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Myelodysplasia (MDS)
Hi I haven't been on our community site for 2yrs since then I have had 4 cycles of FCR , unfortunately they stopped the last 2 cycles due to nutropenia now I have been dignosed with MDS ( Myelodysplasia ) is there anyone else that has this sorry about my spelling I have a bad bout of the flu. God bless
Hi I haven't been on our community site for 2yrs since then I have had 4 cycles of FCR , unfortunately they stopped the last 2 cycles due to nutropenia now I have been dignosed with MDS ( Myelodysplasia ) is there anyone else that has this sorry about my spelling I have a bad bout of the flu. God bless
chevy
in
CLL Support
9 years ago
HOLY WHITE COUNT!!
HI all, Well W&W is finally over (that wasnt very long) I started my clinical trial of iFCR and so far so good. Not noticing and side effects of the ibrutinib. FCR starts tuesday so we will see the shit hit the fan then :) He is the crazy part for all of you concerned about how high your white count
HI all, Well W&W is finally over (that wasnt very long) I started my clinical trial of iFCR and so far so good. Not noticing and side effects of the ibrutinib. FCR starts tuesday so we will see the shit hit the fan then :) He is the crazy part for all of you concerned about how high your white count
enelson3
in
CLL Support
9 years ago
IVIG for bone marrow suppression?
Hi everyone Is IVIG useful when you are bone marrow suppression by FCR treatment or progression of CLL? Do anyone have such experience? Miee
Hi everyone Is IVIG useful when you are bone marrow suppression by FCR treatment or progression of CLL? Do anyone have such experience? Miee
Miee
in
CLL Support
9 years ago
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participate in online study cll Aus
Hi everyone, I'm in Sydney, Australia and recently completed an anonymous phone survey regarding listing of Ibrutinib on PBS. The survey was asking about cll patients' overall experience of the disease, diagnosis and thoughts on treatment options. You need not have had treatment already to participate
Hi everyone, I'm in Sydney, Australia and recently completed an anonymous phone survey regarding listing of Ibrutinib on PBS. The survey was asking about cll patients' overall experience of the disease, diagnosis and thoughts on treatment options. You need not have had treatment already to participate
Chrisfer
in
CLL Support
9 years ago
FLAIR Trial - ErnieUK More Dehydration Round 5 FCR
Now I can never normally decide of the
Fludarabine
and the Cyclophosphamide which to take first. The
Fludarabine
have a bitter taste so are the ones to make me start feeling I want to be sick.
Now I can never normally decide of the
Fludarabine
and the Cyclophosphamide which to take first. The
Fludarabine
have a bitter taste so are the ones to make me start feeling I want to be sick.
Ernest2
in
CLL Support
9 years ago
COPING STRATEGIES for living better with CLL - Part 3 - some extra tips for making good use of "Watch and "Wait"
It should mention your immuno-compromised status, and if you’ve ever had
Fludarabine
(part of FCR treatment), it should explain that any blood transfusion you’re given, must be
IRRADIATED blood.
It should mention your immuno-compromised status, and if you’ve ever had
Fludarabine
(part of FCR treatment), it should explain that any blood transfusion you’re given, must be
IRRADIATED blood.
PaulaS
Volunteer
in
CLL Support
9 years ago
Taste buds
Following six treatments with fcr i now seem to have lost my sence of taste and smell is this normal.
Following six treatments with fcr i now seem to have lost my sence of taste and smell is this normal.
d011y
in
CLL Support
9 years ago
Chlorambucil
Hi All, Any one having some feed back on this medicine? Is it better option than FCR? Regards
Hi All, Any one having some feed back on this medicine? Is it better option than FCR? Regards
AAli
in
CLL Support
9 years ago
Ibrutinib - 8 months on
It's been a while since my last post so, as I am making real progress, here are my latest thoughts. To recap, Dr Schuh in Oxford put me on Ibrutinib 8 months ago as a named patient as was the process then. I am FCR refractory and 11Q deletion. I also have bi-lateral pleural effusions. Initially,
It's been a while since my last post so, as I am making real progress, here are my latest thoughts. To recap, Dr Schuh in Oxford put me on Ibrutinib 8 months ago as a named patient as was the process then. I am FCR refractory and 11Q deletion. I also have bi-lateral pleural effusions. Initially,
Haileybury
in
CLL Support
9 years ago
Starting FCR in 10 days
Hi Everyone I begin FCR on Tuesday 19th May. I've had lots of helpful advice from the hospital, such as the need to drink 2-3 litres of water a day prior to and during the treatment, but just wanted to know if anyone has any additional advice on preparing for FCR both physically and emotionally. Despite
Hi Everyone I begin FCR on Tuesday 19th May. I've had lots of helpful advice from the hospital, such as the need to drink 2-3 litres of water a day prior to and during the treatment, but just wanted to know if anyone has any additional advice on preparing for FCR both physically and emotionally. Despite
Markdce
in
CLL Support
9 years ago
Flair trial v FCR
I will ask the consultant next time I see here but in the meantime I thought I would ask here The registrar at my last visit s aid when treatment is needed we can offer me the above. On a trial you monitored a lot more closely I would assume but how would it compare to having FCR ? I am thinking
I will ask the consultant next time I see here but in the meantime I thought I would ask here The registrar at my last visit s aid when treatment is needed we can offer me the above. On a trial you monitored a lot more closely I would assume but how would it compare to having FCR ? I am thinking
Hidden
in
CLL Support
9 years ago
1 year on after FCR
