Stop This, Start That, Moving On

Hello 2.17.17

Ok Pomalyst, you’re history for now, as you’re affecting my CBCs in a terrible way and you’re not really pummeling myeloma anyway. So GoodBye Pom. I’m Neutropenic, as my immune system apparently can’t handle your “power”. Dr P thinks Pom at 4mg is just too much for my fragile system right now. But I do wonder, being on this triplet cocktail, is it only the Pom doing this? Is Velcade a culprit too? And Dex? Of course they all are! See, this is why I have always preferred singular agents with Dex, so we can see which chemo does what to me, independently and individually. With combo cocktails, who knows which is doing what, right? Myeloma buddies, how do you sort all this out?

My appointment was full of information and lots to talk about and decide.

While looking at my recent labs, surprisingly my IgA and M Protein ACTUALLY CAME DOWN A BIT! But Dr P believes they are still way too high to continue another month status quo with Pomalyst, Velcade and Dex. I agree. Let’s slam those myeloma cells, get the numbers down (hopefully), then talk about the next chapter. Ugh, I just don’t like medication changes, and always hope beyond hope that I can get longevity mileage out a treatment regimen before tossing it out. But as they say, numbers don’t lie, right…

 I think this drop is meaningful

 M Protein down a bit too

Dr P wants to begin Darzalex in a week or so (Feb 28), and she also suggested adding Ninlaro to the mix, with of course Dex. Can you guess my perspective on this… Yep, I said… well No! I prefer to begin a new chemo singularly, as I mentioned above, as I like to know which medication is causing what. And I think it’s important to know if each agent is working independently. No I am not a Dr or chemist or medical researcher, just one who knows my body, and I am a “less is more” person, as I have mentioned a zillion times before on this blog :))

I agreed to begin Darzalex with Dex, and hold off on a third med. Let’s see how I do on Darza, and if it is the “new wonder drug” many have indicated it is. We’ll find out if it indeed does “wonders” for me as it has for others. Then we can add back Velcade, or Pom or Rev or try Ninlaro. Choices, choices, choices. OyVey!

But then, after processing and mulling alllllll this over, I began to think: “if my current cocktail is now making a dent… why CHANGE??” Oh, that’s right, my numbers are really high lol, and also one of those beasts is dragging my immune system back to SCT hospitalization status. Ok, Darza here we come Feb 28.

I also consulted with the chemo specialty pharmacists right after my appointment and let them know what’s happening (they know me well) and I quickly asked a zillion questions about the scary first infusion. “Should I premed with my regular dose Dex before I come?” “Should I bring my own inhaler for asthmatic reactions?” “Should I premed with anything else?” Well, yes, yes and yes they replied and suggested yes, premed with Dex, premed a few days before with Claritin, Zertex, Allegra, Benadryl, etc. I thought these were awesome suggestions, based upon what I have read the first infusion challenges are! Drug up Julie!


But I still wonder… should I stay on the current cocktail I’m on?? It is slightly working. Ugh, I hate you myeloma! Leave me alone and stop consuming my entire being and life!
So that’s the plan man, and I get 10 days off Pom and Vel to hopefully boost my system back up. I took 20mg Dex prior to my appointment, as I didn’t know I wouldn’t be getting my weekly Velcade shot. I took my remaining 20mg Dex today. Yiippee, Dex me up you crazy 40mgs, buzz me up for 48 hours! But the type, length and intensity of my looming crash and side efffects is always a nasty surprise. It’s worth it, as I felt pretty good yesterday and today, so who knows. Felt good, that is, for being sooooooo immune compromised. Good enough to get out in this huge rainstorm So Cal is experiencing:

 I’m such a rebellious cancer patient-
Here I am immune compromised and Neutropenic, 
but you can’t keep me away from 
Nature and all her beauty and beast!

 Normally, this area is dust bowl dry, 
but at it’s peak, this must have been over 7′ 
of raging river!

 Logs, telephone poles, coverts, lumber, mini boulders
all went sailing by, like they were feathers!

Beneath this raging water
is normally a 5’+ drop off! 
Then add 2’+ more of water
Very intense!

Those pictures may not look dramatic, but our normally drought dry creek bed was a roaring flash flood river today! WOW! We were all over the news too. I took a lot of pictures and videos, got quite wet and so did my phone, so I had some delay in downloading and retrieving pictures. I will add more tomorrow, so check back.

 Oh yes, the fierce winds remodeled our corral roof! 
More like a sunshade or rain slide now!

So much seems to always happen, when I think so little will LOL. Such is life, and I am so very grateful to have this life, myeloma drama and all, as long as I can breathe deeply this life of surprises, love, beauty, laughter, unexpected excitement and beautiful people and places surrounding me!

And this happened to poor Jim a few days ago!
He slipped and fell on our tile entrance
where I had a towel from all the rain.
And that was before this BIG GIANT of a storm!
He’s much better now! 
And then the next day this happened!
Our son Scott planned a fun and fancy date for all of us!
See Myeloma, you can’t stop me from
living life in the “small” way I do :))

Thank you everyone for checking in and caring about my life, status and story as you do!

Here’s an interesting SCT article. I always wondered how they “cleaned” our stemmies prior to the stem cell transplant! clinical-trial-cleaning-up-stem-cells-before-they-are-given-back-during-stem-cell-transplant/ 

Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!