Does anyone else have MGUS?

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?

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!

Did an anesthesiologist reject using your CPAP at Mayo during a colonoscopy? I have found most everyone of my Drs at Mayo Clinic to be quite accommodating. You've had an experience I haven't - visiting the Mothership in Rochester! I imagine it was every bit as impressive as you indicated!! I recently talked with the Clinical Trial Co-ordinator for all 3 Mayo locations and it's possible I may venture there myself for an MGUS diet/exercise study or a
post DCIS trial using metformin. Thank you for the good thoughts, but that splenic flexure cancer is long gone thanks to the skilled surgical hands of "Dr C" at Mayo JAX. In fact we did the 1 year follow up colonoscopy a month ago and I remain cancer free!! Things looked so good I don't have to have another for 3 years so WOOHOO. As they say in the South, God willing and the creek don't rise, I will NEVER have a colonoscopy anywhere except right there ever. I had an awful experience in Tallahassee with the one ordered because of the low ferritin that delayed formulating a treatment plan for the cancer and necessitating tests at both Mayo and a 2nd Comprehensive Cancer Cancer in FL before we knew whether to refer me for surgery or oncology first. I used to live in Scottsdale where Mayo Clinic built their AZ hospital and clinic. I don't know whether to say I'm sorry you went by yourself to Rochester as I often do the same myself. Like you, as someone who has taken care of so many loved ones myself at these places, most of the time I prefer flying solo since it's natural for me to be more concerned about how others are handling things than worrying about myself, and honestly, I prefer processing results and things on my own before putting it out for public consumption. I'm going over often enough that I just leased a place in Jacksonville on a month to month basis to try on living there! I have someone holding down the fort for me in my little house in Tallahassee until I decide and until after I finish a 3 week intensive program through Pain and Rehabilitative Medicine which I'm super pumped about doing! I may feel so much better at its conclusion, I won't need to hardly ever go back, but if I fall in love with it or continue having problems, I have a place!! I looked a bit in the Phoenix area first and other places by top notch medical centers, but this all just kinda fell in my lap. Like you, I'm a warm weather gal and not sure I could do Rochester all the time. Did you freeze to death up there??

Hope your holidays were wonderful and that 2023 is off to a great start for you!! How long have you known you had MGUS? I think I'm 11 years in now 🙂

Ginger, how are you doing with the progression? Hope your team has found the right treatment for you.
You are so right that most all of us were diagnosed as our Drs were looking for answers to a different but likely related problem. May I ask how long you stayed stable? I get being the over achiever, lol. One of my Mayo Drs told me I was type A and in "push and crash" mode because I never allowed myself to much slow down during 2 recent cancers. I responded that he wrongly seemed to think that was a bad thing. Until I realized he was right, of course. We can still learn to do better by ourselves, can't we ? I'm surely trying!

Part of the problem is that if our primary care physicians are running bloodwork, they will never run an iron or anemia panel if our iron, hemoglobin and hematocrit are within the normal range. But often, we can have problems with low ferritin for example or the
iron saturation percentage despite that and need an infusion. Sometimes, I have to push a bit for
them to run the extra panel and that's ok. Patients who advocate for themselves, who
ask questions, and take an active role in their care live longer and better 🙂

Let us know how your appt goes! I'm right after you...mine is 1/18 with the myeloma specialist at Mayo FL. Lifting us both up for good news.

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I am a relative newbie. My MGUS was discovered quite accidentally over a year ago. I was rear ended while driving and had some neck pain. A CT showed a lesion at C2, some artery blockage and multiple nodules on my thyroid. Routine bloodwork was normal but further investigation revealed that pesky M protein in my blood. It was not found in my urine.
The “lesion” turned out to be arthritis. The nodules turned out to be benign, and the blockage was not significant enough to cause hand wringing. I was referred to the local Cancer Center, CARTI, to see a HEM/ONC doc. His diagnosis was monoclonal IgA Kappa.
I am seen every quarter, this time he scheduled me 4 months out.
My numbers have been relatively stable.
I have type 2 Diabetes. A1C of 6.4. Pretty well controlled by Metformin. I feel good. A little less active physically since I retired last March at nearly 70.
I try not to dwell on the “what ifs” and concentrate on things over which I have some control. Right now I’m fortifying my resolve to take all the left-over holiday candy to the little food pantry. 🙂 Don’t worry…I’ll take some healthy things too.
Best wishes to all for a wonderful New Year!

Patty

Hi Tracy. I'm Amanda and I was diagnosed last spring at age 56. My MGUS was found by my rheumatologist and she immediately sent me to a hematologist. I asked a friend who had worked for a local oncologist, and after checking with him, she told me to go directly to a major medical center. He felt that the local doctors don't have enough experience with MGUS or Multiple Myeloma to really understand the nuances and treatments. I now have great hematologist at a regional medical center. He did a whole flurry of bloodwork when I was first diagnosed, as well as a bone marrow biopsy. My biopsy was relatively painless compared to some stories that I've heard. The team seemed very experienced, played and even sang to music while they performed my biopsy. (The music helped to distract me.) My doctor did the biopsy both to confirm my diagnosis and to give a baseline for future tests which will probably happen about every 3 years. I don't need treatment yet. We are just monitoring with bloodwork every 3 months.

My last visit, my ferritin levels were low, so my doctor ordered an infusion. It helped me get my energy back. I had been having breathing issues for a while, but that turned out to be a rare reaction to a drug (hydroxychloroquine) that my rheumatologist had put me on. I am now off of the drug and breathing much better, but the pain is back. I see my hematologist again in a few weeks. I will do the bloodwork next week so it gets back before my visit. I hope to discuss the pain at this visit, as that is the worst of my issues right now.

That is my story. I wish you the best. Feel free to reach out.