[Micki529]

Does the panic ever leave?

by Micki529 on Mon Oct 31, 2016 9:22 am

I was diagnosed in fall 2015. Another check up coming up. I did all the blood work she requested. Since the original diagnosis I have developed high blood pressure (basically controlled by meds) and terrible anxiety. Getting worse as doctor appointments approach.

Does everyone experience this?

My last tests were ok, but I feel as though with that 1% number growing (and I don't understand all that math stuff), I become more and more fearful. My neuropathy is awful (that's how they found the mgus).

She said last time everything was fine, I was just MGUS, but I am sitting here waiting for Thursday (appointment) and waiting for the other shoe to drop.

I guess a big part of it is that I don't under stand a lot about this. The light chains, the spikes, the percentages. It has been explained to me, but I get so scared I go blank.

Here are the tests she ordered.

micki161031av2.jpeg (69.44 KiB) Viewed 2566 times

micki161031bv2.jpeg (102.63 KiB) Viewed 2566 times

[Entropy]

Re: Does the panic ever leave?

by Entropy on Mon Oct 31, 2016 2:36 pm

You are not alone.

I am a physician and I get bouts of anxiety too. And, yes, they are most severe around blood draw appointments and results. Some would argue that being a doc I am better equipped to understand everything. Sometimes I think the opposite is true; I tend to overthink / research things.

Best of luck!

[Aussie]

Re: Does the panic ever leave?

by Aussie on Mon Oct 31, 2016 6:38 pm

I cannot give you a 100% answer. I struggle with it – the anxiety – so badly that I needed to seek professional care. I am now on meds for the anxiety and it has helped me.

The thing that helped me the most is to use the mantra of what's the facts:

Fact 1: I have MGUS, and that's it.
Fact 2: It may never turn into something.

[Micki529]

Re: Does the panic ever leave?

by Micki529 on Mon Oct 31, 2016 7:37 pm

Aussie,

I guess because it is all so confusing to me, I get even more nervous. I don't understand the 1% a year and how that increases as each year goes by. My neurologist tells me not to worry, that he has several patients who have MGUS. My neuropathy has been going on for years, long before the MGUS showed up, and I have been sent to so many doctors that my symptoms don't fit anywhere. I think I could be more calm if I understood it, and all the tests that go along with it, better.

[btdyq5]

Re: Does the panic ever leave?

by btdyq5 on Mon Oct 31, 2016 9:01 pm

Hi MIcki529,

Very sorry to hear about your trepidation relating to upcoming doc appointments. I myself am still without a diagnosis so every time I have a doc appointment looming I wind up freaking myself out and wondering if I'll receive some life-altering information.

Out of curiosity, do you know what type of MGUS you have (IgA, IgG, or IgM)?

It looks like the battery of tests your doc has ordered is right on the money in terms of checking for all the salient factors for monitoring MGUS (CRAB criteria, M-spike, light chains, etc.), so here's to hoping it all comes back good for you!

[Aussie]

Re: Does the panic ever leave?

by Aussie on Mon Oct 31, 2016 9:32 pm

I personally stopped reading up on MGUS. Don't get me wrong, in the beginning I read everything that I could get my hands on. I bombarded my specialist with questions and refused to believe that I have MGUS. I do not fit the profile and I am still young. I gave up reading as it interfered with my daily life.

Ultimately, MGUS stands for monoclonal gammopathy of undetermined / unknown significance. If the specialists do not understand the significance, how would I ever understand?

The 1% rule - If you had MGUS for one year, you have a 1% probability of progressing and so it accumulate. So if it did not progress at 20 years you will have a 20% probability of progressing the next year. Just remember that you are not a number and you will have to live your life to the best of your ability regardless of MGUS. My haematologist told me the more you dig, the more you will find, so rather just stick to the guidelines of monitoring MGUS.

[TerryH]

Re: Does the panic ever leave?

by TerryH on Tue Nov 01, 2016 8:45 am

The risk of progressing from MGUS to multiple myeloma, or some other more serious plasma cell disorder, is 1% to 2% per year. This risk does not change from year to year after you have been diagnosed. As far as we know from studies so far, 20 years after diagnosis, the risk is still 1% to 2% per year.

However, if the risk is, say, 1% per year, then the risk of progressing over the course of a 20-year period is 20%, or 20 times 1%.

Again, however, the risk of progressing in the 20th year is still going to be just 1%. The risk PER YEAR does not change over time, It's just the longer the time period, the higher the CUMULATIVE risk.

Keep in mind that there are certain factors that can affect the risk of someone with MGUS progressing to multiple myeloma or a related disease. These are discussed in this thread and the other web pages it links to.

Also, I suspect when you talk about changes in the risk over long periods of time, you have to take into account some of the statistical issues discussed in this forum thread:

"Risk of progression in smoldering multiple myeloma" (started Sep 13, 2014)

The issues are not as critical for people with MGUS, due to the low probabilities involved. But the issues do still apply.

[Mojbahar]

Re: Does the panic ever leave?

by Mojbahar on Tue Nov 01, 2016 8:26 pm

Hi,

I am still in shock. I found out accidentally by a smart family physician. Sometimes I think it would be better if I didn't know about it, living my life without fear of facing cancer, and some days I feel maybe it's better this way. I don't know. All I can say is we must be content that we don't have cancer and let's just hope it will takes decades for turning to cancer, although people in my age group or younger have more chance to face it.

[Davidg]

Re: Does the panic ever leave?

by Davidg on Fri Nov 04, 2016 1:32 pm

The 1 percent per year figure is of course an average across the whole MGUS population. I read a paper recently (memory hole so can't remember which) that said if your plasma cell percentage in the bone marrow is less than 10 percent, then the risk of progression is virtually nil. I'll see if I can dig it out.

[Davidg]

Re: Does the panic ever leave?

by Davidg on Fri Nov 04, 2016 1:47 pm

Sorry I'm talking rubbish. Less than 10 percent just means MGUS.

This is the paper I had in mind:

Zingone, A, and Kuehl, WM, "Pathogenesis of Monoclonal Gammopathy of Un­de­ter­mined Significance and Progression to Multiple Myeloma," Seminars in Hematology, January 2011 (abstract; full text at PubMed Central)

The risk of progression can be measured in various ways so it is possible to find out your personalised risk IF you want to know.

David