I was diagnosed with CLL at the age of 27 in 2012 and have just commenced FCR April 2014. I was wondering if there are any CLL patients close to my age of 29 to share experiences as I am repeatedly told that I am very young to be diagnosed with CLL at this age as it is more commonly found in people in their 60's.
Any CLL patients close to my age of 29? - CLL Support
Being under 30 is not unknown for CLL, but is also certainly unusual.
To me this raises some thoughts that could benefit both yourself, AND the CLL community.
Since your age is unusual this means that you would naturally be of interest to those doctors who truly specialise in CLL. It being a natural human condition that the slightly different patients are perhaps more interesting technically.
Thus I would recommend that you approach a known CLL research centre.
This does two things:-
It makes sure that you receive the very best and most up to date medical assistance, plus access to the latest drugs.
The research generated by your medical history would help the many others with CLL.
Not sure where you write from, but if within the UK I might suggest:-
Dr Claire Dearden at the Royal Marsden in London.
Dr Helen McCarthy or Professor David Oscier at The Royal Bournemouth Hospital.
The CLL research team at Cardiff University Hospital.
I am sure there are some others but these are places where I have known there to be true experts in the field of CLL.
Let us know how you get on, as ALL information about CLL is of interest to the many reading these pages.
Dr Francesco Forconi is a leading physician with a special interest in CLL. I have been fortunate to meet him recently on a few occasions, I traveled to Southampton too and was very impressed with their facilities and research. Dr Forconi has agreed to assist CLLSA and has joined our group of medical advisesr and will be Aiding CLLSA with updating educational information. you are in very good hands.
Dr Francesco Forconi at Southampton university Hospital
Wow I was diagnosed at 40 and I thought I was young. There is a very good charity Shine Cancer Support aimed at young adults in their 20's, 30's and 40's with a cancer diagnosis shinecancersupport.co.uk which is a UK organisation though, not sure where you are. Happy to help in any way I can though.
There is a lovely girl from Singapore who posts as Fayth on the CLL Forum. She was diagnosed in 2006 when she was 25. She recently has had a transplant. cllforum.com/forum60/8413.html
You are young. From my point of view that is good and bad. Bad because you will have a long time to live with this disease. Good because the younger you are the greater chance for you to do well with a bone marrow transplant and new drugs are in the testing stages that look to be very promising. Know as much about your disease as possible. Print out every article that you read that has negative and positive information. Make copies with your questions on both copies. Give to your doctor and ask questions and get answers. Make sure you know if you have deletions such as 17p, 13q and are you zap 70 positive or negative. I have seen a lot of post on this web site that considers FCR as the "gold standard". Here in the US most oncologist are getting away from using this combination because it is so hard for the immune system to bounce back. Also some of the new drugs in testing that look good for people with 17p such as myself cannot use these drugs if they have had FCR treatments. Long and short knowledge is power and you need to take a very active role in your treatment.
Just by coincidence I met a patient at OSU (Ohio State University Medical Center) on Monday. This is a CLL Consortium facility where we are both being seen by CLL specialists. He was Diagnosed at 34. I contacted him this morning and can get you his email if you send me a private email at waynww@gmail .com