Hi guys, havent been around much lately so thought i would pop in and say hello. Just been for my 1year post chemo check-up. I have had some issues with low CD4 and as im allergic to Co-Trim i have to have a pentamadine inhaler which i hate. Well the fantastic news is that my bloods are all bang on the
Hi guys, havent been around much lately so thought i would pop in and say hello. Just been for my 1year post chemo check-up. I have had some issues with low CD4 and as im allergic to Co-Trim i have to have a pentamadine inhaler which i hate. Well the fantastic news is that my bloods are all bang on the
grizzlebear
in
CLL Support
9 years ago
FLAIR Trial - ErnieUK Dehydration in Round 4 FCR (and home made soup)
The
Fludarabine
and Cyclophosphamide dosage were both reduced as I’m struggling in the bone marrow department to manufacture red and white cells: -
Fludarabine
from x5 to x4 tablets (10mg each) -Cyclophosphamide from x6 to x4 tablets (50mg each) I guess that dosage is not likely to increase again in future
The
Fludarabine
and Cyclophosphamide dosage were both reduced as I’m struggling in the bone marrow department to manufacture red and white cells: -
Fludarabine
from x5 to x4 tablets (10mg each) -Cyclophosphamide from x6 to x4 tablets (50mg each) I guess that dosage is not likely to increase again in future
Ernest2
in
CLL Support
9 years ago
BLOOD COUNTS
Starting FCR next week and wondering just how BAD my blood count is - I have just taken sight of this today so being a bit vague about things just want to know whereabouts I would fall - I was on watch and wait for about 8 years WITHOUT knowing it UNTIL I was officially diagnosed just over a month ago
Starting FCR next week and wondering just how BAD my blood count is - I have just taken sight of this today so being a bit vague about things just want to know whereabouts I would fall - I was on watch and wait for about 8 years WITHOUT knowing it UNTIL I was officially diagnosed just over a month ago
Strong-happy2
in
CLL Support
9 years ago
Pointers for starting FCR
Hi Guys n Gals Firstly, just going to be starting FCR next week and having read through this site have found it very informative. What for the actual treatment should I do? - I am going to be in a ward and overnight stay for the first cycle of "R" and then I get out the next day - I think for day one
Hi Guys n Gals Firstly, just going to be starting FCR next week and having read through this site have found it very informative. What for the actual treatment should I do? - I am going to be in a ward and overnight stay for the first cycle of "R" and then I get out the next day - I think for day one
Strong-happy2
in
CLL Support
9 years ago
Do FCR trials ever end early when the results are very favorable?
Hi I am new to this community but not new to CLL. Was diagnosed in 9/2009 with a WBC of 28.5k after a routine physical and was totally asymptomatic. Just turned 50 also at the time a few months before which was a little ironic. Anyway, other prognosticators like Del 13q, IGVH mutated, low Bm2, and 1
Hi I am new to this community but not new to CLL. Was diagnosed in 9/2009 with a WBC of 28.5k after a routine physical and was totally asymptomatic. Just turned 50 also at the time a few months before which was a little ironic. Anyway, other prognosticators like Del 13q, IGVH mutated, low Bm2, and 1
CClaver27
in
CLL Support
9 years ago
experience CLL Ibrutinib Colitis
Hi Maybe there is a better route out of this? I am a man in the UK and was diagnosed with CLL aged 38 in 2007. I had six rounds of FCR and achieved MRD. In January 2011 ill with EBV for a year. June 2012 started FCR again. Five times. January 2013 0.0 neutrophils for eight days. May 2013 dexamethasone
Hi Maybe there is a better route out of this? I am a man in the UK and was diagnosed with CLL aged 38 in 2007. I had six rounds of FCR and achieved MRD. In January 2011 ill with EBV for a year. June 2012 started FCR again. Five times. January 2013 0.0 neutrophils for eight days. May 2013 dexamethasone
Corin850
in
CLL Support
9 years ago
Arzerra (ofatumumab) PBS listed in Australia
[i]ARZERRA (ofatumumab) in combination with chlorambucil will be listed on the Pharmaceutical Benefits Scheme as of 01 Apr 2015 for patients with CLL [u]who have not received prior therapy and are inappropriate for
fludarabine
-based therapy[/u], GlaxoSmithKline has said.
[i]ARZERRA (ofatumumab) in combination with chlorambucil will be listed on the Pharmaceutical Benefits Scheme as of 01 Apr 2015 for patients with CLL [u]who have not received prior therapy and are inappropriate for
fludarabine
-based therapy[/u], GlaxoSmithKline has said.
AussieNeil
Partner
in
CLL Support
9 years ago
Stopping FCR early
Hi Everyone, My doctor has cancelled the FC in my 6th and final dose of FCR. ( I am in US so I get all IV meds and have 11q deletion/CD38+) My preliminary bloodwork done last Friday (WBC 1.5 platelets 97,000) so the CBC was repeated this Monday to check WBC ( WBC of 2.2 platelets 78,000) I received
Hi Everyone, My doctor has cancelled the FC in my 6th and final dose of FCR. ( I am in US so I get all IV meds and have 11q deletion/CD38+) My preliminary bloodwork done last Friday (WBC 1.5 platelets 97,000) so the CBC was repeated this Monday to check WBC ( WBC of 2.2 platelets 78,000) I received
Jomary8505
in
CLL Support
9 years ago
The future for CLL?
In the last few years, we've seen some great advances in the efficacy of new treatments for CLL, with very encouraging progress towards a cure. There has even been talk that we may have achieved the breakthrough that Imatinib (perhaps better know as Gleevec) was for a sister leukaemia to CLL - CML or
In the last few years, we've seen some great advances in the efficacy of new treatments for CLL, with very encouraging progress towards a cure. There has even been talk that we may have achieved the breakthrough that Imatinib (perhaps better know as Gleevec) was for a sister leukaemia to CLL - CML or
AussieNeil
Partner
in
CLL Support
9 years ago
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