(Be right back … GI sabotage lol…)
As always, so much happens between posts, but I’ll let the pictures do the talking this time. (You can click on the screen shots for a larger view)
Wow! Look how low my IgA is!
Go Darzalex, Pomalyst, Dex steroids
I know it’s hard for some people to “see” me
and hear me speak of how “serious” my situation is
But Numbers Don’t Lie, right!
Bad, Worse, Bad, Better, Better, Wow now :))
Even my IgG is rebounding
After my SCT, my IgG and IgM were always super low…
but a “strange thing” has happened with Darzalez.
I recall reading an about an IgG component…
I’ll find the article link…
Look how Darza has affected my myeloma type
I used to only be IgA
Now I see an IgG component
IgA only ^
And look below
I’ve joined another “sorority”
I’ll be asking my Dr about this tomorrow at my appointment
And for any of you myeloma “experts” reading this,
please comment and let me know your thoughts…
Now I remember where I read about
“As Darzalex is an IgG monoclonal antibody, it can be detected on tests used for the clinical monitoring of M protein and may impact the determination of complete response and of disease progression in some patients with IgG myeloma”
Yippee!! M Protein is still
reads as “Abnormal”,
but not a measurable numerical value!
A few months ago, it was over 3.4
But… after 21 days of Pomalyst
my WBCs plummet, I become Neutropenic,
so it’s Zarxio to the rescue!
I’m such a pro now at grabbing a bit of belly chub
and in goes the shots with no problem
So today was my hubby Jim’s all day adventure with his doctor’s regarding his previous blood clots in his legs issue. Been a tough battle for him, as his veins have died a slow death from years of damage, and he has terrible swelling, DVT, and now “venous ulcers” on one leg from the swelling, and blood flow issues. So incredibly painful for him, and he’s used to being so active and on his feet all the time, and that only exacerbates it. Getting old just stinks! So we spent the early day getting a Vascular Ultrasound and seeing a Vascular Surgeon. Bottom line for poor Jim: compression stockings, elevate the leg, and the home health care nurse comes 2 times a week to wrap the wound. It’s like an “Assisted Living Facility” around here, but we both stuff our symptoms and get outside and take care of all the creatures we are responsible for, even when we don’t feel well. I wonder what a “cement, suburban” life would be like lol… just being responsible for ourselves… oh well, we’ll make it work, as all our animals are a part of our life for their entire life.
After leaving all the appointments today, we were hungry, so knowing I would be at the Chem Lab all day tomorrow, we brought home delish deli food. Not sure what happened to me, but for the first time in a very long time, my GI was not happy, and I spent some time in the bathroom late today, tonight, reminiscent of the Revlimid “volcanic” days! (Remember those stories
? And this one
?) Still have an unsettled stomach, but we’ll see what the rest of the night brings. Hopefully nothing, so I can get it together early tomorrow morning, take my 20mg steroids (as Darza pre meds), get to the lab to take my blood tests, in time for my Dr appointment, then all day Darza IV infusion.
Good news is, I felt pretty good this month. Must be those awesome IgA stats! Just processing all the changes in my life (retirement pushed some buttons), accepting where Jim and I are health-wise and our lack of the “golden years options”. Sshheessh, and I’m so “young” to be dealing with all this…. Anyway, my goals are to begin going through all my “stuff” (still haven’t fully unloaded my office boxes yet), meet up with friends when I feel ok, and take a few local “day trips” when we are feeling ok. Always so much to process. Amazing how life continually throws us curves and forks in the road. My goal is simplicity, less is more, and most important, feeling ok, and just being happy every day. I am thrilled beyond thrilled Darza Pom Dex is currently my “magic elixir”, and I hope beyond hope this triplet cocktail can outsmart myeloma for many many months to come. But I am a realist, and live month to month, blood test to blood test, and know myeloma is super stealth, and treatment changes are inevitable.
I didn’t even tell you the funny story about me trying to buzz my little doggie, and learned being a dog groomer is really hard, skilled work, that I absolutely do not possess! And Domino the attack rooster still trying to attack me thru the fence, but I outsmart him by going out to collect the eggs at night, after he and the girls are roosting for the night, as I dodge the rat-family… And did I mention, I had a nail in my tire, … so many more life adventures. But I have a life, and for that, so incredibly grateful!
My loyal, dear friend Kathy and I finally met up for a Frappucino!
I cancel on her, more than I see her-
And today, while waiting to see Jim’s Vascular surgeon, I saw Karen, our amazing Chemo Lab volunteer. So nice to get out and about once in a while, and feel “normal” ha ha!