[catsunami]

Re: Suspected MGUS

by catsunami on Fri Apr 01, 2016 2:39 pm

Hey Multibilly,

Thanks for the response! I really appreciate your outlook on things - it makes me feel not so alone in this

I'll give him a call and ask if I can skip the 24-hour UPEP this time, since I just did it in January and it showed nothing.

Did you ever have your glucose tested?

I think I'm doing a skeletal survey because the wait for MRI in Canada is insane if you are not considered high priority. I waited 9 months for a knee MRI (which healed by the time I got it anyway), but only a few days for a brain scan when my inflammation was acute, and 1 month for a repeat brain scan. It varies, but I think a whole body MRI is too time consuming for them, or something.

I was actually thinking about the skeletal survey yesterday. I had a lot of xrays done this year on various parts of my body that showed no abnormalities, so at least I know my chest/ribs, skull and knee are clear! That leaves arms and the other leg. Those parts of my body I actually have no problems with, so I feel more OK about this.

I will look into DEXA. Thanks again!

[Multibilly]

Re: Suspected MGUS

by Multibilly on Fri Apr 01, 2016 3:49 pm

Glucose testing is a fundamental part of the metabolic panel test. But, I'm not sure if it has any value as far as tracking actual multiple myeloma progression (maybe somebody else may be on top of this)? However, there are a lot of interesting debates on whether glucose levels might potentially cause cancer progression (you will find some good scientific debates as well as a lot of junk-science comments on the web on this topic). I like to see my glucose level now and then just to see how well I'm doing at keeping it low in the off chance that a low glucose level might be a good thing in helping to prevent progression to active multiple myeloma.

Note that some folks like Cathy live and die by their glucose (and ketone) levels in order to help keep the disease at bay.

https://myelomabeacon.org/forum/ketogenic-diet-multiple-myeloma-t3393.html

Did you already have your lower spine xrayed? I would at least want to be sure that my bases were covered on that part of my body.

[catsunami]

Re: Suspected MGUS

by catsunami on Tue May 10, 2016 2:07 pm

Just a quick update. I saw my hematologist today - nice guy.

The skeletal survey came back normal (though I do have scoliosis lol). The blood tests all came back normal - CBC shows good levels of hemoglobin, RBC, WBC, creatine is normal, calcium is normal (although close to the bottom end of things). The protein levels have decreased (total and IgG) since last time. The 24 hour urine also came back normal, and creatine is within normal range.

My M-spike is now 0.65 g/dL, so pretty much the same as the 0.68 g/dL before. The FLC ratio is stable at around 2.15. The hematologist said this is normal, and not a cause for concern, it could have been this way forever.

The plan now is to recheck in 3 months with just blood work, then in 6 months with bloodwork and urine. If everything is stable, after that will be 2x a year for a year, and after that it will be just once a year.

He thinks this is related to my autoimmune issues (due to my age), perhaps MS, so he can't give me a progression rate given that I'm a bit of a strange case.

All in all, good enough for now. However, I think I caught cat scratch fever this weekend from my friend's new kitten (who bit me, what a #*$!@!), so I might go see my GP anyway.

[Multibilly]

Re: Suspected MGUS

by Multibilly on Tue May 10, 2016 5:07 pm

Hey Catsunami,

Under the circumstances, those lab results sound great and they are probably welcome news. I'm happy for you.

[catsunami]

Re: Suspected MGUS

by catsunami on Tue May 10, 2016 10:55 pm

Thanks Multibilly! They're good news! I was of course hoping that everything would come back normal (no M-spike, etc), but it is what it is

[catsunami]

Re: Suspected MGUS

by catsunami on Tue Aug 30, 2016 12:02 pm

Just an update ...

I had my follow up today. My M-spike is pretty stable around 7.5 g/L (0.75 g/dL). I was sick when I did the blood work, and I wonder if it's just slightly elevated from last time due to a polyclonal background. Anyway, my hematologist isn't worried.

The FLC ratio decreased to the normal range! Which I am pretty excited about. It is now 1.42.

Next follow up is in 4 months, and I have to do urine collection for that one again.

The doc said that there is a 2-3% chance that it will still resolve on its own. We will see!