I will have to explore the liquid biopsies. Interesting, thanks!
PMM

Thank you very much, Colleen.

I’m very fortunate to have been given the direct email addresses by both my PCP and hematologist. I try not to overly use them. However pursuing the cause of low ferritin is important.

Please know that I value you.

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??

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.

Hello! I'm a Finnish 52 years old woman, who has MGUS diagnos, too much IgA, too little IgM and IgG. I've got this over 10 years. I'm not typical patient, because I've really blond skin, not a man and haven't got any other things from countrysides work or so. I've got mold toxin since 1980 from my school buildings. My only treatment is the blood tests once a year. I'm not satisfied with that, because many time I've noticed, that the doctors and nurses don't know anything about that. During this pandemic, I've been working with kids who has many viruses with them. I've got the first antibiotics last December to sinuses for three years, although there is information my treatment when some infection has found, but here in Finland they gave treatment only for C-19, but I didn't get it either. Now I have 5 vaccinations and had 1 C-19 in last May, but still feeling bad. I've many other diseases too, astma, allergies, Hypothyroidism, lack of B12, D25. But with MGUS, the life is like a joke, they really don't know what to do with that, and can't advice what is the markers with body, when I have to concern about, how can I notice if the situation is going worse. Have a better year 2023 and keep smiling with all our problems!

I also have been just diagnosed with MGUS, but I will be 92 in March. I have gone this round with Breast Cancer at 36, and Dermatofibrosarcoma at 56. For me, this is just one more wait and see. No one seems very excited at this point, and it has just become one more thing I have to watch. My suggestion is to go on with your life, and try not to worry too much about something that has not happened as yet, and may never happen. I have been told, I may never see anything different, and I do not know how long I have had this. It was found, only because I suddenly developed Trigeminal Neuralgia and had some testing for that. Life is good, enjoy, don.'t let this diagnosis take over your life

I too have been recently diagnosed with MGUS. It was found when I was being tested for PMR (Polymyalgia Rheumatica). I was told by my Dr. that with MGUS, there are no symptoms, but instead they monitor you for progression. I can stay in the MGUS stage for years or it could progress. They don’t know which way it will go. So we will watch it, it is out of my control and I will try and live my life to the fullest. I will try and exercise each day, eat right, get as much good sleep as possible and handle stress appropriately.

Dr. Google is NOT the place to look things up. It can lead you down a rabbit hole. My advice is to just listen to trusted medical professionals. I doctor at Mayo who are experts in the field of MGUS, multiple myeloma, smouldering myeloma.

Ask questions and keep asking questions until you feel you understand the answers. That is what you medical team is there for.

I was just diagnosed also. Very confused about the whole thing...

Greetings! It is all very confusing at first. I had so many questions and made a list. I think I vexed my poor oncologist/hematologist. MGUS is a wait and see thing for most of us. I predict that you will get blood work done every 3 to 6 months and your physician will monitor to see if anything progresses.
Did your doctor talk to you about what the plan is to monitor your health?
I was diagnosed almost 2 years ago and go in for bloodwork every three months. Today, as a matter of fact, I’m going in for my quarterly bloodwork and a CT scan to check to ensure that I have no lesions developing on my bones. That would be a red flag for progression. I feel great, and I am not worried. I am asymptomatic. I also have type two diabetes which is well controlled, and there is some neuropathy that accompanies that as well.
On those days when my cup is half empty, I am mad because I have this additional worry but most days, when my glass is definitely have full, I am grateful for the scrutiny that my health gets because of the MGUS. If anything does become a problem treatment will start early.
I’m 70 and active. I want more quality time with my family and to knock a few hundred things off my bucket list.
Don’t let this diagnosis rob you of anything due to anxiety. Ask lots of questions. Make sure you have a good hematologist/oncologist who takes time to explain things and then live your life.
Patty

Regarding Gina’s “life is a waiting game”

Life is a sexually transmitted terminal disease.

May we all enjoy our journeys!