Always run down with MGUS

I have multiple myeloma and underwent 16 weeks of chemo. To say it wiped me out is an understatement. Have had more tests than I can count. I was exposed to agent orange in Vietnam so doctors say that was a contributing factor. I tire out easily but can feel my strength coming back slowly. I thank the Lord every day for the VA and their wonderful doctors. My last checkup showed my numbers improving, I go in every 2 to 3 months for blood work than meet with my oncologist. I feel funny saying this but if I had to choose a cancer this is the one I would choose. They are making great strides in the treatment of myeloma and people are living longer today because of it. I was first diagnosed with smoldering myeloma about 3 years ago then progressed to multiple myeloma. Another thing I am very grateful for is I had hardly any side effects from chemotherapy. I think keeping a positive attitude is very important.

@fialalarry49 Welcome to Mayo Clinic Connect. First, thank you for your service to our country. I'm sure your journey encourages others as they read about your strength coming back. What chemotherapy regimen have you been on?
Ginger

Unresponsiveness from a medical team is very concerning. I don't know how invested you are in that particular team but were it me, I would be escalating my concern to someone connected with the facility. There are generally social workers or patient care advocates… Administrators… Someone. One thing that I learned from being a medical social worker is that patients must advocate for themselves. We can't just get angry about it or chat about it with friends and family, we have to confront it head on.
I am not a physician but I do know that it is important to be tested on a regular basis. Some MGUS patients are tested every three months, others who are considered low risk every year. I go in every six months… I am a higher risk but my blood analysis numbers have been very stable. I am comfortable with this.
I don't know your location or the availability of other hematology/oncology physicians in your area, especially those with experience in treating multiple myeloma. But you might consider a second opinion if you want to stay with your current providers.
let me know how this goes for you. I'm rooting for you.

@ppm

@pmm...thank you for your reply. I just was at mayo for another unrelated issue to mgus. I asked if there any changes in scheduling...she said they're under staffed, but since I've received no replies after 2 or more messages, that's concerning. I didn't have time to go into patient care office to inquire today , so im going to call once again .
Appreciate your input, thank you!

I went in once a week for a shot in the stomach, right side one week left side the next week. Was also on 4 different medications while in treatment but not taking any of those since stopping chemo. Everyday I thank the Lord for giving me another day. I try to keep busy even when I am tired, walk my dog a couple times a day, do yard work and some woodworking. Pretty much do what I used to do but now at a smaller pace. Going to see how a round of golf will go soon. I also forgot to mention I have a great support system, my wife is great and my daughter and grandsons live just blocks from me. So I guess taking everything into account life is pretty darn good.

@dazlin
coincidentally, I had to call my teaching hospital patient representative today about leaving me in limbo for a neurology appointment. It seems that difficulty maintaining staffing ratios is a common problem.
Fortunately, I have a great PCP who has a very good nurse and she fixes lots of problems for me.
Good luck and don't stop calling! We have to be that squeaky wheel.

@pmm...i wasn't going to bother after so many tries. Mainly because my blood work has improved and they said only a trace of mgus flagged.
But I really do wonder why they would drop me after all these years with no explanation. Thank you!

@dazlin
Good for you. I'm glad you are going to follow up. Sadly, the M paraprotein and MGUS don't go away and once they know it is there, my understanding is that you will need an annual blood analysis at the very least. So it is good that you are going to hang in there to get some answers.
Ask for social work. I'll bet they can help you.

I’m worried about my blood protein levels too because the lab work came back with abnormal IGM protein levels lower than normal but not sure what it means. Other protein levels show abnormal results and no healthcare professionals will address this . I have a large cyst on one kidney ,bladder incontinence, neuropathy and other symptoms like brain fog ears ringing overactive senses of smell hearing and touch . Can’t stand a lot loud talk in a room full of people and get anxiety easily .