Remission - for Real? - Day +34 & +35

I know this page has been blank for days, I have been waiting for good news to share, and we actually had some yesterday, which seems so odd. Under normal circumstances, we’d be rejoicing, but it feels like fake news. He should be the one sharing this kind of news!

Day +34 - Thursday June 9

Today as I walked to his new corner room with a beautiful view of the Arizona mountains and desert, there was a sign on the door, no food or drink. That was odd because he hasn’t consumed anything but ice chips for days. Obviously, something interesting was going down today.

We knew going into this transplant that there wasn’t a cure and there wasn’t even a hope of remission. The goal was to get a little more time and clean out the over-crowded marrow with a reset to hopefully have new drugs FDA-approved before the MM got too active again.

You see, his first SCT only gave a “very good partial” response. Before the first transplant his light chains were 65 and after 2 months he was down to 8. By his 100-day mark, he was 5.98. The goal was to get in the 2s. Boy were we naive. We thought 65 was horrible and he was near death. His MM doctor at the time was pleased with the drop and decided to hold off on maintenance chemo until it started to rise. Why use up a good drug if your body could hold you at a low number. John was 22 months without any chemo and we felt blessed but that wasn’t long enough to consider the transplant a success. At the time they said he would likely never do another one unless it was last-resort because he didn’t have enough of a response. If you want to see how different that 100 days were, here it is in his words. 

This time he is only 34 days post-transplant and his light chains have gone from 1,478 to 2.9. Yes, you read that right, 1,478 to 2.9. This is amazing to hear Dr. Ken Doll (this isn’t even my nickname for him, I’ll say more on that later) say “You are in Remission.” and in the next breath, you need to have a biopsy of your colon to understand why the inflammation in the gut is spreading, a C/T scan and Echo to learn more about the fluid that is building around his heart and lungs, more labs to figure out why the anti-viral medications for the CMV don’t seem to be making a difference. And finally, I don’t even think John comprehended the most important words “You are in Remission!”

The prep for the sig scope began immediately, thus the no food or drink. His biggest obstacle was low blood counts. 4 units of platelets and 2 of whole blood. They finally had him built up enough to go through with the procedure. When he awoke, I was able to be in the post-op cube with him thanks to a friend and Nurse Angel. He seemed as good as he has all week.

Day +35 - June 10

The day started as good as any this week. He seemed a little stronger, he was making eye contact and speaking a little. Dr. Ken Doll and his sidekick John were in before dialysis and stressed the need for patience after everything yesterday. Everything with the heart and lungs was good. The fluid they feel is just a build up from all of the blood products and extra IVs he is getting and that should be remedied with dialysis today. 

They feel the biopsy will take us in one of 2 directions.  This mounting inflammation in the colon is either from the CMV as originally felt but the current anti-viral isn’t working or it is from Graft vs Host which isn’t common with an auto-SCT and something they had mentioned back when he went into ICU where his body is struggling to accept the 13-year-old stem cells. This normally occurs from stem cells of a donor which the body struggles to accept. If it is GVHD the treatment is very different from the anti-virals of the CMV. The high dose of steroids can inflame the CMV. Treatments for either cause declines in blood cell counts requiring continued transfusions. The results are supposed to be back in 48 hrs but Dr. Ken Doll had Sidekick John request a stat order. Hopefully, something by this evening to begin a new treatment right away.

He was probably the most alert he had been all week after the doctors left the room but by the time the dialysis nurse arrive to take him away, the fever had started to climb.

Dr. Ken Doll

OK, before I proceed, I’ll tell you about Dr. Ken Doll. A couple of years ago, I was doing work with seniors who were in need of additional care and resources. Helping them find next living arrangements that met their needs and budgets. I met a very sweet woman in her late 80s who was a dynamo and part of a group of snowbird women from Mesa who loved to play Mah Jong, exercise and eat out. We had coffee a couple of times and she was telling me about her journey with Multiple Myeloma. She said she was diagnosed at the Mayo in Rochester but hadn’t been serious enough to need treatment yet. She saw a doctor that was like a real-life “Ken Doll”. Tall, dark, handsome and young. She told how she enjoyed going to her quarterly appointments and if John’s doctor ever retired or left, we should look up Dr. Ken Doll I knew the moment he walked into John’s room, this was Dr. Ken Doll :-)

A Totally Different Man Returns

Back to John. Four hours after he was swept away, the transport guy wheeled him back in. He often comes back from dialysis very tired, but this patient returning wasn’t aware of anything. All afternoon and evening he was just gone. 

The nurses knew things weren’t right and called Sidekick John in. John sat with us for a very long time trying to get a response out of my John, checking him out and just being present. He called to the lab and said it is urgent to get the results because a change in treatment has to start soon. He said John is fighting for his life. His heart is strong, his cancer is in remission, but the rest of him is out of control with West Nile Virus, CMV and quite possibly GVHD.

Pray for a turn around very soon! He needs to know that he is in remission!

Julia