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Hair loss
I have appointment today to find out which arm I will be on for FLAIR trial and I'm afraid a fit of vanity has gripped me. I wondered can anyone give me any details regarding hair loss with FCR or Ibrutinin/Rituxamab.
I have appointment today to find out which arm I will be on for FLAIR trial and I'm afraid a fit of vanity has gripped me. I wondered can anyone give me any details regarding hair loss with FCR or Ibrutinin/Rituxamab.
sallyplest
in
CLL Support
7 years ago
Need for irradiated transfusions following FCR
Hi everyone, just been given irradiated transfusion owing to aenemia. Was told that because I had fluradabin years ago that this is the procedure. Does FCR contain fluradabin.?
Hi everyone, just been given irradiated transfusion owing to aenemia. Was told that because I had fluradabin years ago that this is the procedure. Does FCR contain fluradabin.?
Broadbent
in
CLL Support
7 years ago
Key questions to ask your consultant
After 5 years treated with
Fludarabine
(did not work, CLL was becoming aggressive), then was lucky that combination of
Fludarabine
and Cyclophosmadide (spelling?)
After 5 years treated with
Fludarabine
(did not work, CLL was becoming aggressive), then was lucky that combination of
Fludarabine
and Cyclophosmadide (spelling?)
Davdow
in
CLL Support
7 years ago
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The start for me on FCR.
Hi all. Though its about time I posted and said hi after following this wonderful resource for so long. WBC at high 80s, and slow growing lymph nodes but plummeting platelets, crushing fatigue and night sweats. So here I am sitting on a bed having my first cycle of rituximab ( FCR ) . Wish me luck and
Hi all. Though its about time I posted and said hi after following this wonderful resource for so long. WBC at high 80s, and slow growing lymph nodes but plummeting platelets, crushing fatigue and night sweats. So here I am sitting on a bed having my first cycle of rituximab ( FCR ) . Wish me luck and
sandydog
in
CLL Support
7 years ago
Blood clots after chemo?
I completed 5 months of FCR in September. This was a difficult period but successful and I returned to work after a 2 month recuperation. I was slowly recovering strength and even started light workouts. Then 3 weeks ago I had terrible pain in my flank and went to the ER. Diagnosed with lung embolisms
I completed 5 months of FCR in September. This was a difficult period but successful and I returned to work after a 2 month recuperation. I was slowly recovering strength and even started light workouts. Then 3 weeks ago I had terrible pain in my flank and went to the ER. Diagnosed with lung embolisms
brian_in_Seattle
in
CLL Support
7 years ago
Pottery workshop.?
I have been invited to a pottery workshop to make a couple of pots. At end of cycle 1 of FCR. Feeling great, but.... I suspect too much of a risk, even with gloves and mask... thoughts?
I have been invited to a pottery workshop to make a couple of pots. At end of cycle 1 of FCR. Feeling great, but.... I suspect too much of a risk, even with gloves and mask... thoughts?
abikaasa
in
CLL Support
7 years ago
Ask the expert Ohio state talk. Slide 46. PFS for treatment naïve patients on imbruvica Vs TN FCR patients.
There were only 31 patience on the imbruvica group in blue. This group had mutated and unmutated patients combined. Two were 17 P deleted as well. Unfortunately one of the 17p patients progressed after 4 months but the other I think has not progressed. A few people came off the trial for other
There were only 31 patience on the imbruvica group in blue. This group had mutated and unmutated patients combined. Two were 17 P deleted as well. Unfortunately one of the 17p patients progressed after 4 months but the other I think has not progressed. A few people came off the trial for other
Hoffy
in
CLL Support
7 years ago
too short of w & w
I will try and keep this short but need some advice on talking to our doctor. My husband Brett finished FCR 15 months ago, 6 months ago his BMB showed all clear now ending the happy story. About 5 months ago he had a swollen lymph node in his neck. Dr confirmed that yes he thought the CLL was active
I will try and keep this short but need some advice on talking to our doctor. My husband Brett finished FCR 15 months ago, 6 months ago his BMB showed all clear now ending the happy story. About 5 months ago he had a swollen lymph node in his neck. Dr confirmed that yes he thought the CLL was active
jules_c
in
CLL Support
7 years ago
High Altitude and CLL: Risk?
