Great news today!

Marian is in complete remission (normal blood and lymph nodes). And the only reason John's remission is not yet considered complete is the presence of one abdominal node that is just 1/2 a centimeter larger than normal. Every other lymph node has shrunk back to normal size and his bloodwork continues to be perfect.

John's lymph nodes prior to CAL-101 were extremely bulky all throughout his body. We were told at the beginning of treatment that sometimes when the nodes get as large as his were, they never return to normal size even when cleared of disease. And a patient is only considered in complete remission if all lymph nodes return to normal (1.5 cm) size. So, if even one lymph node failed to reduce to pre-CLL size, he would not be considered in complete remission. Instead, he would be considered in partial remission. But the point was ... don't get hung up on a technicality or category. A partial remission, in this case, can be every bit as good as a complete remission. Especially since this treatment is an ongoing, maintenance type of treatment. Based on that up front explanation and the size of John's lymph nodes, I didn't have an expectation that he would ever meet that criteria. So, I was really surprised today when the results of his most recent scans revealed only one lymph node that wasn't completely normal. And I was shocked that the last lymph node was only .5 cm larger than normal. I don't remember precise measurements off the top of my head, but some of John's nodes were at or near 10 cm at the start of treatment!

I asked today if there would be a point when John and Marian would be considered "in remission" even though CAL-101 is a continuing therapy. The answer that Marian was considered in complete remission and John was only missing that designation by 1/2 a centimeter was unexpected and extremely happy news!

This past year, both John and Marian were allowed to back off ct scans from every four months to every six months. At this point, Dr. Flinn said we can wait a whole year before having the next set of scans! More happy news! (I always worry about the amount of radiation they are being exposed to. But you have to comply with protocol when in a clinical trial.)

Because there are no other patients taking 50 mg. other than John, they are doing away with the 50 mg. capsule. But John will continue at that dose, since it's clearly working for him. He will just go to a once per day dose of 100 mg.

Nothing was said about a repeat bone marrow biopsy. And I didn't ask about it. John's marrow infiltration was only 20% at the start of CAL-101. Marian's was 90%, but it had been reduced to 30% after the first six months of CAL-101. It may be that they would also have to have a BMB to confirm complete remission. But since treatment will not stop either way, I hope that won't be required.


Bonnie said…
Shari! God's blessings to you, John and his Mom! This is wonderful news! (No, I'm not overdoing the exclamation marks at all!!!!!) I guess they consider remission, remission, whether it's with on-going treatment or not. So, so happy for you all. I need to email you and update you on my cal-101 progress.

Bet you guys walked out of the doctor's office with some big smiles. I hope you celebrated! Having those lymph nodes normal size just *feels* better physically, let alone the positive response that's evident on a PET scan. Some of us hardly *need* the PET scan to confirm the drug is working! lol.
Shari said…
Thanks, Bonnie! I look forward to hearing your details!

I have a feeling Dr. Flinn would say a complete remission needs to be confirmed with a bone marrow biopsy. His research nurse was the one I asked about the remission because she was the one who mentioned the specifics of John's scan results, which prompted me to ask the question. But since treatment will be ongoing, I don't see any need to subject them to the BMB. It's not like a clear bone marrow result will change anything we're doing. It would be nice to know that their marrow is clear. And at some point the trial will probably request it. But I'm sure not going to bring it up! LOL. Those are not fun tests.
Mary DooWah said…
Great news for all of you! And I hope that remissions, whether partial or full, means that they are both feeling great and able to do what they love.
Shari said…
Mary, they are both doing so well! Marian is dancing at least once a week. And actually (this is funny), her son (early fifties) was at her condo for a visit, waiting for her to come home and fell asleep. He told her he was sorry but she came home later than he could stay up! LOL. John is not out dancing. But he has been on the golf course more than I've seen him in years. He is enjoying his new Honda dealership. And we are both loving our new life in WV. We got a golf cart (since there are three courses in our new neighborhood) and I go out with him and just ride while he plays with our new friends. If anyone had ever told me our life could be any better than it was in Murfreesboro, I would have laughed and said "Impossible!" But I would have been wrong. I am so very thankful for this time in our life and all that God has done for us!
justme said…
Soooo happy for you guys!!!!!!!!! (following Bonnie's lead with the exclamation marks :)

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