The hours ticked by today and I finally figured that since it was Good Friday that I was probably not going to hear from my team. But around 6:30 pm, Dr. H called with the results of my bone marrow biopsy, cytogenetics, and flow cytometry reports.
In a nutshell, my CLL percentage is up from 20-30% to 50% in five months. The P53 deletion is still a thing. And my donor cell percentage continues to inch downwards little by little. You know how when you think of the Lord, the phrase is “less of me and more of Him.” Well, that was the goal with my donor! But it’s going the other way. :/
Dr. H is meeting with all the various doctors who head up the various CAR trials and is trying to figure out which one I will qualify for and will be the best fit. I mentioned before that there is a big question regarding the NK trial, but the Phase 2 T-cell trial might work. She told me tonight that there is even a trial through Baylor that she is looking into. So I have absolutely no idea. Please pray for my team as they assess these various options for me.
Until the end of April when I go back to see Dr. H (then early May when I see Dr. W, my leukemia doctor), I will just be patiently waiting. They have given me some suggestions to try to help with the fatigue, which has gotten progressively worse, so I will work on that for the time being. And I will enjoy the sunshine, the flowers, the warm weather, sitting on the porch with my sweetheart, going to Oletha, family, friends, good food, conversation, and all the other good gifts that our Good Lord has given.
And then we’ll take the next step. Thank you for walking and praying with us along this journey.
Because of Him, it is still a Good Friday.
“Praise be to the God and Father of our Lord Jesus Christ!
In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead.”
1 Peter 1:3
March 30, 2018
March 23, 2018
Another Bump in the Road
I’m tired, my hip’s sore, and I really don’t want to talk about this right now…but I know there were many who prayed for me today and I want to share at least what I know at the moment. I won’t have the important results back for one to two weeks. My regular labs are hovering around the same as they have been. Lymphocytes up, neutrophils down. Platelets hanging in there.
The news that threw me for a loop today was that the trial (CAR NK) that I had already been approved for (by MDA and by my insurance company) may no longer be available to me due to my previous participation in the CAR T-Cell trial. Dr. H said that the lead NK trial doctor has gone back and forth regarding my eligibility because the product used to develop the chimeric antigen receptor (CAR) in the Phase 1 T-Cell trial is the same as that of the CAR NK trial. They have seen situations where patients have had second CAR trials, and the subsequent trial did not work because the patients had developed antibodies to the antigen so it didn’t “take” the second time. They are concerned/convinced that the same thing would happen in this situation. So it would be pointless to subject my body to two strong pre-treat chemotherapy drugs when my body will most likely reject the antigen (CAR).
It took us quite a while to wrap our heads around this trial in the first place and get to the point that we were ready to move forward…and we were finally comfortable with our decision, should the bone marrow biopsy comes back as expected. And then WHAM! Time to rethink again! Dr. H is going to re-present my case AGAIN to the team to make certain of their concerns. She also reminded me that the Phase 2 CAR T-Cell trial is still on the table. It uses a different type of product (not mice) in the preparation of the CAR so I would not have the same risk of rejection. I had thought that Phase 2 was only for lymphoma and ALL patients, but that was for standard care. It is still available as a clinical trial for CLL. So there’s still a possible option for me to achieve remission. Sigh.
All of this to say it’s been quite a day. I am thankful for my friend, Deidra, who drove me, talked with me, and kept me sane! I am ever thankful for my medical team who answers my endless questions, even after I get home. I am thankful for my husband and family who loves and upholds me and helps me remember stuff! And I am thankful for my God who calms the waves when the storm rages and carries me when I just can’t take another step until I am filled with His strength to once again journey on.
“God is our shelter and strength, always ready to help in times of trouble.”
Psalm 46:1
“The righteous call to the Lord, and he listens; he rescues them from all their troubles.”
Psalm 34:17
“Whoever goes to the Lord for safety, whoever remains under the protection of the Almighty, can say to him, “You are my defender and protector.
You are my God; in you I trust.”
Psalm 91:1-2
The news that threw me for a loop today was that the trial (CAR NK) that I had already been approved for (by MDA and by my insurance company) may no longer be available to me due to my previous participation in the CAR T-Cell trial. Dr. H said that the lead NK trial doctor has gone back and forth regarding my eligibility because the product used to develop the chimeric antigen receptor (CAR) in the Phase 1 T-Cell trial is the same as that of the CAR NK trial. They have seen situations where patients have had second CAR trials, and the subsequent trial did not work because the patients had developed antibodies to the antigen so it didn’t “take” the second time. They are concerned/convinced that the same thing would happen in this situation. So it would be pointless to subject my body to two strong pre-treat chemotherapy drugs when my body will most likely reject the antigen (CAR).
It took us quite a while to wrap our heads around this trial in the first place and get to the point that we were ready to move forward…and we were finally comfortable with our decision, should the bone marrow biopsy comes back as expected. And then WHAM! Time to rethink again! Dr. H is going to re-present my case AGAIN to the team to make certain of their concerns. She also reminded me that the Phase 2 CAR T-Cell trial is still on the table. It uses a different type of product (not mice) in the preparation of the CAR so I would not have the same risk of rejection. I had thought that Phase 2 was only for lymphoma and ALL patients, but that was for standard care. It is still available as a clinical trial for CLL. So there’s still a possible option for me to achieve remission. Sigh.
All of this to say it’s been quite a day. I am thankful for my friend, Deidra, who drove me, talked with me, and kept me sane! I am ever thankful for my medical team who answers my endless questions, even after I get home. I am thankful for my husband and family who loves and upholds me and helps me remember stuff! And I am thankful for my God who calms the waves when the storm rages and carries me when I just can’t take another step until I am filled with His strength to once again journey on.
“God is our shelter and strength, always ready to help in times of trouble.”
Psalm 46:1
“The righteous call to the Lord, and he listens; he rescues them from all their troubles.”
Psalm 34:17
“Whoever goes to the Lord for safety, whoever remains under the protection of the Almighty, can say to him, “You are my defender and protector.
You are my God; in you I trust.”
Psalm 91:1-2
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