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Tongue biting
Ok, this may be crazy, I keep biting the sides of my tongue and mouth since starting FCR. I have bruises and raw spots. This mostly happens at night but also during the day. Anyone else out there ever have this problem? Beth
Ok, this may be crazy, I keep biting the sides of my tongue and mouth since starting FCR. I have bruises and raw spots. This mostly happens at night but also during the day. Anyone else out there ever have this problem? Beth
Mosaicgigi
in
CLL Support
6 years ago
Chemo Side Effects FCR
Hi everyone! My dad is on his 4th round of what they call “aggressive chemo” for NHL. He is taking FCR with monthly infusions of antibodies,antibirala, antibiotics (to prevent shingles and pneumonia, as well as oral chemo and 7 days monthly of immune boosting injections. This round was particularly
Hi everyone! My dad is on his 4th round of what they call “aggressive chemo” for NHL. He is taking FCR with monthly infusions of antibodies,antibirala, antibiotics (to prevent shingles and pneumonia, as well as oral chemo and 7 days monthly of immune boosting injections. This round was particularly
Whitehouse_77
in
CLL Support
6 years ago
Dark Urine with Imbruvica ?
Back in 09 learned I had stage 4 CLL & went through 6 mo of FCR chemo....all went well until Aug of 17 when my white count started rising 10k per month... in Nov I started Imbruvica & my swollen neck glands went down in the first week while my WBC rose 30k... for the last mo my WBC has been slowly
Back in 09 learned I had stage 4 CLL & went through 6 mo of FCR chemo....all went well until Aug of 17 when my white count started rising 10k per month... in Nov I started Imbruvica & my swollen neck glands went down in the first week while my WBC rose 30k... for the last mo my WBC has been slowly
emarine
in
CLL Support
6 years ago
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FCR on Flair trial at Christie Hospital
71yr male diagnosed 2yrs ago, CLL (Binet stage B) researched specialists and decided on Dr Bloor at Christie Hospital in Manchester, an excellent choice. W&W for 18 months until he found a mass of raised lymph nodes in my abdomen. Dr Bloor suggested the Flair trial and I was randomised for FCR beginning
71yr male diagnosed 2yrs ago, CLL (Binet stage B) researched specialists and decided on Dr Bloor at Christie Hospital in Manchester, an excellent choice. W&W for 18 months until he found a mass of raised lymph nodes in my abdomen. Dr Bloor suggested the Flair trial and I was randomised for FCR beginning
Anthonymac
in
CLL Support
6 years ago
2017 - Bright and Dark
Greeting All, Always lurking and reading posts. After 6 x FCR in March '14 I'm still plodding on and even though my Consultant appointments have narrowed to 6 Weeks apart, there's been many bright spells during 2017 - in particular, 1. Free Car Parking at the hospital. (Once paid £22 during FCR Treatment
Greeting All, Always lurking and reading posts. After 6 x FCR in March '14 I'm still plodding on and even though my Consultant appointments have narrowed to 6 Weeks apart, there's been many bright spells during 2017 - in particular, 1. Free Car Parking at the hospital. (Once paid £22 during FCR Treatment
Bribin
in
CLL Support
6 years ago
Happy 2018... Choose your Pooh Bear Character!
