Feeling Good

[Audrey10]

I was disagnosed with CLL six years ago. Was in remission for 3 years and then had to have 2 3day chemo sessions to get my WBS count back inline. Now 3 years later my lymph nodes are enlarged in stomach, groin and under arms but my WBS count is still in check. Was put on Imbruvica 11 days ago. Have had no side effects besides very positive results with lymph nodes reducing in size. I am 69 white male who continues to play golf and enjoys a glass of wine. Is it possible to think that in time I would be able to stop taking Imbruvica?

[annmcgowan]

Hi glad you are feeling so good and no side effects on Ibrutinib. I am on Flair trial Ibrutinib and rituximab and doing well apart from a small amount of pitiqiae. It is amazing how quickly the lymph nodes disappiar. Well done and long may it last.

Regards

Ann

[Audrey10 in reply to annmcgowan]

Best to you

[Jm954 Administrator]

Hi Audrey10,

There is a clinical trial in the UK called FLAIR trying to answer that very question. Patients on Ibrutinib are monitored every 6 months for their MRD status in blood. 2 MRD negative results leads to a BMT and if that is negative then their Ibrutinib will be stopped.

Ibrutinib is expensive and with plenty of side effects for some people. If it could be safely stopped that would be a benefit, as long as it was effective if restarted because of relapse.

In Chronic Myeloid Leukaemia the treatment with Tyrosine Kinase inhibitors has been stopped in a clinical trial and many remained in ongoing remission.

This article discusses the practice ncbi.nlm.nih.gov/pmc/articl...

Measuring MRD negativity in CLL is less sensitive than the cytogenetic testing done for CML.

[Audrey10 in reply to Jm954]

Thanks for all the info

[lankisterguy Volunteer]

As jm954 says, the CLL researchers are trying to figure that out.

Dr. Furman believes that some patients can reach MRD neg on Ibrutinib and may be able to pause treatment, but for most that can take 5 years. But many patients don't get to 5 years due to side effects or developing resistance.

He also believes that the best route to MRD neg and being able to pause or stop treatment is with a combination or Ibrutinib and Venetoclax, many patients can get to MRD in one year. But getting US health insurance or UK NHS etc. to cover the cost of that combination is very challenging. There are several clinical trials testing that theory. Time and data will tell whether the hypothesis is valid.

Len

[Audrey10 in reply to lankisterguy]

Thanks

[W00dfin]

I had 6 years remission following 1 3 day FCR. After 11 months of Ibrutinib my counts are are normal except for platelets which are gradually increasing now up to 118. At 67 I am physically active and also enjoy a glass of wine. Best wishes to us both!

[Audrey10 in reply to W00dfin]

Cheers!