Diagnosis: Acute Myeloid Leukemia (AML). A Journey

George was sitting in his recliner on Monday evening when he got a notification that his lab results from earlier in the day were available on the UPenn portal. He gets blood drawn every Monday by the nurse from Penn Home infusion that comes to the house.

The results showed that his white blood cell and platelet counts were low. He looked over at me and said “It’s starting.”

He knew there was something afoul in his bone marrow from the results of his last bone marrow biopsy and he thought, well…here we go. The cancer is back. I told him to just wait until the next day and let’s see what Dr. Loren has to say.

The next day, Tuesday February 14th….Valentine’s Day, we drove out to Philadelphia to meet with Dr. Loren. She discussed what was happening and what George’s next step would be.

Here’s what we learned:

• Although the results, as described in the pathology report, don’t sound or look like the results George had when he was diagnosed with AML, he is indeed out of remission. The cancer IS back.
• I told Dr. Loren that from my internet searches, the report seemed to be describing the characteristics of MDS (myelodysplastic syndrome) rather than AML. I remembered that after George’s very first BMB, the results stated that due to the shape of some of his cells, he most likely had previously undiagnosed MDS, which often morphs into AML.
• Dr. Loren said that is correct. MDS and AML exist on a spectrum. I didn’t understand the words “recurring disease” used to describe George’s bone marrow on his report. It didn’t sound like his disease. But because both diseases exist on this spectrum, MDS is indeed a return of his original disease, AML.

We then discussed the next possible steps. The first one is to get started treating the disease in George’s marrow. Thursday, Feb 16 the he will start a round of chemotherapy. For 7 days in a row, he will drive to UPenn and get an injection of Vidaza. He has had this chemo before and last time, he had to get two shots in his belly each time. Now, because he still has his PICC line, they can just administer the chemo that way. Much less painful! He will also start taking a chemo pill called Venetoclax, which he has also already taken. He will do two cycles of this regiment.

Then we have to decide if he should try another DLI (donor cell infusion) or go straight to a second transplant. There are good arguments to be made for each option.

Quite frankly, I have lost confidence in the current donor’s cells. We are so grateful to him, but George has been infused with his cells twice and they haven’t done the job. If he has a second transplant, he will get a new donor. Of course, after he had the DLI in December, he contracted COVID about three and a half weeks later and was hospitalized and given steroids. It is possible that the COVID and the steroids could have derailed the new donor cells. We will never know if that was the case.

Dr. Loren said that if George were to have a second transplant, which seems like an inevitability, the conditioning chemo regiment that precedes it will be less harsh than last time, This is because a body can’t tolerate that treatment more than once, although George said “Bring it on! I handled it pretty well last time!” He was told that while he did handle it well, the chemo affects the heart, lungs and organs, even if he is not aware of it. It is also because this cancer has shown us that chemo will not get rid of it. It will find a work around to any pathway blockage put in its way. That is frightening to me, He basically had his bone marrow Nepalmed twice and his entire body irradiated and this wasn’t enough to kill off this persistent, insidious fucking cancer. She said the ideal option now is an incredibly strong immune system, which would recognize the cancer cells as foreign and kill them. That immune system would need to come from a donor and I think it’s time to get a new one.

I am glad I go to George’s doctor appointments with him, because he doesn’t seem to want to hear or process what she is saying. Or maybe he just doesn’t understand. It was only this morning when I showed him the picture above that he accepted he was out of remission and began weeping and sobbing. It broke my heart.

So, Dr. Loren will meet with her colleagues tomorrow and discuss George’s case and get a consensus on the DLI vs second transplant issue. I’m leaning towards transplant myself. I want the fastest path to a possible cure that’s out there.

It’s been 225 days since George’s transplant. The optimistic hope and joy over that day are a fading memory now, I knew it was a possibility that we could end up in this situation, but we honestly thought George would be a success story. Everything was going so well. So, now…a new new normal. Again.