I also participate in the Promise trial at Dana Farber 🙂 Looks like we are getting closer to finding a way to slow or halt progression with their work and again with the huge sampling in Icelandic and new info coming in from that at lightning speed. Re: the low ferritin...turns out the problem was in my colon, not marrow. My PCP and I pushed for an early colonoscopy just to rule out bleeding there and sure enough, without any symptoms, we found a mass in the splenic flexure. So sometimes, answers can be found with endoscopy and/or colonoscopy. I applaud you for pursuing this. Out of curiosity, is your hemoglobin level normal? Often when it is, some Drs won't then include
a full iron or anemia panel which can be important. My last iron infusion was given for low saturation % while the ferritin level was fine. My local hematologist says one can't be anemic with normal hemoglobin or considered as exhibiting that CRAB feature, yet if I didn't have the iron infusion, I would become anemic. Looking forward to asking Dr A what he thinks about that. Would letting it be and then having anemia change my status? My calcium is now just outside of range, too, so I'm most looking forward to seeing him soon. Which Mayo are you going to if you are comfortable saying?