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FCR Cycle 4 (For CLL) - Itchy Rash
Hello all CLL enthusiasts. I have just finished cycle 4 of my 6 cycle FCR treatment after being on 8-9 years W&W. I am on the FLAIR trial, but got randomly sorted into the current treatment. In hindsight I am not too disappointed as FCR is the current gold standard treatment, it hasn't been too bad to
Hello all CLL enthusiasts. I have just finished cycle 4 of my 6 cycle FCR treatment after being on 8-9 years W&W. I am on the FLAIR trial, but got randomly sorted into the current treatment. In hindsight I am not too disappointed as FCR is the current gold standard treatment, it hasn't been too bad to
Rich316
in
CLL Support
8 years ago
IVIG Infusions
Hi, I am four years post FCR and have been suffering with lingering coughs following winter colds. At the end of last year i developed pneumonia following a cold in November. My hematologist has decided that I would benefit from IVIG infusions during the winter months, as he is worried I could damage
Hi, I am four years post FCR and have been suffering with lingering coughs following winter colds. At the end of last year i developed pneumonia following a cold in November. My hematologist has decided that I would benefit from IVIG infusions during the winter months, as he is worried I could damage
Colnegirl
in
CLL Support
8 years ago
Fitness during and after FCR treatment
Hi All, I hope you are 'well'. This is my first post. I was diagnosed with CLL in 2011 aged 44yrs. Have considered myself very fit enjoying long hikes and swimming. In June 2016 I did a 5k charity open water swim in 90minutes. I now find myself, next week, requiring a 6 x 1month treatment with FCR. Can
Hi All, I hope you are 'well'. This is my first post. I was diagnosed with CLL in 2011 aged 44yrs. Have considered myself very fit enjoying long hikes and swimming. In June 2016 I did a 5k charity open water swim in 90minutes. I now find myself, next week, requiring a 6 x 1month treatment with FCR. Can
rsw147
in
CLL Support
8 years ago
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Ritusimab/Fludarabine
It has been recommended by my specialist that I have a six month round of treatment with the above two drugs. One month on the tablets, one month intravenous, for a period of six months. I live in Canada. Has anyone else had experience with these drugs. If so, would you mind sharing your experience
It has been recommended by my specialist that I have a six month round of treatment with the above two drugs. One month on the tablets, one month intravenous, for a period of six months. I live in Canada. Has anyone else had experience with these drugs. If so, would you mind sharing your experience
halfdiamond
in
CLL Support
8 years ago
Daughter of Newly Diagnosed CLL Patient - 3 Weeks Until Chemotherapy - Any information greatly appreciated!
Brand new to this forum, not a patient myself. My father was diagnosed this month and is already scheduled for treatment to begin in 4 weeks. Seems that many of you had lengthy W&W periods, but 5 years passed during which my father went without even visiting his GP. This was discovered this month, with
Brand new to this forum, not a patient myself. My father was diagnosed this month and is already scheduled for treatment to begin in 4 weeks. Seems that many of you had lengthy W&W periods, but 5 years passed during which my father went without even visiting his GP. This was discovered this month, with
LaurenM427
in
CLL Support
8 years ago
Atrial fibrillation on Imbruvica
Just had surgery for a hernia, stopped Imbruvica for a week before, holding off for another week before re starting. Really feel that advice to do so was good, healing is impaired with this medication. During routine pre opereative evaluation i was found to have premature Atrial contractions(PAC). and
Just had surgery for a hernia, stopped Imbruvica for a week before, holding off for another week before re starting. Really feel that advice to do so was good, healing is impaired with this medication. During routine pre opereative evaluation i was found to have premature Atrial contractions(PAC). and
Lenny123
in
CLL Support
8 years ago
IBRUTINIB - for 21 months, now stopped
It's been a year or so since I last posted about my Ibrutinib progress. Here is my latest situation. After FCR failure, I was put on Ibrutinib. This did its work and I was on the miracle drug for 21 months. Then suddenly my kidney function deteriorated dramatically and my blood calcium level became
It's been a year or so since I last posted about my Ibrutinib progress. Here is my latest situation. After FCR failure, I was put on Ibrutinib. This did its work and I was on the miracle drug for 21 months. Then suddenly my kidney function deteriorated dramatically and my blood calcium level became
Haileybury
in
CLL Support
8 years ago
After Ibrutinib failure, lymphocytes up again. Maybe another trial with Idealisib
Now 8 months since I had to stop the FLAIR trial of Ibrutinib and Rituximab due to side effects (severe and debilitating muscle and joint pain) I have been pretty well with bloods within normal limits. Now, sigh, the lymphocyte count is up again and the concern is how quickly this will increase. It
Now 8 months since I had to stop the FLAIR trial of Ibrutinib and Rituximab due to side effects (severe and debilitating muscle and joint pain) I have been pretty well with bloods within normal limits. Now, sigh, the lymphocyte count is up again and the concern is how quickly this will increase. It
romarin
in
CLL Support
8 years ago
11q CLL FCR hope
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5111525/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5111525/
Hidden
in
CLL Support
8 years ago
11q hope
11q (16%) unmutated young and fit started FCR
11q (16%) unmutated young and fit started FCR
Hidden
in
CLL Support
8 years ago
How remission is decided...
