Hellooooo August, Good Bye Awful July!


Hello August!
Looking forward to never ever seeing another July like this past one. Cannot believe all the drama I experienced, and I am so glad to have it behind me!

Had my Darzalex infusion on Monday, July 30. Took 40mg Dex steroids prior to, so I always feel ok on infusion days. I “enjoy” the up up up, relief relief relief from the steroids, then the sleepy calm of the Benadryl during the Darza infusion. I never did much medication, not to mention, never doing drugs or alcohol prior to my myeloma diagnosis, so here I am mid life, experiencing these crazy rides from the cancer meds. Of course the medication CRASH days later are no fun, but as long as I don’t break any more bones, or have extreme fever and pain beyond pain like I did from the Zometa infusion, I can suffer along with all this insanity. (Yes… the future… I know… more is always coming… Myeloma will continue to mutate and challenge me forever, until, until… but I don’t focus on that… One day, One drama, at a time for now…, I just want to feel somewhat ok, if I can, if myeloma let’s me… I live in the moment now, I live today…

So just a quick update prior to my usual On The 8’s update, as I had such awful news my last few posts. The “good” news is my IGA “only” went up 100 points this month, the Zarxio brought my WBCs up into the super “normal” range, my rib is better, pain and fever from the stikn Zometa is gone, and my Dr and I agreed to going back to Darzalex every other week, to see if that will bring my rising IGA back down.

WOW! look how 3 injections of Zarxio raised my 
WBCs from 2.0 to 8.2!!
WOW, look how Zarxio raised my ANC! 
From .71 last labs, to 5.93 in just 3 injections!

And now on this again.
Was on it in 2010 at the beginning of all my treatments,
due to how immune compromised I always am,
and the high dose steroids.
Looks like yellow preschool finger paint!

“USES: This medication is used to prevent or treat 
Pneumocystis jiroveci pneumonia 
(previously known as Pneumocystis carinii
pneumonia or PCP).” 
“It is an antiparasitic that prevents the growth 
of the
germ responsible for this infection.”

The longer myeloma and I have this crazy relationship, the more I know I just don’t want to suffer, and feel awful. I’m just not as “brave” as I used to be. I prefer not to jump from one type of treatment to another (if possible), and I definitely don’t like the risk of UNKNOWN NEW SIDE EFFECTS FROM NEW TREATMENTS (altho I know this is ultimately unavoidable).

Everyone is suggesting I get into clinical trials, do another SCT, or go for the CAR T, or change this, change that, get 2nd, 3rd opinions, etc etc etc. 8 years is a long time (at least for me) to be on continuous treatment, so if I can lessen my side effect suffering, I’m all about that. Plus my stats right now just aren’t anything to “panic” about. My IGA is “only” 3x the high end of normal, I don’t have a M Protein spike, and equally important, my organ status is good! The elusive “remission” is not my goal. Feeling ok, and having myeloma “controlled” is my goal. And of course… QUALITY OF LIFE! Everyone approaches this crazy ride differently, so for me… less is more.

My Drs have never let my roller coaster status get out of control. We treat continually, and when the numbers jump quickly, or seem to not be responding to the current treatment, we switch. My Drs hit my myeloma intense at Dx 2009/2010, then after coming out of SCT “remission” mid/late 2013, then late 2015, then late 2016, early 2017. I’m super happy that Darzalex, Pomalyst, Dex has been working for me since March 2017!!! I’m actually kinda spoiled by it, hence not want to switch, and hoping going back to every other week, will bring me back to where I was this time last year! Yep, as awful as all this is, thankfully my body responds well to treatments… when it doesn’t… I’ll cross that swaying bridge when I come to it. But in the meantime…

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