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Ibrutiniv or.....
Hello everybody . i have no 17p / 11q or 13 q deletions , but i am igVH unmutated , waiting for results on mutation of gen p53 in about two weeks. WBC are in 130.000 ( always growing and more than doubling in the last 6 months ) and some lymnph nodes are close to bladder and maybe an urethra . All
Hello everybody . i have no 17p / 11q or 13 q deletions , but i am igVH unmutated , waiting for results on mutation of gen p53 in about two weeks. WBC are in 130.000 ( always growing and more than doubling in the last 6 months ) and some lymnph nodes are close to bladder and maybe an urethra . All
antonb
in
CLL Support
6 years ago
Update on Round 2 FCR
Hi everyone! As promised I would let you know how it's going. Round 2 was uneventful as well ! It was such a relief to not have any side effects. I noticed I was a little tired one extra day after chemo was done. First round I was tired and not so hungry for 2 days. This time it was 3 days. Don't
Hi everyone! As promised I would let you know how it's going. Round 2 was uneventful as well ! It was such a relief to not have any side effects. I noticed I was a little tired one extra day after chemo was done. First round I was tired and not so hungry for 2 days. This time it was 3 days. Don't
GMa27
in
CLL Support
6 years ago
Night sweats after FCR
Hi All, Completed first round of FCR 4 days ago pulled up reasonably well went back to work on Monday so happy so far. One thing I am soaked at night with night sweats each night since. Has anybody else had the same? Advice please!! š
Hi All, Completed first round of FCR 4 days ago pulled up reasonably well went back to work on Monday so happy so far. One thing I am soaked at night with night sweats each night since. Has anybody else had the same? Advice please!! š
Shirty78
in
CLL Support
6 years ago
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Ibrutinib and NHSE current position.
Dear all As you know I am fighting for the right to be prescribed the drug my consultant thinks is the best treatment for me which is Ibrutinib. However because my relapse is after the 3 year point (3.8 years) I am denied that treatment. As part of the invite for a review in July by NHSE I emailed my
Dear all As you know I am fighting for the right to be prescribed the drug my consultant thinks is the best treatment for me which is Ibrutinib. However because my relapse is after the 3 year point (3.8 years) I am denied that treatment. As part of the invite for a review in July by NHSE I emailed my
Mick491
in
CLL Support
6 years ago
FCR Treatment, 4 cycles or 6, follow up
About a month ago, I posted that I was considering stopping FCR treatment after 4 cycles pending a Bone Marrow Biopsy and PET scan. The results are in and the BMB showed "NO residual CLL detected" and the Normocellular at 40% cellular, Normal for my age. The March BMB, when I was diagnosed, showed
About a month ago, I posted that I was considering stopping FCR treatment after 4 cycles pending a Bone Marrow Biopsy and PET scan. The results are in and the BMB showed "NO residual CLL detected" and the Normocellular at 40% cellular, Normal for my age. The March BMB, when I was diagnosed, showed
severdon
in
CLL Support
6 years ago
Third FCR dose
After the third dose of the treatment, I think my body got over the treatment more quickly. I felt very nauseous for 5 days, but then much better and more like myself. Has anyone else felt the same? Maybe my body is better at dealing with the chemo now? Still neutrophenic after the treatment though
After the third dose of the treatment, I think my body got over the treatment more quickly. I felt very nauseous for 5 days, but then much better and more like myself. Has anyone else felt the same? Maybe my body is better at dealing with the chemo now? Still neutrophenic after the treatment though
Mandy56
in
CLL Support
6 years ago
Any suggestions
I have just returned from hosp with the news that treatment should begin. I have two choices the conventional fcr treatment or the Flair trial which may still mean fcr if thatās what the computer recommends has anyone any thoughts or advice, Thank you
I have just returned from hosp with the news that treatment should begin. I have two choices the conventional fcr treatment or the Flair trial which may still mean fcr if thatās what the computer recommends has anyone any thoughts or advice, Thank you
dandelup
in
CLL Support
6 years ago
Cold medication
Hi guys my hubby currently having FCR for CLL he seems to be taking the cold does anyone know what cold medication he could take if any ???
Hi guys my hubby currently having FCR for CLL he seems to be taking the cold does anyone know what cold medication he could take if any ???
Sailormoon11
in
CLL Support
6 years ago
Lymphocyte count post FCR
Three years ago my husband had FCR which was very effective and he became MRD- (ie complete remission). Everything has been going very well and he is feeling much healthier than he had done for years before FCR (he had 2 years in W&W but had clearly had CLL for years before diagnosis). Straight after
Three years ago my husband had FCR which was very effective and he became MRD- (ie complete remission). Everything has been going very well and he is feeling much healthier than he had done for years before FCR (he had 2 years in W&W but had clearly had CLL for years before diagnosis). Straight after
Fowey2009
in
CLL Support
6 years ago
unmutated cll patient treatment with fcr
hi there. i would like pls to know if unmutated cll patients as i am have complete remision for several years after FCR treatment or they all relaps after 2 to 3 years .fish test necative to 17p deletion. [i]Image of overall survival comparison with FC and FCR for IGHV mutated and unmutated added by
hi there. i would like pls to know if unmutated cll patients as i am have complete remision for several years after FCR treatment or they all relaps after 2 to 3 years .fish test necative to 17p deletion. [i]Image of overall survival comparison with FC and FCR for IGHV mutated and unmutated added by
Neoklis
in
CLL Support
6 years ago
Start FCR next week advice please
Hi All! Im 40 was diagnosed with CLL 3 and half years ago.. Starting FCR next week, any words of advice would be much appreciated! I plan to work during treatment,really do hope its not wishful thinking and I can do it need the money. I know everyone is different, is there anyone out there that pulled
Hi All! Im 40 was diagnosed with CLL 3 and half years ago.. Starting FCR next week, any words of advice would be much appreciated! I plan to work during treatment,really do hope its not wishful thinking and I can do it need the money. I know everyone is different, is there anyone out there that pulled
Shirty78
in
CLL Support
6 years ago
A little news to share ....