Happy New year to you and all here! This forum becomes our sounding board, our counselling session, our font of knowledge, our diary to log and share our darkest thoughts, our laughter but most importantly our support. It's a while since I wrote on here but I still dip in constantly. I'm now just over
Happy New year to you and all here! This forum becomes our sounding board, our counselling session, our font of knowledge, our diary to log and share our darkest thoughts, our laughter but most importantly our support. It's a while since I wrote on here but I still dip in constantly. I'm now just over
Bethan49
in
CLL Support
6 years ago
Watch and wait is over
Hi all, I was diagnosed 3 years ago with CLL, I am now 53 yo and with wbc up and platelets down as well as swollen lymph nodes and enlarged spleen my Doctor has started me on treatments. I am going to Dana Farber and taking part of a study that combines Ibrutinib with standard FCR treatment. I will take
Hi all, I was diagnosed 3 years ago with CLL, I am now 53 yo and with wbc up and platelets down as well as swollen lymph nodes and enlarged spleen my Doctor has started me on treatments. I am going to Dana Farber and taking part of a study that combines Ibrutinib with standard FCR treatment. I will take
Mosaicgigi
in
CLL Support
6 years ago
stopped imbruvica
I was on imbruvica (3 pills 420) for about 3 months and CBC test came back better, however I got so sick my doctor stopped me that was about 10 weeks ago and my CBC tests looked almost normal. he wants me to try one pill a day but there is no way I am taking imbruvica again. I had chemo FCR in 2009
I was on imbruvica (3 pills 420) for about 3 months and CBC test came back better, however I got so sick my doctor stopped me that was about 10 weeks ago and my CBC tests looked almost normal. he wants me to try one pill a day but there is no way I am taking imbruvica again. I had chemo FCR in 2009
The_Eagle
in
CLL Support
6 years ago
Fcr started
First post after lots of reading on here. It has all been very helpful. I am male aged 66 diagnosed 4 years ago after hernia surgery If not for that I would not have found out until 5 months ago when I was admitted to hospital with anemia (heamoglobin of 6) received 4 units of blood initially followed
First post after lots of reading on here. It has all been very helpful. I am male aged 66 diagnosed 4 years ago after hernia surgery If not for that I would not have found out until 5 months ago when I was admitted to hospital with anemia (heamoglobin of 6) received 4 units of blood initially followed
Alex15alex
in
CLL Support
6 years ago
Just finished FIRST round FCR - what will happen next?
They waited for the third day to infuse the Rituximab, but I had Cyclophosphamide and
Fludarabine
all three days. I had only one tiny issue with a scratchy throat and itchy tongue with the Rituximad which they knocked back quickly with Benadryl.
They waited for the third day to infuse the Rituximab, but I had Cyclophosphamide and
Fludarabine
all three days. I had only one tiny issue with a scratchy throat and itchy tongue with the Rituximad which they knocked back quickly with Benadryl.
Marie-54
in
CLL Support
7 years ago
Urgent question: low platelets
My husband Murray is in a very precarious state right now and I would sure appreciate your input. Just to summarize - he is 58, diagnosed 3 1/2 years ago but with symptoms for many years before that, 13q, 11q & trisomy 12, relapsed quickly after FCR, on ibrutinib for 9 months, scheduled for stem cell
My husband Murray is in a very precarious state right now and I would sure appreciate your input. Just to summarize - he is 58, diagnosed 3 1/2 years ago but with symptoms for many years before that, 13q, 11q & trisomy 12, relapsed quickly after FCR, on ibrutinib for 9 months, scheduled for stem cell
Glees
in
CLL Support
6 years ago
burning sensation on my scalp
I am Anja (61) from the Netherlands. I have had CLL since 2010. FCR in 2012. I am participating in the ACP 196 study since March this year. Then I started Ibrutinib. It has gone well for a while but since a month I have a very burning sensation on my scalp, and stitches and hair loss. Also nerve pains
I am Anja (61) from the Netherlands. I have had CLL since 2010. FCR in 2012. I am participating in the ACP 196 study since March this year. Then I started Ibrutinib. It has gone well for a while but since a month I have a very burning sensation on my scalp, and stitches and hair loss. Also nerve pains
jroon08
in
CLL Support
6 years ago
Dr. Furman on the Diminishing Role of FCR
