11q CLL FCR hope: ncbi.nlm.nih.gov/pmc/articl... - CLL Support
11q CLL FCR hope
Fascinating. I wish I'd paid more attention a) to chemistry at school and b) when diagnosed! If I were a scientist that would make a very interesting read. I did, however, struggle through to the end. Wrestling with the terminology and long, unfamiliar words until I could read . . .
"It is noteworthy that evolution of treatment may overcome the significance of some of these prognostic factors; thus, while maintaining its predictive value on OS in patients not eligible to modern chemoimmunotherapy regimens, 11q- lost its unfavourable significance in those patients treated by FCR.34,55 Importantly, mechanism-based treatment in the refractory/relapsed setting showed high efficacy in “high risk” patients;75 thus the introduction of new oral agents targeting kinase signalling or BCL2 will likely change the significance and role of many of these markers."
I'm so glad I've attended the CLLSA seminars and joined in with this forum. I have 11q deletion, have survived a full sequence of FCR and am now in remission for over a year. Next clinic early January, so here's hoping for many more months/years of disease-free survival.
May we all be blessed by the wonders of science and care. Peace and happy Christmas.
Roger
Hello I'm 44 and have 11q and live in the UK. I've been diagnosed for 1 year and a few months. My last visit the doc said I soon have to start treatment. They have recommended a clinic trial or FCR can you give me an idea about the type of treatment i should ask for and questions. Anything i need to know. Thanks.
The FLAIR study in the UK offers Ibrutinib+rituximab or FCR. I can't quote references but evidence seems to be accumulating that having 11q is not necessarily a poor prognostic indicator if treated with ibrutinib.
I'm hoping that's true because I'm in that situation.
Hello Hatter1972. I'm a "hatter" by circumstance i.e. moving to live in Luton!
No idea about clinical trials - although fairly early on in my process I was told I had some other deletions which had a poor outcome prognosis and wouldn't respond to FCR. I was referred to the UCH in London who determined that this was incorrect and my 11q deletion would respond and I should continue ; as the first treatment had had a good effect on my lymphs etc. Had this not been the case I was primed to consider clinical trial or bone marrow transplant. Neither were reconsidered.
Since completing treatment I've been in remission for 12 months or so and eventually after about 9 months the chronic fatigue began to ease. I'm generally well - my blood levels are more or less in the right place and I get checked every 3 months locally.
The on-going problem that I'm dealing with on a daily basis is chronic leg pain due to almost a year of low physical activity followed by knee injury when I started to get fit again. I've been diagnosed with quite serious muscle wastage in both thighs and torn ligaments in both knees. I've been referred to orthopedics and physio. Probably my fault trying to get fit too quickly - I'm an old git now of 65. I should have known better!
Best wishes to you,
Roger
Hi I am also 11q deletion and was diagnosed in June 2016. How long was it for you from diagnosis to treatment?
Thanks
ABloor
Hello ABloor.
I was diagnosed on 2nd Jan 2015, this was confirmed on 5th Jan 2015 and I started treatment on 6th Jan 2015. Treatment continued until mid-October 2015 with 6 FCs and only 5 Rs. Reasons for lengthy time of treatment were - low platelets or low neuts or sometimes low red blood and/or shingles or some or other minor infections etc.
Diagnosis was a fluke - bad blood results prior to a prostate intervention. I had, however being experiencing some of the other symptoms, fatigue, frequent infections and a couple of major night sweats. I put it all down to my male plumbing problems. I was also getting tinnitus, dizziness and nausea for a number of years which hadn't yet been properly investigated. I put it down to my age and stress. My GP suggested Menieres disease which seems to have vague clinical parameters.
What's your situation? I wish you well and am happy to offer any further information - you might benefit from my mistakes,
All the best, don't let it define you or get in the way of living a fulfilling life. Don't worry - be happy! Roger
Statistically, on average 11q patients have about 3 years between diagnosis and treatment but that will depend on how 'early' you are diagnosed.
Thank you. Although I was diagnosed in June 16 looking back at my bloods it started ablout 18 months prior but wasn't picked up so prob started about Dec 2014. So probably got another year then treatment. 😩
You never know, could be longer! Important not to treat the blood results but other features - nodes, bone marrow failure, fatigue, night sweats etc. Unfortunately, 11q- tends to have bulky nodes, particularly in the abdomen, which cause other symptoms. Important to have a CT scan at some point.
As some of the other replies show, 11q- is just one of the possible prognostic factors that will determine your progress.
Use this time before you need treatment to get as fit and healthy as you can, it will make all the difference in coping with whatever treatment you have.
Good luck
I am I cycle to work which is soooo hard 3 times a week. I have quit sugar and reduced carbs to help with weight loss. Just need to cut down my red wine. I feel like I constantly have hay fever and aching glands in my neck but not swollen.
Thank you for your reply it means a lot.
ABloor
For those in the 11q club (I believe 10% of CLL) I have been on WW for about 5 years but need treatment soon. I am also unmutated..which I suppose most but not all 11qs are and also Im complex karyotype which adds another wrinkle. I think we are all so very different even with similar genetics. Best wishes to all for the New Year.
I am 11q but mutated. I was diagnosed in 2015, and went to MD Anderson in 2016 when more testing was done. Was told that 12% would need treatment in 2 years. If nothing changes with me, I might need treatment in 53 months. Still digesting all of this.
53 months? I've never seen an estimate like that, but it sounds like your doctor doesn't think you will need treatment in the immediate future and that you will have lots of time to digest things. Allow yourself to learn bit by bit, but don't obsess. live your life, too.
I checked my FISH results from 2012(June) at visit to consultant last week. I'd missed this in 2012 but turns out I was 11q del.
Remission having been treated in 2nd half 2012 lasted until this year, trend over last three visits (three months apart) shows that ending. So, depending on where you measure from and to means I got about 3.5 yrs out of FCR.
Rob
Rob,
What's the next step?
Jeff
🎅🏻
Hi Jeff,
My next step is enjoy a great Christmas with the family. (It's 06:47 Christmas day here).
On a serious note back to see consultant in Jan to discuss options further. Will update you after then.
rob
A wise approach. Have a wonderful Christmas!
And so, with Christmas over, and two visits to hospital, including 11 blood samples and a bmb in one visit, tomorrow(Friday) Ifind out the next step in my journey.
Sending lots of positive thoughts that your doctor will have a plan you are comfortable with.
Wishing you all the best for tomorrow's appointment, Rob. Let us know how it goes..
Paula
11q and 17p
13q, now 11q too!
V + O for R/R CLL post FCR
