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Cll suport
Hi i have cll. Treated 7x fcr 15 month ago. I have advised ibrutinib. Any one tll me his experince about ibrutinib. Any one tell me about avilibility.
Hi i have cll. Treated 7x fcr 15 month ago. I have advised ibrutinib. Any one tll me his experince about ibrutinib. Any one tell me about avilibility.
Dpt517
in
CLL Support
4 years ago
Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.
With no improvement in this time a bone marrow biopsy now indicates that the loss of rbc production has most likely been caused by FCR (in particular
Fludarabine
). I completed 4 cycles in June 2018 with a good result.
With no improvement in this time a bone marrow biopsy now indicates that the loss of rbc production has most likely been caused by FCR (in particular
Fludarabine
). I completed 4 cycles in June 2018 with a good result.
Jotame
in
CLL Support
5 years ago
What is the difference between non fdg avid node and fdg avid node?
In my latest PET non fdg avid nodes were found after 4 cycle of FCR. What is the difference between nod fdg avid and fdg avid nodes.?
In my latest PET non fdg avid nodes were found after 4 cycle of FCR. What is the difference between nod fdg avid and fdg avid nodes.?
Supratim
in
CLL Support
5 years ago
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Lymph nodes after 6 rounds of FCR
Hi, My friend completed 6 rounds of FCR last month. Still i can see small small lymph nodes near neck, shoulder. But I am seeing that lymph node has increased in size little bit compared last month. Is this common? Anybody faced same like this. Please please help me to get more info on this.
Hi, My friend completed 6 rounds of FCR last month. Still i can see small small lymph nodes near neck, shoulder. But I am seeing that lymph node has increased in size little bit compared last month. Is this common? Anybody faced same like this. Please please help me to get more info on this.
pbaddi
in
CLL Support
5 years ago
Any post FCR warriors struggling with the cold?
I finished FCR a year ago and in the past couple of months or so have begun to feel more like the old me and less tired. However, in this weather in the UK (8 degrees now, but was below freezing the last few days) I feel miserably cold. I am in bed with an electric blanket, 2 jumpers, 2 T shirts and
I finished FCR a year ago and in the past couple of months or so have begun to feel more like the old me and less tired. However, in this weather in the UK (8 degrees now, but was below freezing the last few days) I feel miserably cold. I am in bed with an electric blanket, 2 jumpers, 2 T shirts and
Mandy56
in
CLL Support
5 years ago
Use of MRD Status Following Obinutuzumab/Ibrutinib to Guide Subsequent Intensification of Therapy in CLL
those patients with a complete response (CR) and bone marrow MRD status of less than .01% were treated with 6 months of ibrutinib; whereas those achieving a partial response (PR), or a CR and bone marrow MRD greater than or equal to .01%, received 6 months of ibrutinib plus combination therapy with
fludarabine
those patients with a complete response (CR) and bone marrow MRD status of less than .01% were treated with 6 months of ibrutinib; whereas those achieving a partial response (PR), or a CR and bone marrow MRD greater than or equal to .01%, received 6 months of ibrutinib plus combination therapy with
fludarabine
Jm954
Administrator
in
CLL Support
5 years ago
EHA 2019: Dr. Maloney on CAR-T and Dr. Davids of Chemo-Immunotherapy combinations
David Maloney is world expert in CAR-T therapy and was one of my doctors when I got my genetically modified cells in Seattle last year. Please enjoy their deeper dive into CAR-T from our conversation at EHA in Amsterdam. See: https://cllsociety.org/2019/11/eha-2019-dr-maloney-on-car-t-therapy-for-cll-chronic-lymphocytic-leukemia
David Maloney is world expert in CAR-T therapy and was one of my doctors when I got my genetically modified cells in Seattle last year. Please enjoy their deeper dive into CAR-T from our conversation at EHA in Amsterdam. See: https://cllsociety.org/2019/11/eha-2019-dr-maloney-on-car-t-therapy-for-cll-chronic-lymphocytic-leukemia
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
So far so good.
I posted about 6 months ago that 1 round of FCR nearly killed me. My Hemoglobin dropped to 45 and I needed many transfusions. They decided to abandon treatment and was put back on watch and wait. After my appointment today, all bloods are still in normal range. Hopefully, the 1 round of treatment will
I posted about 6 months ago that 1 round of FCR nearly killed me. My Hemoglobin dropped to 45 and I needed many transfusions. They decided to abandon treatment and was put back on watch and wait. After my appointment today, all bloods are still in normal range. Hopefully, the 1 round of treatment will
Racing1961
in
CLL Support
5 years ago
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
5 years ago
Novel Combos Are Shaking Up the CLL Landscape but FCR still has its place
They designed a phase II study testing the combination of ibrutinib,
fludarabine
, cyclophosphamide, and obinutuzumab (iFCG) for the frontline treatment of patients with CLL with mutated IGHV and without TP53 aberrations.
They designed a phase II study testing the combination of ibrutinib,
fludarabine
, cyclophosphamide, and obinutuzumab (iFCG) for the frontline treatment of patients with CLL with mutated IGHV and without TP53 aberrations.
Jm954
Administrator
in
CLL Support
5 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
5 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
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
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
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
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
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