so much energy into smiling and it feels fake but
Anyone here had FCR treatment? I have post chemo questions. I have a question...post-chemo question. Did you feel mentally different? Some days I feel so down and so blah, it's hard to explain. I don't feel like myself. Like I strain to smile and put so much energy into smiling and it feels fake but
sunflwerchild
in
CLL Support
7 years ago
New to the group (not at all new to CLL!). Thought I'd say hello...
As this is a public forum, I don't want to go into specifics about how I did it (you can PM me if you wanna know), but I took steps to reduce the side effects of the chemo (I didn't know very much about Rituximab or
Fludarabine
but I'd heard about Cyclophosphamide and I knew enough to know that it was
As this is a public forum, I don't want to go into specifics about how I did it (you can PM me if you wanna know), but I took steps to reduce the side effects of the chemo (I didn't know very much about Rituximab or
Fludarabine
but I'd heard about Cyclophosphamide and I knew enough to know that it was
Hidden
in
CLL Support
7 years ago
Worried about the numbers about to start FCR
Hello, After optimistically signing up to the FLAIR trial last week, we got the call yesterday to say Mum had been randomised to receive FCR which was a little disappointing. We were told that they are still awaiting all results, but her CLL infiltration was very high at 75%. I am now worried sick that
Hello, After optimistically signing up to the FLAIR trial last week, we got the call yesterday to say Mum had been randomised to receive FCR which was a little disappointing. We were told that they are still awaiting all results, but her CLL infiltration was very high at 75%. I am now worried sick that
Pinkvixon
in
CLL Support
7 years ago
First Online Electronic Blood Test Results on Patients Know Best
Just writing to say I've just accessed my first set of blood test results electronically via the online system provided by organisation "Patients Know Best: https://www.patientsknowbest.com/ I think this has been rolled out to a number of Health authorities, I'm with OUH. Please reply if you are also
Just writing to say I've just accessed my first set of blood test results electronically via the online system provided by organisation "Patients Know Best: https://www.patientsknowbest.com/ I think this has been rolled out to a number of Health authorities, I'm with OUH. Please reply if you are also
Ernest2
in
CLL Support
7 years ago
FCR selected
I've been randomly selected for Flair trial with FCR starting 11/4. I have to have chemo orally first of all as my white count is high and needs to be below 100 before I can have intravenously. I feel disappointed but not sure why. I think it's because my consultant and nurses have spoken since treatment
I've been randomly selected for Flair trial with FCR starting 11/4. I have to have chemo orally first of all as my white count is high and needs to be below 100 before I can have intravenously. I feel disappointed but not sure why. I think it's because my consultant and nurses have spoken since treatment
sallyplest
in
CLL Support
7 years ago
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