Mastodawn

My world in a snapshot. I got an oil change and an infusion of Reclast today at Kaiser.

So what's going on, Bob? Why...I'm glad you asked!

It seems the 6 weeks of pelvic radiation four years ago did a number on my hips and femoral neck. I beat cancer but flunked my DEXA scan. This was predictable. My bones are now shit... and all the exercise in the world ain't gonna to solve the problem. So I did my research** and came to my own conclusions:

GIVE ME ALL THE PHARMACEUTICALS! STAT!

** Speaking of research, I had a good laugh last week when I came across a doctor on YouTube who said, and I quote, "your femur is the bone you would give your dog to chew on." My femoral neck, being spongy, is probably extra juicy 😁

Anyway, this is going to be fun, once I get through the achy side effects.

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saarmuller

@BobHorowitz I had my first infusion just a month ago. Side effects were a lot worse than suggested but I survived Hopefully it did it's work as well. I hope you feel better soon!

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Bob Horowitz Mar 27

@saarmuller
You too, eh? I'm in good company 👍

The infusion itself was a breeze. Much easier than the chemo 4 years ago. No PICC lines, no burning, no nausea... just a pleasant procedure with a very friendly RN. I was in and out in under an hour.

Tonight I'm achy but still gay 😁

A year from now we will do another bone density scan... And at some point within the year they will check kidney values and a few other things to make sure everything is going smoothly. Four or five years out they'll probably want me to take a drug holiday and give the body a year or two off to avoid side issues. We'll see. I'm also rotating in some new exercises at the gym that may also help a little. But damn, I really hate the stairmaster.

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saarmuller Mar 27

@BobHorowitz It is given at home here now (Amsterdam) also an hour, but a few days earlier you have to stay at home to receive the infusion package..I started my treatment a year ago and as it is primarily my spine that is desintegrating I first got a year of Romosozumab injections. A 12% improvement (in the spine). Zolendrinic acid (Reclast) is required to consolidate and hopefully further improve.
And yes, I do gym, but rather careful since I know how brittle my spine is.

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Bob Horowitz Mar 27

@saarmuller
Ah, that's a great improvement! You can gain a full point on the T measurement with that kind of result, which is often enough to move you out of the danger zone.

I wish Romosozumab / Evenity was an option here, but for men it is only approved for extreme cases.

Spines respond better to treatments, from what I've read. Hips are stubborn bastards but easier to replace 😁

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saarmuller Mar 27

@BobHorowitz The main thing I learned is that T scores are overrated, in particular when as in my case some vertebrae are collapsing. I got Dexa scans since 2012 and with just vitamin D the T's seemed not too bad. But as the depressions in my spine seemed to progress and I rather quickly got shorter, I asked for a referral. Where the misleading T scores where explained and the most agressieve treatment started...