Remission over .... venetoclax (&R) here we come

[Fowey2009]

After 4 years of remission following FCR we heard yesterday that my husband’s remission is over.

We had been suspecting this for about 6 months - the blood counts were going in the wrong direction, a chest infection and a nasty bout of pneumonia being the clues.

His consultant has recommended venetoclax (2years) and rituximab (6 months) starting in September. We are so grateful to the researchers and our wonderful NHS that this is an option.

We have really enjoyed the last 4 years and made the most of his having better health than he had before his CLL diagnosis. We are hoping for similar with venetoclax.

Before then we have a lovely summer coming up - a week in Florence with our sons and their partners and a week in Cornwall.

Any advice about V and R very welcome.

Beryl

(Thank you to everyone who gave advice about masks for flying. As a result, a trip to Tallinn last week was uneventful - the last 2 flights had lead to chest infections and pneumonia. Obviously not evidence based but good enough for me!)

[gp7591]

Fowey2009- I'm saddened to hear of your husband's relapse and hope he is in good hands with a qualified, experienced CLL specialist. Venetoclax has shown exceptional performance in many clinical trials. The "Father of FCR"- Dr. Michael Keating at M D Anderson recently said (paraphrasing): "Venetoclax is the best CLL drug", so your husband has the chance to get very good results from it, if/when started. The results are truly exceptional- even for the most challenging patients (those with 17p deletions and other negative markers), Venetoclax has shown itself to be exceptionally effective, a fairly high percentage of patients becoming MRD negative (no detectable sign of disease) within the first 12 months, which to me is amazing. Rituximab may also help, but from the research I've read, combinations of Ventoclax with either (or both) Ibrutinib and Gazyva/Obinutuzumab) are showing themselves to be the most effective with CLL, Rituximab somewhat less. If you haven't done so already, I'd go back to your doctor with a list of specific questions regarding risk/benefit analysis of each drug (or combination), side effects, specifics of treatment regimen, etc. After a detailed discussion, you should feel more comfortable with your choice. Wishing you and your husband great success! -G

[Fowey2009 in reply to gp7591]

Thank you very much for a very helpful and reassuring response.

B

[GMa27]

What are his markers?

I had FCR 11 months ago.

🙏💕

[Fowey2009 in reply to GMa27]

Trisomy 12. Mutated/ unmutated not known. Apparently trisomy 12 responds well to FCR but we haven’t had the length of remission we hoped for

[J_88 in reply to Fowey2009]

Venetoclax works very well. Don't worry your husband will be just fine.