Dr Pidala pleased with blood trends: 7 measures High, 5 Low, with 31 in range.  Glass half full!

My transition to AB+ from O+ ‘getting there’, my old antibody ‘guerrilla fighters’ continue to dwindle.

Almost ready to start tapering Tacrolimus, but Dr. decided to let 2 liver function metrics get down into normal range first. Tapering Tacrolimus will be step drops from 10 pills/day to none, might beat Sept 1 yr target.  That will signify significantly less risk of graft vs host disease (GVHD), which can show up in liver, skin, GI.

The Dacogen chemo cycle suppresses my immune system against relapse. Some cool news, Dr Pidala answered if I would relapse, it may well not be the original TP53 gene again(!).  TP53 has the worst outcomes out of the multiple gene types that can mutate. So my new blood marrow has no pre-disposition to TP53 vs. other genes.  Interesting!

Some less cool news, Moffitt was excited to trial a maintenance chemo (new vs 2006 vintage Dacogen I am on), targeting MDS including TP53 variant, but the small drug company ran out of money.  Hopeful a bigger company picks up trial, but market likely too small for them. Too busy chasing weight loss drugs I guess!  Dacogen is more of a best effort general purpose immune suppressor, balancing lowering infection protection vs relapse risk. 

My stamina and fatigue remain annoyance, along with GI daily struggles.  My hemoglobin is up to 11+, on its way to 14 normal. But like white neutrophils, will continue to significantly dip mid cycle from chemos. 

But pix show side effects is all worth it to see family and friends!!  17 mo Baby Hunter weekend was ‘heaven’ in Joyce’s words! J brother family spring break was fun, they had VRBO across bridge near beach. Alaska good buddy Kris stopping in Sat on way from Seattle to FL golf trip, looking forward to decades overdue catch up. Also J friend Krissy from MN next week.  Last pix is copy of David statue at Ringling Art museum in Sarasota, half day road trip which is 1st of hopefully multiple this year.  J pushed me around huge museum, all good.  I hit a bucket of balls at club, good for 15 min at a time with 10 min breaks. Next step is 9 holes by cart, but no rush.  Recliner and patio chair remain my go-tos, with meals out and short walks as diversions. 

Thanks yet again for checking in with me, my new normal is OK by me, don’t worry!

PS: Don’t put off visiting!  Only restriction is sniffles/cough.  I was totally off base linking low white count to visitors, but white is only good for infection from food, or cuts, or other bacteria. 

Only protection from people viruses is masking and avoiding anyone sick, not white count. If healthy, all good!