The nutcase in me is rearing her ugly head again! I saw my consultant last week, 2 weeks after completing 6 rounds of FCR. He is delighted with the scan results post round 4 and has said they are as near to normal as they could be. He is repeating the ct scan in Feb after I have recovered from the chrmo
The nutcase in me is rearing her ugly head again! I saw my consultant last week, 2 weeks after completing 6 rounds of FCR. He is delighted with the scan results post round 4 and has said they are as near to normal as they could be. He is repeating the ct scan in Feb after I have recovered from the chrmo
Bethan49
in
CLL Support
8 years ago
MRD Negative in the Bone Marrow - clinical trial update
Hi all just a quick update on me - I'm in europe starting cycle 13 of venetoclax on my ven plus obinutuzimab phase1b trial at Barts for relapsed and refractory patients. Still commuting every 3 months from Australja for my one day Appt and to collect my Venetoclax but just found out my bone marrow results
Hi all just a quick update on me - I'm in europe starting cycle 13 of venetoclax on my ven plus obinutuzimab phase1b trial at Barts for relapsed and refractory patients. Still commuting every 3 months from Australja for my one day Appt and to collect my Venetoclax but just found out my bone marrow results
Debinoz
in
CLL Support
8 years ago
Molecular remission after 6 rounds of FCR
Glad to report that after finishing 6 rounds of F C R and waiting 6 weeks to have bone marrow tested and CT scans done, I have been told I am in molecular remission for my CLL.. Happy days are here again. Keep a positive attitude and G d willing I live many more years
Glad to report that after finishing 6 rounds of F C R and waiting 6 weeks to have bone marrow tested and CT scans done, I have been told I am in molecular remission for my CLL.. Happy days are here again. Keep a positive attitude and G d willing I live many more years
ucallihaul
in
CLL Support
8 years ago
FCR/UNmutated IGVH
Any unmutated IGVH fellow CLLers out there ever do FCR as frontline? I ask please for responses to this direct question...not commentary on the topic in general. Thanks!
Any unmutated IGVH fellow CLLers out there ever do FCR as frontline? I ask please for responses to this direct question...not commentary on the topic in general. Thanks!
YjbCLL
in
CLL Support
8 years ago
New Treatments
In addition to the standard chemo-immunotherapy combinations of the past (These are regimens like
Fludarabine
-Cytoxan-Rituxan and Bendamustine-Rituxan) there are also newer anti-CD20 monoclonal antibodies with a drug called Gazyva (obinutuzumab).
In addition to the standard chemo-immunotherapy combinations of the past (These are regimens like
Fludarabine
-Cytoxan-Rituxan and Bendamustine-Rituxan) there are also newer anti-CD20 monoclonal antibodies with a drug called Gazyva (obinutuzumab).
Jemisavs5
in
CLL Support
8 years ago
2 mths ago told I had stage 4CLL from Canada
So this week started
fludarabine
tablets, 6 a day for 5 days, 60mg total. Then start in nov immunotherapy rituximab intravenous.
So this week started
fludarabine
tablets, 6 a day for 5 days, 60mg total. Then start in nov immunotherapy rituximab intravenous.
234me
in
CLL Support
8 years ago
Low phosphate levels
just completed round 1 of FCR ,and so far so good!! The only worry is low phosphate levels? Anyone else had this and any problems associated with this , as far as I understand it could be kidney related?
just completed round 1 of FCR ,and so far so good!! The only worry is low phosphate levels? Anyone else had this and any problems associated with this , as far as I understand it could be kidney related?
Megellen
in
CLL Support
8 years ago
Carry on CLLERS go dating...With Bethan and Nic!
Hi everyone! This site has been an amazing resource for us this year; a place of expert information; a comforting hug when worried ; an agony aunt off load page as well as a chance to meet new friends! @Bellabee and I have had a little sisterhood on line relationship going on where we have kept
Hi everyone! This site has been an amazing resource for us this year; a place of expert information; a comforting hug when worried ; an agony aunt off load page as well as a chance to meet new friends! @Bellabee and I have had a little sisterhood on line relationship going on where we have kept
Bethan49
in
CLL Support
8 years ago
I rang that bell loud and clear ... Then breathed. FCR over!
A week ago today I dressed up in my lovely blue dress and new polka dress shoes and went for my final day trip to the Phoenix Unit Sunderland for a bit of Fcr. The chair was comfortable and the nurse warm and reassuring...I was on an unatural high! Very excitable ! I told everyone it was my last
A week ago today I dressed up in my lovely blue dress and new polka dress shoes and went for my final day trip to the Phoenix Unit Sunderland for a bit of Fcr. The chair was comfortable and the nurse warm and reassuring...I was on an unatural high! Very excitable ! I told everyone it was my last
Bethan49
in
CLL Support
8 years ago
Painful scalp during chemo
I have now had 4 cycles of FCR and although my hair is thinning a lot (fortunately I had very thick hair to start with) , I haven't actually lost it. However, I have very painful patches on my scalp & wondered if anyone has any remedies for this.
I have now had 4 cycles of FCR and although my hair is thinning a lot (fortunately I had very thick hair to start with) , I haven't actually lost it. However, I have very painful patches on my scalp & wondered if anyone has any remedies for this.
Grannajan
in
CLL Support
8 years ago
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