It's been a while since I posted on my personal medical news.
Today in Columbus, it was all good. CBC was happily and boringly normal. My Hgb still shows that I am no longer anemic. My ALC (lymphocytes) is 1.4 which is actually a bit high for me, but certainly a comforting level.
My ANC (neutrophils) was healthy. My platelets are a bit higher than normal again, but that is to be expected due my splenectomy. The spleen gleans the aging and decrepit platelets, so counts are higher when it's missing. I will take high platelets any day over the terrors of single digit counts when my ITP was raging. By the way, the accepted wisdom is that the high platelets associated with a splenectomy do not increase the risk of a blood clot, but ironically ITP which ravages the platelets does. You can both hemorrhage and thrombose with the same disease. Seems inflammation is the enemy. I refer you to the 19th century wisdom of Virchow's triad, a trusted nugget carried in the brain of all medical students.
More on this particular topic soon with some personal revelations, but that is for another post.
My blood chemistries show my liver and kidneys are happy and healthy. The advantages of a vegan lifestyle.
Dr. Byrd would not agree to skipping my next CT scan in three months. The very few late relapses on ibrutinib that he has seen after 24 months (my two year anniversary
of living with the TKI magic of ibrutinib aboard will be at 9:30 AM EST on May 7, 2014) are often subtle
and begin in the nodes. With my pesky abdominal nodes, that does seem prudent despite my
aversion to more diagnostic "radiation therapy". Getting the scan at the newer CT at OSU's Martha
Morehouse may cut the rads by as much 60%.
Most relapses occur between 12 and 24 months, so my period of higher risk is thankfully coming to an end.
Still my clonal instability and my small subclone of 17p deleted cells keeps me forever on alert.
What we really need is a trial for the many patients such as myself that are doing very well on ibrutinib, but are not in a complete remission (CR). How about adding in a PI3K inhibitor such as idelalisib or one of the newer ones following in its footsteps. Hit the cancer clone on two pathways at once. A pincer move. A classic chemotherapy technique, but instead on chemo, we box off the cancer with focused therapies. Next add a potent third generation monoclonal antibody (mAb) such as obinutuzumab once the rascally clonal B cells have been released from the nodes and marrow out into the open spaces of the blood stream where they are easy picking for the antibody. Finally, we add something to mess with Bcl-2, say ABT-199. All this done in a carefully orchestrated and timed dance to maximize efficacy and dodge tumor lysis (TLS) by adding the ABT-199 as the final coup de grâce to make sure the beast will never rise again, but also when the tumor load is low so the risk of TLS is mitigated.
You can't get to cure without first passing by CR and MRD (minimal residual disease) negative.
For me, this is not a theoretical discussion. This is my blood and marrow and proliferative centers in my node that are at stake.
The same applies to many others that are in similar circumstances with ibrutinib and other TKIs.
It may even make long term financial sense in that it may also be a way to limit the duration of therapy with this initial treatment intensification, but with a predicted end of treatment baked into the plan.
I don't want to wait until it's too late so I am hoping such a trial may come to pass, speedily, in my time.
These and similar concepts are beginning to percolate out there.
What do you think?
I am wondering about bouncing such a plan off the powers that could make it happen. Right now it is a small population that would qualify for such a trial, but our numbers are growing fast.
Please give me your feedback.
"You may say I'm a dreamer, but I am not the only one."
More news, personal and general soon.
I wish a meaningful Passover to all my Jewish friends. May we all leave our personal Pharaohs behind and cross dry shod into the promised land.
Labels: 17p deletion, ABT-199, Bcl-2, CBC, Chronic lymphocytic leukemia, CLL, clonal evolution, CT results, Dr. Byrd, Gazyva, good news, ibrutinib, Idelalisib, Imbruvica, ITP, lab results, lymph nodes, obinutuzumab, OSU