[goin camping]

Me, diagnosed October 2016 at age 57

by goin camping on Mon May 07, 2018 1:16 am

Hi Everybody,

So I got diagnosed with it in October of 2016. I found out the fun way.

Kept going to the doctor for back pain that was murderous. That went on for six weeks until my mind left. I went kooky and the wife called the ambulance. Funny story there. I'll tell it later.

I spent the following week hallucinating with a guard at the hospital. Seems I kept yanking out the IV and booking it for the door. They figured out what I had. A back broken in six places and multiple myeloma. They stabilized my levels and I got sane-ish again.

Since then it has been treatment, a couple weeks in the City of Hope for a stem cell transplant. Mine.

I'm in remission now on a maintenance plan. I would probably be back at work and being my usual self but the back is now deformed and I can't lift 20 pounds without a massive pain spike. Back and neuro surgeons say they can't operate. Bones still too flimsy. "Come see us again in a couple years. Don't let us detain you. Bye bye now."

As all of you know, a generally unpleasant experience for me and what my wife had to go through. Wow! But I am alive. The wife still loves me and the dogs don't growl at me, so I'm a damn happy guy.

Doctor says it'll probably go active again in 5 to 10 years. I wonder how accurate that is.

[TerryH]

Re: Me, diagnosed October 2016 at age 57

by TerryH on Mon May 07, 2018 7:52 am

That's quite a story, goin campin. Glad you got out of the woods after all those initial challenges.

Did your doctors ever explain to you the reason for the hallucinations you experienced at the time of your diagnosis?

I ask because there have been a couple of other people here in the forum who have posted about similar experiences, but it's not something you hear about often. So I'm just curious what the explanation was in your case.

If you're interested, here's one forum discussion with some cases similar, at least in some ways, to your own:

https://myelomabeacon.org/forum/myeloma-delirium-hallucinations-confusion-t2030.html

Welcome to the forum.

[goin camping]

Re: Me, diagnosed October 2016 at age 57

by goin camping on Mon May 07, 2018 10:11 am

The doctor said that it was caused by blood imbalance. My kidneys were shutting down by the time I reached the hospital.

[TerryH]

Re: Me, diagnosed October 2016 at age 57

by TerryH on Mon May 07, 2018 4:59 pm

Interesting. I wonder what exactly was out of balance. Perhaps your calcium level was too high, partly due to your kidneys failing, and partly due to the myeloma degrading your bones. Or maybe it was just urea accumulating in the blood due to the kidney problems.

In any case, I'm glad it's over and that you've responded well to treatment. Your doctors certainly seem optimistic. A prediction of no relapse for 5-10 years suggests you've gotten a really deep response to treatment, and that you don't have any signs of aggressive disease. That's great!

[Steve Horwitz]

Re: Me, diagnosed October 2016 at age 57

by Steve Horwitz on Tue May 08, 2018 1:07 pm

It was almost certainly high calcium levels. The bloodwork that began my little journey had my calcium levels off the charts, and my GP's office called that evening to make sure I did not need to go to the ER. Delirium is a side effect of super-high calcium.

In retrospect, I can think of a couple of situations in the days before I ended up in the hospital where my mental acuity was not 100%, including especially the day of the bloodwork.

[goin camping]

Re: Me, diagnosed October 2016 at age 57

by goin camping on Fri May 11, 2018 1:51 pm

I think it was the calcium levels. I remember overhearing much talk about this between doctor and wife.