I have monitored your support group for a while now and appreciate all the shared information that can be found here. It has been very helpful over the last couple of years. First time writing. My husband is 61 years of age, diagnosed with CLL officially Oct. 2014, but high white counts as far back as
I have monitored your support group for a while now and appreciate all the shared information that can be found here. It has been very helpful over the last couple of years. First time writing. My husband is 61 years of age, diagnosed with CLL officially Oct. 2014, but high white counts as far back as
AGreenwoods
in
CLL Support
7 years ago
1st week on venetoclax - WOW, not what we expected...
After reviewing jtaeross's post from 3 months ago I wanted to share our experience on venetoclax. My husband just stared venetoclax 20mg we are on day 6 after failing on Ibrutinib after 18months and he is 17p, 52 years old - diagnosed at 45 It has been a hell of a week with threats of TML - he had to
After reviewing jtaeross's post from 3 months ago I wanted to share our experience on venetoclax. My husband just stared venetoclax 20mg we are on day 6 after failing on Ibrutinib after 18months and he is 17p, 52 years old - diagnosed at 45 It has been a hell of a week with threats of TML - he had to
NMMP
in
CLL Support
7 years ago
Chemotherapy vs Ibrutinib for CLL Frontline Treatment - Dr Susan O'Brien. 12 to 24% of FCR patients effectively cured 6 years after FCR
Anyone interested in the pros and cons of chemotherapy vs non-chemotherapy treatment should watch this 10 minute video by Dr Susan O’Brien, MD, University of California Irvine Medical Center, where [i]'she discusses frontline treatment options for patients with newly diagnosed chronic lymphocytic leukemia
Anyone interested in the pros and cons of chemotherapy vs non-chemotherapy treatment should watch this 10 minute video by Dr Susan O’Brien, MD, University of California Irvine Medical Center, where [i]'she discusses frontline treatment options for patients with newly diagnosed chronic lymphocytic leukemia
AussieNeil
Partner
in
CLL Support
7 years ago
Secondary BR Treatment
After being diagnosed in Jan 2013 went through immediate FCR which lasted eight months. This led to a three year remission after which the disease was again detected. Disease progression has been gradual but my Oncologist says further treatment with Retuxin/Bendamustine is very likely soon (he has been
After being diagnosed in Jan 2013 went through immediate FCR which lasted eight months. This led to a three year remission after which the disease was again detected. Disease progression has been gradual but my Oncologist says further treatment with Retuxin/Bendamustine is very likely soon (he has been
plett1234
in
CLL Support
7 years ago
Oxford update
Hi All I was at Oxford on Thursday it was nice to catch up with Dr Anna Schuh My Bloods were ok but I am now early stage B still all that means is more fundraising and still a way to go, Dr Schuh mentioned when I asked about the new treatments that in the next 2-3 years the will look to move away
Hi All I was at Oxford on Thursday it was nice to catch up with Dr Anna Schuh My Bloods were ok but I am now early stage B still all that means is more fundraising and still a way to go, Dr Schuh mentioned when I asked about the new treatments that in the next 2-3 years the will look to move away
TheFlyer
in
CLL Support
7 years ago
Yippee! Just had confirmed 2 more health related talking points; with which, I can bore the pants off everyone I meet. How lucky is that?
