Venetoclax or bone marrow transplant?

[karenmarie]

My son has CLL with 11Q deletion. he could have a haplo transplant with his brother as a half full match donor but given his pneumonia has not subsided he is now looking more towards Venetoclax. The transplant has been postponed non stop because of fever from pneumonia. Feedback will be appreciated. Thank you

[Cllcanada Top Poster CURE Hero]

Hi Karen...

Availability of Ventoclax has just changed in Ontario, it was available on compassionate basis, but now it has been approved for limited use in Canada, the programme has been terminated, I have been informed.

So, to get the treatment now, your son would need private medical insurance through his employer... it is not funded by the provincial healthcare system at the moment...

This should be discussed with his doctor... as soon as possible.

~chris

[thompsonellen]

I am not a doctor and you should consult yours, but bone marrow transplants are very high risk, i.e. high mortality rate, double digits due to risk with graft v. host disease, risk of infection, etc. On top of that, there is a long hospital stay (months) and then you need to basically be under what I think of as house arrest for months to avoid infection. I have a 17p deletion and my strategy is to try to use meds to extend my runway as long as I can in the hopes medicine will advance to the next stage by the time I need another solution (I'm 48). I am on a cocktail that includes venetoclax, and it works really well, though you need to be very careful during the ramp up of the dose. I was told to get my brother tested if he is a match because a BMT could still be in my future, and despite the lovely post today by Ausrine which shows us that you can be cured, but I plan to exhaust other options first. As a mom myself, I'm sure you are worried sick. Hang in there!

[karenmarie in reply to thompsonellen]

Thank you for your feedback thompsonellen. Could you tell me more about "the cocktail that includes Venetoclax".

Karen

[thompsonellen in reply to karenmarie]

Sure. It's 8 rounds of obinutubumab, with obin being the only med the first month. Then, they add ibrutinib in cycle 2 and venetoclax in cycle 3. This goes for 14 cycles and if you are in remission, you are off meds. Gory details are here: cancer.osu.edu/cancer-speci...

[karenmarie in reply to thompsonellen]

Thank you. Keep well.

[Bmv01 in reply to thompsonellen]

Hi Thomsonellen, a couple of similarities there. I am also 48 and have been on Ibrutinib for last 18 months. I have been suggested BMT and as the BM still has 20% cll , I have been suggested Venetoclax to bring the disease down and then go for a transplant. Really numbed - can't think what is the right thing to do. Very confused. Who should I turn to ?

[Justasheet1 in reply to Bmv01]

Do you see a CLL expert? That's who you need to have that discussion with.

[Bmv01 in reply to Justasheet1]

Yes, I saw my consultant yesterday. Guess need a second opinion. My consultant is all for transplant.

[Cllcanada Top Poster CURE Hero in reply to Bmv01]

I would consult with Dr John Gribben ar Bart's he has extensive transplant experience and also is very familiar with Venetoclax...

More information here, watch my friend Deborah's story

bci.qmul.ac.uk/staff/item/j...

[Bmv01 in reply to Cllcanada]

Thanks. Will def get a second opinion. Why rock the boat when it's going fine.

[Bmv01 in reply to Cllcanada]

Thanks for the tip - have requested for an appt with Dr Gribben..Still waiting.

[Justasheet1 in reply to Bmv01]

Do they feel that you are failing Ibrutinib?

[Bmv01 in reply to Justasheet1]

No, don't think so as I have made v good progress in my ct as compared to the last one.

[thompsonellen in reply to Bmv01]

You absolutely need to talk to a specialist. My BM is at 20% and John Byrd isn't panicking at all about it. He said I should stop fixating on MRD-. He also said your numbers on ibrutinib can continue to make improvements for years, and that I can live just fine with cancer in my BM even with my 17p situation. He was to me a BMT is the very, very last resort with other clinical trials options if my treatment fails (I'm already on venetoclax and ibrutinib). It can be life saving and if I run out of options, I'll sign on myself, but there is a very real mortality rate, not to mention, something like 3 months in the hospital and then more time at home while your immune system recovers. So please go talk to someone very skillful who can give you some high quality info.

[Ausrine]

Hi , I'm 21 yo and had CLL I also have 11q deletion .

I had mini allo transplant 6 months ago, still cancer free (in remission )