Hi, As we're getting ready to head to ASH this week, we wanted to post in response to a query that was posted originally on the CLLSLL io group forum. Dr. Richard Furman is their medical advisor and his response really puts the comparison of a therapy that has existed for decades with a therapy that
Hi, As we're getting ready to head to ASH this week, we wanted to post in response to a query that was posted originally on the CLLSLL io group forum. Dr. Richard Furman is their medical advisor and his response really puts the comparison of a therapy that has existed for decades with a therapy that
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Round 2 FCR complete
I have completed round 2 of FCR and am past the lowest point (10 days post) so am starting to recover. The infusion days themselves were easy. I have a port so it is a simple hook up and away they go. No reactions day one and two, but by end of day 3 I was starting to feel some nausea. I take Ondansetron
I have completed round 2 of FCR and am past the lowest point (10 days post) so am starting to recover. The infusion days themselves were easy. I have a port so it is a simple hook up and away they go. No reactions day one and two, but by end of day 3 I was starting to feel some nausea. I take Ondansetron
Marie-54
in
CLL Support
6 years ago
Jules is back and my plans for 2018 are
Hi Everyone Some of you know I do the odd Cycle ride for Charity, CLLSA and Bloodwise. To the unfortunate new members to this site allow me to introduce myself. I'm Jules AKA as The Flyer I have been on Watch and Wait for nearly 8 years now and decided I would try and help raise some funds - so far
Hi Everyone Some of you know I do the odd Cycle ride for Charity, CLLSA and Bloodwise. To the unfortunate new members to this site allow me to introduce myself. I'm Jules AKA as The Flyer I have been on Watch and Wait for nearly 8 years now and decided I would try and help raise some funds - so far
TheFlyer
in
CLL Support
6 years ago
FCR Cycle one
Had cycle 1 FCR - was a little rough but come time for 2nd cycle my BW is normal why continue
Had cycle 1 FCR - was a little rough but come time for 2nd cycle my BW is normal why continue
Mathild
in
CLL Support
6 years ago
FCR + Ibrutinib trial
This is a wonderful community and I thank everyone who responded to my previos post with an opinion or just a message of support. I have the opportunity to participate in a trial that combines ibrutinib with FCR for 6 months and after that ends i would continue to take the ibrutinib for 2 years. I’
This is a wonderful community and I thank everyone who responded to my previos post with an opinion or just a message of support. I have the opportunity to participate in a trial that combines ibrutinib with FCR for 6 months and after that ends i would continue to take the ibrutinib for 2 years. I’
Haesl
in
CLL Support
6 years ago
Husband with CLL in Rituximab Therapy
Hello my name is Aylin. I'm new in the group. We live in Turkey so please forgive me when I make errors in my English :) My husband was diagnosed in 2012 with CLL at the age of 48. He didn't need a treatment until 2015. He had a FCR tratment when his white cells were very high and the platelet level
Hello my name is Aylin. I'm new in the group. We live in Turkey so please forgive me when I make errors in my English :) My husband was diagnosed in 2012 with CLL at the age of 48. He didn't need a treatment until 2015. He had a FCR tratment when his white cells were very high and the platelet level
aylinozel
in
CLL Support
6 years ago
Just diagnosed
I don't what to think. The doctor said my FISH test is negative; no chromosomal damage. He is proposing FCR early treatment to the hospital tumor board based on my age of 55. I may lose my job and insurance soon. So if FCR is an option, I hope I can get it asap.
I don't what to think. The doctor said my FISH test is negative; no chromosomal damage. He is proposing FCR early treatment to the hospital tumor board based on my age of 55. I may lose my job and insurance soon. So if FCR is an option, I hope I can get it asap.
TXteacher
in
CLL Support
6 years ago
Venetoclax CLL 11q, Trisomy 12, MDS
Good day to everyone. I observed for a couple of weeks and felt the love. So I decided to post and share my story. Husband was Diagnosed with CLL with MDS in 2008. ( he’s now 50 ) WW until August 2011 FCR August 2011 -January 2012 - reached good #’s and he felt great until March 2015 when CLL came
Good day to everyone. I observed for a couple of weeks and felt the love. So I decided to post and share my story. Husband was Diagnosed with CLL with MDS in 2008. ( he’s now 50 ) WW until August 2011 FCR August 2011 -January 2012 - reached good #’s and he felt great until March 2015 when CLL came
Midgey_
in
CLL Support
6 years ago
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