11/17 Scan results back: so-so news

We got the scan results back on Friday. There was no detection of disease in the marrow: so I went from barely traceable to not traceable. That’s good news. However, the tumors shrunk but didn’t go away. My right abdomen leukemic mass shrunk to a size of a walnut, the left abdomen showed no activity from the PET scan, so were not worried about that one. Interestingly, the facial tumor showed activity in the PET scan --which I had thought was outa the picture, incorrectly so-- thus we’re assuming this one is still active (although small)


We talked about options and decided that the most logical one was to run it back: do the same 28-day EPOCH and Inotuzamab course and see if it will knock the tumors down even more. It makes sense because I tolerated the treatment fairly well -- I didn’t even bottom out for neutrophils this time, and most importantly my liver didn’t flare up.  I still had fatigue and I lost most of my hair so it’s not like it’s nothin. The hair loss was surprising: both that it happened and how I felt about it. In the past, besides the radiation, I have suffered through little hair loss. This time my beard went first (usually unaffected from chemo, but nice to see the dimples are still there) and then Bree buzzed my head to about ½ inch length to avoid shedding long hair all over the house. And then in general my face took the look of a chemo patient, the one I remember from 2012: a little more green; weird, fuzzy  hair; no beard; and lighter eyebrows. Then some other slight changes that are hard to describe, but I’ve noticed. It just emphasized how long and arduous this whole road has been. That was 7 years ago, and now I’m back at it.

If the tumors die then I’m going to transplant next. If there is some activity still, then we’ll have a tough discussion whether a transplant can happen with some small tumors or whether we should try something else to eliminate the tumors first, radiation or Inotuzamab being the best options.

Were happy that things are still moving in the right direction because often patients with my number of relapses stop responding to traditional chemo.  So that’s promising, but boy do Briana and I both wish the tumors woulda never came and we’d be gearing up for a transplant now. But it’s annoying cause we both want a stem cell transplant to happen, but even after a transplant, we’re not home free. With only 25% cure rate, it’s like, well, that’s not great.  There is just so much uncertainty gnawing at us--it’s stressful for both of us, but even more so for Briana as it often is for the life-partner, who is trying to figure out the bigger questions: what is our future? What is this life we have? How long does Derek really have to live? We’re taking it a day/week/month at a time for now and trying our best to keep the spirits up.

I’m scheduled to start day 1 in the hospital on Wednesday this week, which is good cause Bree’s birthday is Tuesday, so we can celebrate together. Then Wednesday admission should mean my counts are low for the weekend after Thanksgiving, but should be fine for Wed-Fri. So I get to celebrate that with the Lovells in Biz Pt this year. We’re even moving day 8 Ino up to day 7 so I don’t have to go in on Wednesday.  So hopefully if all goes well, I won’t be going to the hospital on Thanksgiving (unlike ‘12 & ’17).


A few pics from some highlights this month: J and I went to the Sounders MLS cup game last Sunday and had an amazing time! Sounders won 3-1 and it was the largest crowd ever at Century Link field. First championship event I have ever attended and felt great to witness Seattle win a cup.
The other pic is Briana reading to a gaggle of little-ones at Isaac's one-year birthday party.