1. < Blood Cancers & Disorders
Profile picture for dtrgran59

blood disorder

Posted by dtrgran59 @dtrgran59, Aug 5 1:26pm

I have recently been diagnosed with monoclonal gammopathy & would like some advice as I’m trying to ‘educate’ myself & understand what I’m facing..

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for katgob
katgob | @katgob | Aug 5 2:01pm

I just looked up what monoclonal gammopathy is and if you put MGUS in the subject line above there are many posts about this topic. You will find a bunch of information. A moderator or other may post some links soon, but for now, start your search.

REPLY
Profile picture for dtrgran59
dtrgran59 | @dtrgran59 | Aug 5 3:16pm

What does it mean if my LDH is high?
What does it mean if my M-protein is high?

REPLY
Profile picture for Patty, Volunteer Mentor
Mentor
Patty, Volunteer Mentor | @pmm | Aug 5 4:40pm

@dtrgran59
Greetings and welcome to Mayo clinic connect. I’m glad you found us.
So you’ve been recently diagnosed with MGUS? We have many members with the same diagnosis. Some have had it for a short time and others were diagnosed many years ago. As you’re probably picking up from your reading, MGUS is not cancer, but can be a precursor to conditions like Multiple Myeloma. Fortunately, the risk of progression to cancer is very low for most of us.
MGUS is usually discovered when they’re looking for something else. I’ll put a few Mayo Clinic publications in the comments below for you for a starting point. Generally, MGUS is not treated, but we are referred to a hematologist/oncologist who will order labs and routine CTs to ensure that our MGUS is not progressing. Sometimes they will order a 24 hour urinalysis and many have had bone marrow biopsies. I have opted not to do a bone marrow biopsy yet after doing my own reading and conferring with my physician. My numbers are very stable. If they should become elevated, we’d probably go in that direction.
When I was first diagnosed, I was pretty worried. I read everything that I could get my hands on but I found that Dr Google was only increasing my anxiety. The more anxious I was the worse I felt. I couldn’t eat. My sleep was disrupted and I just felt weak and puny. You’ll find that we don’t give a lot of advice on Connect. We aren’t physicians but we can share our experiences. We are all different, each with our own medical histories so what may be helpful for me, may not be helpful for you. I do have some general tips to share.
Find the best hematologist/oncologist available. Some of our members have to travel to a Mayo Clinic closest to them or to a teaching hospital to find someone that routinely treats Multiple Myeloma. You don’t have Multiple Myeloma and I hope you never do but you want someone that routinely treats it just in case your MGUS does progress to Smoldering or Multiple Myeloma.
You probably will read a lot, but remember, the best information is what you get directly from your physician. Write your question down and take someone with you to your appointment. I wish I had a dollar for every question. I forgot to ask that was really important to me as I was pulling out of the parking lot.
And lastly, try to relax. I know that’s hard, particularly when you don’t seem to have very much information, but we get our lab results before our physicians do and that means that we have lots of unexplained questions.
I’ll put some good Mayo Clinic information in the comments below. When do you see your blood disorder specialist?

REPLY
1 reply
Profile picture for Patty, Volunteer Mentor
Mentor
Patty, Volunteer Mentor | @pmm | Aug 5 4:42pm
In reply to @pmm "@dtrgran59 Greetings and welcome to Mayo clinic connect. I’m glad you found us. So you’ve been..." + (show)
Profile picture for Patty, Volunteer Mentor @pmm

@dtrgran59
Greetings and welcome to Mayo clinic connect. I’m glad you found us.
So you’ve been recently diagnosed with MGUS? We have many members with the same diagnosis. Some have had it for a short time and others were diagnosed many years ago. As you’re probably picking up from your reading, MGUS is not cancer, but can be a precursor to conditions like Multiple Myeloma. Fortunately, the risk of progression to cancer is very low for most of us.
MGUS is usually discovered when they’re looking for something else. I’ll put a few Mayo Clinic publications in the comments below for you for a starting point. Generally, MGUS is not treated, but we are referred to a hematologist/oncologist who will order labs and routine CTs to ensure that our MGUS is not progressing. Sometimes they will order a 24 hour urinalysis and many have had bone marrow biopsies. I have opted not to do a bone marrow biopsy yet after doing my own reading and conferring with my physician. My numbers are very stable. If they should become elevated, we’d probably go in that direction.
When I was first diagnosed, I was pretty worried. I read everything that I could get my hands on but I found that Dr Google was only increasing my anxiety. The more anxious I was the worse I felt. I couldn’t eat. My sleep was disrupted and I just felt weak and puny. You’ll find that we don’t give a lot of advice on Connect. We aren’t physicians but we can share our experiences. We are all different, each with our own medical histories so what may be helpful for me, may not be helpful for you. I do have some general tips to share.
Find the best hematologist/oncologist available. Some of our members have to travel to a Mayo Clinic closest to them or to a teaching hospital to find someone that routinely treats Multiple Myeloma. You don’t have Multiple Myeloma and I hope you never do but you want someone that routinely treats it just in case your MGUS does progress to Smoldering or Multiple Myeloma.
You probably will read a lot, but remember, the best information is what you get directly from your physician. Write your question down and take someone with you to your appointment. I wish I had a dollar for every question. I forgot to ask that was really important to me as I was pulling out of the parking lot.
And lastly, try to relax. I know that’s hard, particularly when you don’t seem to have very much information, but we get our lab results before our physicians do and that means that we have lots of unexplained questions.
I’ll put some good Mayo Clinic information in the comments below. When do you see your blood disorder specialist?

Jump to this post

https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

REPLY
1 reply
Profile picture for wesleym
wesleym | @wesleym | Aug 6 9:44am

Just one thing to add to what Patty wrote: not only is any particular person with MGUS unlikely to progress to active disease, MGUS itself is fairly common. The estimates are that 10-15% of people over 85 have it, and 5-7% of those over 70 (like me - 73). You don't say how old you are. But there are about 40M people in the US over 70, so A LOT of people have MGUS. Many don't even know it.

So you monitor your condition per physician directives, and live your life.

REPLY
Please sign in or register to post a reply.