First off, be assured that although I post rarely, I do regularly read and digest the all the posts here. I have benefited from the wealth of knowledge found within the threads. Much as I would like to indulge in relating the nitty gritty of my new talking points. I will restrain myself and try to stick
First off, be assured that although I post rarely, I do regularly read and digest the all the posts here. I have benefited from the wealth of knowledge found within the threads. Much as I would like to indulge in relating the nitty gritty of my new talking points. I will restrain myself and try to stick
Bribin
in
CLL Support
7 years ago
My introduction
I was diagnosed with B cell CLL in 2001 and took FCR in 2003 and then had relaps in 2012 , so took BR in 2013 and again in 2016 March took RCV chemo. Now fr past 3 weeks started Ibnutrib treatment, 2x140 GMs PD. So wanted to gain experience from my bros n Sis , suffering from this diseases
I was diagnosed with B cell CLL in 2001 and took FCR in 2003 and then had relaps in 2012 , so took BR in 2013 and again in 2016 March took RCV chemo. Now fr past 3 weeks started Ibnutrib treatment, 2x140 GMs PD. So wanted to gain experience from my bros n Sis , suffering from this diseases
Anilbhard
in
CLL Support
7 years ago
3 Years past FCR
After a FCR ride from 10/13 -4/14, with more or less no side effects, I went in CR and MRD -! Since then, blood counts were always in normal range. I have been doing well since end of treatment, enjoying a normal life with quarterly or all six months checking in hospital After one year past treatment
After a FCR ride from 10/13 -4/14, with more or less no side effects, I went in CR and MRD -! Since then, blood counts were always in normal range. I have been doing well since end of treatment, enjoying a normal life with quarterly or all six months checking in hospital After one year past treatment
seoul
in
CLL Support
7 years ago
Dealing with malaria and mosquito's on holiday
Hi Everyone. My husband has CLL and finished FCR treatment 21/2 years ago. So far all is good - bloods normal WBC in normal range and stable. We are now considering a holiday in India (Goa) and I have maybe unwisely chosen a hotel with no aircon so I am worried about the risk of mosquito borne disease
Hi Everyone. My husband has CLL and finished FCR treatment 21/2 years ago. So far all is good - bloods normal WBC in normal range and stable. We are now considering a holiday in India (Goa) and I have maybe unwisely chosen a hotel with no aircon so I am worried about the risk of mosquito borne disease
Hidden
in
CLL Support
7 years ago
Update for followers
I note I have 11 followers and I'm surprised I have not provided an update for quite a while. I started Obinutuzumab and venetoclax in march 2016 with 75 percent CLL in my bone marrow aged 47. I had some early challenges but by August I had only 0.08 percent! Mrd positive. Next bone marrow biopsy
I note I have 11 followers and I'm surprised I have not provided an update for quite a while. I started Obinutuzumab and venetoclax in march 2016 with 75 percent CLL in my bone marrow aged 47. I had some early challenges but by August I had only 0.08 percent! Mrd positive. Next bone marrow biopsy
Corin850
in
CLL Support
7 years ago
CLL Patient, unmutated CD 38-, FCR 10/13 - 4/14, MRD-, best blood results since then even t-Cells climbing to normal, IgG 650, IgA, IgM norm
After now three years ending FCR I am still pleased to feel great, no health problems at all. Blood counts in best shape. three times a week gym for 1 1/2 hour, and two/three times fast walking for one hour. having lots of raw vegetabiles and fruits, drinking green tea from leafs and little mango juice
After now three years ending FCR I am still pleased to feel great, no health problems at all. Blood counts in best shape. three times a week gym for 1 1/2 hour, and two/three times fast walking for one hour. having lots of raw vegetabiles and fruits, drinking green tea from leafs and little mango juice
seoul
in
CLL Support
8 years ago
Bendamustine vs FCR
My consultant is discussing treatment options with me. Been in W and W for almost 6 years but now my ALC is over145 and my haemaglobin is drifting down below 120. He is suggesting that Bendamustine with Rituximab will be a better option for me than FCR because of some particular presentation of my condition
My consultant is discussing treatment options with me. Been in W and W for almost 6 years but now my ALC is over145 and my haemaglobin is drifting down below 120. He is suggesting that Bendamustine with Rituximab will be a better option for me than FCR because of some particular presentation of my condition
Clovelly
in
CLL Support
8 years ago
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