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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?
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Thanks for your response and this conversation, @tallyteresa. My hgb and hct have both tended on the high side of normal. If I do not drink enough water or ginger tea both can go above normal and when both are elevated that high combo gets a new dx name: ERYTHROCITOSIS. I'm due to check my colon. Since I have obstructive sleep apnea and faithfully use an Apap, I do not do colonoscopies. I would, but twice when I had a colonoscopy the anesthesiologists were too arrogant to use my CPAP during the procedure.
Don't worry, if anything happens I'll be here! They apparently refuse to understand that using a pap prevents anything from happening.The American Sleep Apnea Association advises people with sleep apnea to take their AUTOPap or CPAP apparatus with them for procedures. They can not work if anesthesiologists refuse to use them. Instead I will cease any vitamin C, (no Preservision) then do three fecal smear card tests, then an Exact Sciences Cologuard test will be ordered by my PCP. It's been three years since the last one so Medicare will pay for it. I live in Los Angeles and had hoped to drive to the Arizona Mayo Clinic. Mayo insisted I go to Rochester, MN instead. I completely followed their guidance, right down to paying $25 extra for their travel guide's recommendations. Which hotel, even to stay on a concierge floor. Excellent! Though I was there alone (already having been a past caregiver for both parents and husband while their lives ended) dining in the small dining room with interesting others meant I never felt lonely. An extra Bonus was that when I needed to stay longer Mayo covered the extra charge to change Delta flights. I loved being there; exploring their fabulous art collection was a joy around every corner. During my week and a half was time to take in a nearby concert as well as other events: in short be an exploring tourist in the community. People in real winter areas live differently than Californians. Especially in December. Going to Mayo Clinic became a vacation with medical benefits. Were it not for ongoing Covid sequestration I would have already returned. You've given me more to google: full iron panel or anemia panel. Thank you! Already googled your Dr. A. Hope your colon splenic flexure and calcium situations will normalize. Thanks again!