Hello Everyone. Hope your June is beginning happy!
You know my status from my previous “Holey” posts, so I’ll just give you the stats today :))
Darn you IgA, stop climbing!
A little perspective from where I was
just before beginning Darzalex, Pomalyst, Dex
M Protein still not showing…
Wonder if Darza or?
could be suppressing accurate readings?
This range always gives me the head’s up
changes are happening…
My support team I brought with me to
this appointment. Just wanted other ears :))
So yes, I agreed to Zometa infusions to “strengthen” my swiss cheese bones. I still don’t feel great about it, but from what I read, half had problems from it, the other half benefited from it. My Dr suggested every month, I kinda laughed and said a resounding NOPE! Let’s go every 3 months, and the first with a very looooooong infusion. If you missed my post with my Pet CT Scan report results, click here. Yes, I base a lot of my decisions on what I discuss in person and read from other patients. Fortunately there are so many legit discussion groups out there now, and all of us patients reporting in about our treatment experiences. Of course medical research and professional medical recommendations are first, but I won’t ignore legit patient experiences.
Additionally, my Dr suggested we up the mg of Pomalyst. So I’ll be leaving 3mg alternating with 2mg behind, and increasing to 3mg Pom only, for the 21 day monthly cycle. Hello Neutropenia to come. Hello Zarxio Neupogen to the rescue…
The final new protocol:
Pomalyst 3mg, 21 days on, 7 day break
Dex steroids 40mg per week
Zometa to begin in July
I’m so tired of myeloma. So tired of having to think about all aspects of my health all the time. So tired of having to be concerned with treatment to stay alive, side effects from all the treatments, cooties, and life focused on everything medical. After 8 years battling myeloma, I’m actually forgetting what a spontaneous “normal life” is. A life of just going, doing, being. Free from all this self focus. I just want to feel good, laugh, play, focus on enjoying life… not living a life trying to avoid death…
Live happy, live well, and make a difference somewhere, somehow,
with someone or something as often as you can