Blood Stem Cell Transplant

[Jameelah]

Hi I m a 46 year old woman diagnosed with Cll in April 2014 with 17p deletion. I have been in watchful Waiting but now doctors have suggested I take Imbrivica and prepare to have a stem cell blood transplant because I am young and not showing symptoms. Has anyone had a stem cell blood transplant? What was your experience with the blood stem cell transplant?

[AussieNeil Administrator]

Dr Brian Koffman, who contributes regularly, had one which didn't take. You can read about his transplant experiences in his blog:

bkoffman.blogspot.com.au

While it is still the only recognised means of curing CLL, it's not commonly used.

Neil

[Hidden in reply to AussieNeil]

Thank you I will read it.

[MJN44]

Hi there

My husband (aged 47) also has CLL with 17p deletion. He has been on Ibrutinib since May and will have a transplant once his counts return to normal (they hope this will be early new Year). He has been told this is the best option for someone his age who also has the 17p deletion. At this stage we haven't been told what the success rate is. It seems very few CLL patients have gone down this path so maybe there's not much data on it. Are you in the UK?

[Hidden in reply to MJN44]

Thank you and I live in the United States

[Yarwis]

Hi, I had an SCT in 1999 when I was 41. I relapsed in 2003 and had a Donor Lymphocyte Infusion (DLI) which put me back into remission. I have since relapsed again but am stable at the moment, able to work full time, and live a normal life.

I was diagnosed in 1995, had 2 children after diagnosis and have been able to teach them and watch them grow in that time. They are both now at university and, despite some difficulties on the way, I am very grateful that I have had this time and will continue to treasure my health and my life.

Good luck with your decisions.

Best wishes,

Val

[Hidden in reply to Yarwis]

Thank you

[wkj119]

I am in a similar position with 17p. Diagnosed 5 years ago and but just started ibrutinib in Sept. My doctor is recommending a transplant for January. Recent treatment options, like ibrutinib, have led some to question whether transplant is the best option.

bloodjournal.org/content/ea...

My understanding is that 3 year survival rates for transplant are about 60% depending on various factors. There is a recent OSU study that seems to indicate a 80% survival probability when treating 17p patients with ibrutinib - Dr. Koffman has a reference to that study in his blog: bkoffman.blogspot.ca/2014_0....

There is a lot of uncertainty here and things are changing constantly.

Best wishes

Ken

[Hidden in reply to wkj119]

thank you

[sallylou]

I have heard about removing the white cells and alternating them and them replacing them into the body where they attack the cancer cells and destroy them. Has anybody heard about that?

[Cllcanada Top Poster CURE Hero]

It is called CARs or CART19, sallylou

Chimeric Antigen Receptor enhanced T-cells (CAR T-cells)

It is a treatment still in the experimental stages, that removes a patient's T cells, adds a bit of a virus to them, then they are transfered back to the patient and the T cells are, by way of the virus, programmed to kill B cells using a target called CD19, although there are other targets.

There are 3 major types currently in early clinical trials, Novartis/UPENN, Juno and Kite

Lots more info here

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

cllglobal.org/CLLnews/btk-l...

lymphomation.org/programing...

~chris