Could we talk about anxiety with MGUS

Yes, it’s the lambda/kappa ratio.

Like others, I was diagnosed with MGUS about ten years ago, male age 77. I see a hematologist twice a year to review my blood work. He has mentioned the possibility of bone marrow biopsy numerous times over the years, but so far, so good. I also have thrombocytopenia (low platelet count) so any cut is an adventure.
In the last year, I've also been diagnosed with chronic kidney disease, yet with all of this going on I feel fairly healthy.
Hang in there and follow your doctor's suggestions!

So here is my dilemma. I’m one of those unfortunate SMM patients. Yes most people will never develop into this but I have. I am dealing with two doctors in over seeing my care. I have one here close to where I live. The other one is at Mayo in Rochester. My gut tells me I would get better care at Mayo but it is 1 1/2 hour away. The doctor the one close by is head of the cancer center but has little in dealing with MM. If my condition goes south it’s nice to have the convenience of doctor being close. But clinical trials I’m interested in are all at Mayo. For now I am stable. In many cases SMM can last for years or life. Just thought I would throw this out there for input. Thanks

Thanks for your share. Have you done anything special to keep the MGUS from progressing? 10 years sounds good to me with no progression.

No, I really haven't. I walk for exercise, but probably not as much as I should. All my doctors recommended not consuming alcohol, so I gave that up probably 5 years ago. I've mysteriously dropped about 25 pounds in the past couple years as well.

Steve, thank you so much for this post. I have a recent. Diagnosis of MGUS (past November.) last thing I expected to discover at my 75yr annual check up . I’ve never had a prescription or treatment for illness in all those years. My ONC/HEM mentioned bone marrow biopsy and it terrified me. hasn’t happened yet. Hopefully she will not be in a big hurry to try that, but I haven’t had my first six month check up yet. You give me hope and I thank you for that. I hope your future is bright and beautiful. You inspire others. Nothing better than that.😃

I've talked to my hematologist about the biopsy several times and he tells me different people have different reactions to the biopsy. He says one patient will feel like it was the most painful thing ever, and another will say "are you done, I hardly felt it" so I'm hopeful I'll be in that group.

I was told the other day my transplant hospital had found MGUS test results from back to 1999. Since then I was restested a few times but only has slightly high Alphas but my M protein is negitive in blood and urine tests a couple weeks ago. Now I have to see Hemotology in the Cancer wing of my hospital annually. Been told 6 months back to not worry and in recent test. I was testes by Neurology 6 months back for SFN in my feet and below my knees. I have to accept the fact I could get blood cancer after 2 liver transplants since 2000. I read about it but try to not worry since the doctors have known about it since my first transplant. I do worry since I take immunsupressents since the fall of 2000. This drug can cause other issues.

I have had 4 bone marrow biopsies as i have had MDS. I am one who will say it is not painful, but really a number of sensations. Also know, I know people who have been sedated for the process. The whole procedure is less than 20 minutes from check in to done.

Just had bone marrow biopsy this week- I stressed SO much when I arrived pre op BP was 218/? also have BIG time "white coat syndrome" even going to my primary visits.

Was in pre op about an hour and spoke to nurse about the procedure and she explained all that would happen. Honestly for me it was very easy and the only pain was that night and the day after a little soreness at site. They gave me twilight sedation- I was awake enough to answer a few questions but don't remember most of the procedure. Recovery was quick and I was home resting shortly after.