Two years ago today I began FCR. It was a challenge at times and it was this group that dragged me through it ...sometimes kicking and screaming! Today I've been busy at work, booked a holiday and feel very grateful for the poison that , so far so good, did a decent job. My life was turned upside down
Two years ago today I began FCR. It was a challenge at times and it was this group that dragged me through it ...sometimes kicking and screaming! Today I've been busy at work, booked a holiday and feel very grateful for the poison that , so far so good, did a decent job. My life was turned upside down
Bethan49
in
CLL Support
6 years ago
F.C.R.
How long after each treatment do you feel reasonable?
How long after each treatment do you feel reasonable?
Bamboon62
in
CLL Support
6 years ago
FCR treatment - anyone else had burning sensation in bowels?
Hi my partner as just started FCR treatment on the 27/07/2018 he was ok till yesterday night he went to toilet several time and complain of a burning sensation in his bowel. Hi this caused by treatment [i] [/i] [i]Title changed for easier search access - Admin[/i]
Hi my partner as just started FCR treatment on the 27/07/2018 he was ok till yesterday night he went to toilet several time and complain of a burning sensation in his bowel. Hi this caused by treatment [i] [/i] [i]Title changed for easier search access - Admin[/i]
Angus1953
in
CLL Support
6 years ago
FCR-12 months on.
Hi All, Hope you are all doing well. Finished 6 cycles of FCR June 2017 and bloods are all great. Am 51 an feel severely fatigued. Is this normal? I have a full time job but struggling to cope Anyone out there experiencing this? Thanks in advance, Robbie
Hi All, Hope you are all doing well. Finished 6 cycles of FCR June 2017 and bloods are all great. Am 51 an feel severely fatigued. Is this normal? I have a full time job but struggling to cope Anyone out there experiencing this? Thanks in advance, Robbie
rsw147
in
CLL Support
6 years ago
Race for life - for all of you
Hi guys! I did the 5k race for life today in Scotland. For all of you. You are all in my heart. My hematologist told me last Thursday Iām getting treatment soon. And that I may only have 20 years if Iām lucky. And that I could die during my soon to come FCR! I choose not to let this drag me down
Hi guys! I did the 5k race for life today in Scotland. For all of you. You are all in my heart. My hematologist told me last Thursday Iām getting treatment soon. And that I may only have 20 years if Iām lucky. And that I could die during my soon to come FCR! I choose not to let this drag me down
Flabal
in
CLL Support
6 years ago
CLL: FLAIR Trial site list and update to design
In response to an email, I received the following reply from the organisers of FLAIR with permission to share this in the online patient forums. I will include the full text below which ends with a list of the hospitals where FLAIR is currently running. But first a few bullet points from me * We now
In response to an email, I received the following reply from the organisers of FLAIR with permission to share this in the online patient forums. I will include the full text below which ends with a list of the hospitals where FLAIR is currently running. But first a few bullet points from me * We now
AdrianUK
in
Leukaemia Support
6 years ago
Neutrophils level
Hi guys my husbands FCR treatment has be postponed the past three week due to him neutrophils levels being low any recommendations as docs saying will come up naturally :(
Hi guys my husbands FCR treatment has be postponed the past three week due to him neutrophils levels being low any recommendations as docs saying will come up naturally :(
Sailormoon11
in
CLL Support
6 years ago
Medical update
Hi all I know some of you have been following my story since being refused treatment with Ibrutinib as NHS England decided not to follow NICE guidelines. I'm currently being reviewed on a 3 weekly basis. I was put on sreriods antivirals and antibiotics to treat the symptoms not the cause. The steroids
Hi all I know some of you have been following my story since being refused treatment with Ibrutinib as NHS England decided not to follow NICE guidelines. I'm currently being reviewed on a 3 weekly basis. I was put on sreriods antivirals and antibiotics to treat the symptoms not the cause. The steroids
Mick491
in
CLL Support
6 years ago
Just Finished my First Round FCR!
It still feels like an out of body experience. I was on W&W 12 years with no pains/ illnesses, etc. I was fortunate to have my first treatment admitted to hospital for 4 days last week. It was comforting knowing that if anything happened, I was already with medical professionals. My port made the treatment
It still feels like an out of body experience. I was on W&W 12 years with no pains/ illnesses, etc. I was fortunate to have my first treatment admitted to hospital for 4 days last week. It was comforting knowing that if anything happened, I was already with medical professionals. My port made the treatment
GMa27
in
CLL Support
6 years ago
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