Christopher F
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Hoping to help people with the same experiences as myself

Christopher F
Posted by
24 Nov 2014

From diagnosis to the start of treatment

After repeated chest infections of various intensity over the last two years my GP refered me to the Haematology department at Nottingham City Hospital at the beginning of this year. After blood tests and a CT scan in March I was diagnosed with chronic lymphocytic leukaemia with a 'watch and wait' brief.

I was well enough in July to walk Hadrians Wall Way in 8 days and enjoy many long walks throughout the summer.

Unfortunately in September I started to tire easily, my lymph glands stood out like marbles and various other symptoms meant a further CT scan following which at the beginning of this month I was advised I would need treatment.

I have been offered two options. Firstly Chemo-therapy FCR (Fludarabine, Cyclophosphamide and Rituximab) or a trial called FLAIR which compares FCR or an American drug Ibrutinab also taken with Rituximab (IR). After a short period of soul searching and advice from friends and relatives I have applied to go on the trial. Last Friday 21st November I underwent a medical examination, an ECG, had copious quantities of blood removed and an attempt made to remove bone marrow from both hips which were only partially successful. I spent the rest of the weekend nursing a very tender backside.

I am now awaiting the results of all the tests and the decision of a computer to tell me which regime I will be receiving.

I hope to continue this diary so that others may have some sort of reference they can compare their own experiences to but remember we are all different.

Comments

25.11.2014

Hi Christopher,

Thank you so much for taking the time to share your experiences with us. I think what you're doing is fantastic and can only benefit to others who read it and as a fellow patient I for one will be interested to hear of your progress.

I remember the feeling of those bone marrow samples and know only too well how sore they can be. I also remember going tor all manner of tests including ECGs and pet scans and the nervous wait for them to decide ultimately upon what treatment to start on.

Good luck with the trial and do stay in touch - if there's anything we can do to help please don't hesitate to get in touch. It's what we're here for!

Anonymous
26.11.2014

Thanks for posting..
The good thing about the FLAIR trial is that BOTH choices or arms of the trial are excellent. FCR has a long proven track record with patients in remission going back many years. Also Ibrutinab has been in use now for some years. A person known to me is on Ibrutinab and he has seen his lymph glands go down and his blood counts slowly return to near normal. But what he constantly reports is that his quality of life has returned. No night sweats and no fatigue.
Interestingly Brian Koffman did some interviews with CLL doctors in the USA and they said that the next step for Ibrutinib is a trail with Rituximab.
So you are leading the field in CLL...!!
Both drug courses are excellent so we look forwards to some great news.
Please keep us informed, it will greatly encourage many people who are still on watch and wait.
Dick

26.11.2014

Thanks all for your good wishes and positive advice. As soon as there is any news I will post more blogs. Till then I will watch where I am sitting (I am still bruised) and take comfort in that others have been there before me.regards Chris Faulks