Monday, February 24, 2020

A Month Without Dex is a Month of Bliss

In May I'll hit the 9 year mark since my myeloma diagnosis. When I think about it, it's pretty darn amazing. In 2011 I certainly didn't expect to make it to 2020. I figured I'd last five years max. And given all the frightening information I read when first diagnosed, five years seemed generous. While I didn't live footloose and fancy free during the first five year period, I definitely didn't bother worrying about certain things.

For the past three years I've been on Darzalex and Pomalyst and by far, it's been the best drug regimen I've been on since being diagnosed. I do my monthly Darzalex infusion and take 1 mg of Pom daily for 21 days with a seven day break. I can honestly say it wasn't until I started this regimen in late 2016, that I started to believe I might live a heck of a long time with myeloma. Certainly I know that any one month things can change and Darzalex stops working. I continue to get a twinge of anxiety when I do my monthly labs.

With my infusion I get 12 mg of Dex. We've lowered my dex over the years, which I tolerate much better. Even with the lowered dosage the emotional crash from my Dex infusion has become increasingly unbearable. I take 8 mg of a second steroid, Medrol, every other day, to help smooth out the ups and downs of Dex. I'm not certain it helps, but I can say Medrol is pretty innocuous in terms of how it makes me feel. But as I written before, I absolutely hate Dex. And over nearly 9 years of Dex, my eyes, bones and skin have taken a real beating.

Leading up to Feb 14infusions I was really dreading the Dex. I talked to Dr Phan and he agreed with my request to skip Dex for a month. And wowzers, it sure made a world of difference. No rage, no increased anxiety and most importantly no scrapping the bottom of my emotional bucket. I checked with Berenson after the fact and he denied my request to permanently banish Dex. It was worth a shot. At least I got one Dex free month.

On the uber positive side of things, my latest lab results were terrific. I feel as good as I've felt since before I was diagnosed. Cruising along.






2 comments:

  1. I'm really glad you're still here. Mom

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  2. So glad you got a month off, Matt. Seems like good timing too. I can’t imagine being on Dex still. It was rough during that induction period at 40 mg/week. Holy cow, that was a crazy invitation into the cancer world. I’m wanting to ask my dr to be done with Zometa but haven’t had the courage to ask yet...

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