Could we talk about anxiety with MGUS

Posted by amyboylan1 @amyboylan1, Feb 3 7:52pm

Hi Group,
I am having a lot of anxiety about my MGUS progressing. Does anyone else deal with this on a regular basis? Could you share how you manage your fear. My oncologist really didn’t share much with me and she doesn’t seem to like answering questions. I think she is experienced and knowledgeable which is why I’ve stayed with her. Any thoughts on diet and exercise……and worry. I would greatly appreciate what you have to say. My fear is taking over my life. I was diagnosed last June.

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murray3 | @murray3 | Feb 11 12:55pm

In reply to @amyboylan1 "How are you feeling? Do you have energy?" + (show)

I am feeling quite good. Cancer fatigue still remains and once I get myself going, my energy level has been slowly increasing.

amazon13 | @amazon13 | Feb 25 3:00pm

I was diagnosed with IgM MGUS in 2009 and it was my brilliant immunologist who told me “your life is like the water in a stream. You can’t touch what has passed and you will never know is coming so enjoy the beauty of what you can see and touch today.” My cancer has not taken the normal course but I’ve been sure to not allow it to be the most important each day. Today I have T-LGLL and the bees and geckos will have fresh grated apple water. It is possible to find joy daily.

amyboylan1 | @amyboylan1 | Feb 25 3:57pm

In reply to @amazon13 "I was diagnosed with IgM MGUS in 2009 and it was my brilliant immunologist who told..." + (show)

Could you talk a little about your journey and where you are now? Thanks for sharing. I have a lot of anxiety about my future which does me no good.

msh466 | @msh466 | Feb 27 9:09am

What made me have less anxiety in regards to MGUS and SMM which I have is that for the rest of my life I will be blood tests. Bone scans every 4 months for 5 years. Then every 6 months after. That it tends to be slow growing. Not always but usually. So I will always be under an oncologist care. That helps. MGUS rarely ever develops into SMM. Most people live their entire lives free from progression. That helps. Also I have low risk SMM which again may never progress. This makes my anxiety somewhat lessen plus being seen at Mayo with very smart doctors helps. Also and importantly meds help. Take some of the edge off

lact | @lact | Mar 3 1:00am

I found out I had MGUS 12 years ago, in the beginning when I had my annual visit with the oncologist I really got stressed out, it’s really hard not to. Oncologists don’t explain MGUS and it’s really complicated. If your numbers are low you are ok. I was told what usually happens if it’s gonna go up, it goes up a bit gradually. It doesn’t go from zero to 3000 overnight.
My oncologist told me he did not get concerned until patients M spike got into the 3000’s.
Don’t make yourself sick worrying about this, 80% of people with MGUS never elevate to major problems.

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