**UPDATED** :)) Feeling a bit better now.
May 26 turned out to be a yucky blah crash side effect day, with icky GI unrest, and I’m in a no helium fog :(( Maybe I should abandon my symbolic posting on the 6’s and post randomly when I have fire and pep? Have you noticed, when I’m on my Dex power surges, my blog posts have so much to say. Darn, I should have written on Mon or Tues. Oh well, that’s my life of extremities!
Here we go… wheeeee… this fun picture, of a recent (very unusual) break week adventure, tells the story of my roller coaster myeloma life. I’m trying, really trying, to live my life, as fully as I can, while Myeloma works overtime ambushing me.
A crazy unpredictable Roller Coaster
Jerked this way, jerked that way,
Up Down, Up Down, Trending Up
We’re really not in control, so just enjoy the ride!
Here’s my status for May:
Booo, my numbers are Up again. AGAIN! Up, Up, up the myeloma roller coaster I go… Seriously life, what’s “up” with this! I honestly didn’t expect this status. Get me off this crazy Myeloma roller coaster! I’ll take the real ride any day!
So the other day at one of my Oncology Hematology appointments, I laughed as someone used the term “Trending” (in a serious context) with regard to my IgA and M Protein TRENDING UPWARDS. I’m Trending! I’m Trending! See there is a “funny side” to all of this craziness. You know, like “Trending” on social media?! hahaa! I’m Trending! Ok, maybe not so funny, but it gave me a good giggle. I’m Trending, but not in a good way…
Here’s my Trending Upwards chart of my IgA and M Protein that I’ve been reposting each month for perspective on my situation and statistics:
My type of Myeloma “trends” via my IgA and M Protein levels:
(I’m IgA myeloma) Immunoglobulins explanation
Normal IgA = 70 – 400, Normal IgG = 700 – 1600, Normal IgM = 40 – 230
Date IgA IgG IgM
240 < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:
233 < 18
230 < 18
262 < 18
228 < 18
221 < 18
227 < 18
226 < 18
4/17/16 717 251 < 17
M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0
July = 1.26
Aug = 1.01
Oct = 1.58
BEGIN NEW KYPROLIS + DEX TREATMENT:
Nov = 1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb = 0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April = Abnormal, but M Protein value not detectable (On Dex)
May = .75 !Booo! That’s a BIG upward Trend in just one month!
So process this with me…
I had remarkably successful results initially with Kyprolis + Dex, beginning Nov 2015. We then tried tapering off the Dex, seeing how I would do without it, as my Oncologist was concerned with my long term use of Dex- (2010 @ 40mg, 4 days on, 4 day off, for 5 months) and then beginning again late 2013 @ 20mg weekly, after coming out of Remission, Summer 2013.
Well going off Dex was a short lived experiment (mid Jan-mid Feb), as we’ve now learned that my type of myeloma runs scared from Dex steroids. I have good results when on Dex, so it looks like I always have to pair my MM meds with Dex. Ugh! Such a mixed blessing, as I love the Up Surge, but Hate the Crash! One thing I do, that I should probably not, is Not taking Dex on my Kyprolis break week. I am just so desperate for “normalcy”, that I take a break from All meds during my break week. Ssshhhh, don’t tell on me…
So here I’ve been, doing a relatively “new to me” treatment since Nov 2015, and it’s only May 2016, and now my myeloma stats are Trending upwards rather quickly. Honestly, I’m surprised, shocked and really sad. I was very encouraged that this new treatment regimen would be my new “elixir” and keep myeloma suppressed for sometime, like Revlimid did. Yikes, what does this mean? Is my situation getting worse, faster now? Is this just an unusual anomaly? Is this just a temporary upward Trend? “Trending” on social media is cool, right? But Trending upwards with life altering “bad” cancer stats is not so cool.
Granted my IgA and M Protein is no where near where it was at diagnosis, Dec 2009, the upward current trend is quite concerning. My local Oncol/Hema and my SCT specialist are both encouraging me to UP the Kyprolis dose and/or add another medication. Guess my response to that???
Nooooooooooo, not yet!!! I have a life I want to live! My side effects are already so disabling. I am already so limited by myeloma and treatment side effects. Noooo, this can’t be. I have plans for June! 2 weddings. Nooo way, I can’t increase my dose! Not now. Ironically, I was even planning to SKIP a few treatment weeks, just so I could ensure I would be ok for the wedding weekends. Dang you Myeloma, you really mess up my life, my fun and my plans. I hardly do ANYTHING as it is, and I now have to process this curve in the unwanted myeloma road.
Up Down, Up Down, Up Down goes Myeloma- It is a LifeStyle
Sick, Well, Sick, Well, Sick- goes the side effects..
Good Days, Bad Days, Good Days, Bad Days- ridiculous way to live..
These are the things I ponder all the time:
Higher Dose medications vs Quality of Life
Little trips, fun things, stay the course. Or up treatment options and up side effects?
Preserve my organs for the long term with lower dose meds vs numbers increasing vs a higher dose increase? What to do? What to do? I want to live my life, not just treat cancer…
If I had been a “sickie” all my life prior to Dx, this absurd current lifestyle may have not been so shocking to me, but I am just so frustrated with illness controlling my life. I was always so active and well. Truly, myeloma limits my life so much. I marvel at all the other people I know and follow that appear to have “relatively normal” lives. How do they do it? How can they travel? Do marathons, work? Be around the public, and sweet grandkids and kids who are like “Petri-dishes” of germs! Must be the difference between IgA and the other types of myeloma?! My immune system is particularly hard hit, vs others who are horribly impacted in their bones… Both are awful! But forward I go, one day at a time, processing processing all of this, all the time…
Here’s a wonderful video that summarizes my life in so many ways. There are so many of us that “appear ok on the outside”, but are really quite sick on the inside with chronic incurable illnesses: Pretty on the Outside, sick on the Inside
those few days I can leave my house, whether on my chemo break
week, or a day here, a day there, an hour here, an hour there… I WILL
ENJOY MY LIFE! Here’s proof of that:
We had a blast!
Some interesting links for you:
Ha! Not only me writing about the Myeloma Roller Coaster:
and knowing I am still making a difference in the world.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!