Short Update on Ibrutinib + Idelalisib + Venetoclax "N of 1" trial after lower dose.

[UniversallyPersonal]

A update on my very surprising results when combining Ibrutinib + Idelalisib + Venetoclax.

Initial Post with more detail:

healthunlocked.com/cllsuppo....

I just had a second Bone Marrow biopsy after about 8 weeks on this "triple combo" after the surprisingly positive result of the first BM we lowered the doses to 140mg Ibrutinib + 2x150mg Idelalisib + 100mg Venetoclax / day to mitigate toxicity. The result remains and now there is 0.27% CLL in the BM biopsy, still no trace of Richter's.

In the complete report from the initial BM biopsy/aspiration I have two results. One is labeled as "Peripheral blood" with 6.5% and the other is labelled BM biopsy with 0.34%. They did not mention any test of Pheripheral blood at this point so it might be mislabeled. I hope to have this clarified on next appointment. Around the same time as this first BM (3 weeks after starting triple combo) I had a separate flow cytometry from pheiripheral blood that shows 0% CLL.

So it was either 6.5% or 0.34% CLL with no trace of RT in BM after the first three weeks. The important factor for me is that the effect is remaining at a lower dose, as the normal bone marrow function was very suppressed at the original dose. BM Function is still suppressed with current dosage, but seems to still slooowly be improving. Will have a PET next week to confirm there is no new activity in Lymph Nodes.

I have had a few different opinions from doctors on what is the best direction going forward.

1. Straight for a new Bone Marrow Transplant.

2. Try DLI if there is no sign of GvHD (I have a slight rash on the arm). If DLI is not applicable or giving response go for second transplant.

3. Try to consolidate current response with DLI, then move to second transplant, seemingly also if disease responds to DLI.

DLI consists of infusing T Cells from the donor for the first transplant, doctors are checking if he is available / willing to donate. There seems to not be much data for efficacy of DLI with CLL/RT. To me it seems natural to try to utilise the first transplant to its full potential before moving to a new bone marrow transplant. Less invasive treatment would be nice, but a potential cure is far more important.

Always a decision to make

Gunnar

[LeoPa]

Just unbelievable what you have to go through. I hope you get cured then write a book about your ordeal. It would be a must read for all CLL patients and care takers.

[Jm954 Administrator]

If it's any help, I know that some patients get phenomenal responses from DLI because it can have a powerful anti tumour effect by inducing GVHD. The trick is to get just enough GVHD to eliminate the Richter's but not so much that it causes unwelcome side effects.Most donors are willing to donate lymphs and, if I were in your situation, it's definitely the first option I would try.

I hope it goes well for you

Jackie

[UniversallyPersonal in reply to Jm954]

Thank you very much for your input!Yes that is my thought. I have read several single cases with good results from DLI. I have insisted they look into this option first and hope to learn donor availability next week. Doctors often lean on numbers and statistics to choose the option most likely to work, but numbers don’t tell the whole story.

Thanks!

-G

[Smakwater]

Fascinating,

Thank You for sharing your participation and insight Gunnar.

JM