Double the Roids.. Double the Fun.. Double the Crash!

Hello 9.26.16
Thank you everyone for always checking in and caring about my life and Myeloma status!

Roid Rage coming:
Oh yes, here we go again. So at my last Dr appt, we discussed the upward upward trend of my numbers. My Dr suggested we try upping my Dex steroids from 20mg to 40mg per week. Here we goooooo! So rather than doing 10mg + 10mg on my Monday, Tuesday Kyprolis infusion days, I will now do 20mg + 20mg on my Kyprolis infusion days. WhooHoo… hellooooo mega steroids again. Back when I was first treated (January 2010), I started on 40mg per week. Then I had a horrible awful allergic skin rash reaction to Revlimid, so we upped my Dex steroids to 40mg, 4 days on, 4 days off for about 5 months. Whoa! can you imagine that?! Fortunately, my Myeloma hates Dex steroids, so my numbers came down fast back then. Hoping for a similar reaction now.

Helloooo 40mg per week now!

So not the news I wanted hear at my last Dr appointment:
Booooo on you Myeloma. I know I say it over and over again ad nauseum, but I really thought I would be “just fine” and Myeloma would stay out of my life for a long time, or I would get a lot of mileage out of each type of medication I was on. Guess I was spoiled by the on-going success I had with Revlimid. The combination of  Dex and Rev really brought my numbers down during initial treatment January – June 2010 and my subsequent (post Stem Cell Transplant) Rev maintenance for 18 months. When I came out of remission summer 2013, Revlimid again to the rescue. We started with Rev 5mg for about 6 months, then upped to 10mg for about 9 months, then alternated 10mg with 15mg until we switched to Kyprolis November 2015.

Thinking about this, I had many many years of roller-coaster success with Revlimd. No doubt Rev challenged me like none other! Oh boy did Rev challenge me… and gave me GI reactions that were horrendous and hilarious all at once- (see my previous posts chronicling my many ridiculous GI “close calls” and “near disasters”)! So I really thought I would have “years” of similar success with Kyprolis. Truly I am surprised my body is burning through it’s effectiveness so fast, but actually, I shouldn’t be surprised. This is Myeloma’s (incurable) reality. Crazy how powerful cancer cells are.

Here’s my numbers reality from my most recent labs:
Note how my IgA jumped 570 points in just a month. I’m 5x the high end of normal now. Booooo!! Haven’t seen this level since a few months into initial treatment in 2010. Yes, it’s a wake up call to me…
Similarly, my M Protein jumped .67 points in one month. Since zero (0) is normal, and I am now in the 2’s, that’s significant. Haven’t been there since early 2010, right after diagnosis. Yes, all this is a wake up call…

I’m IgA Myeloma type, so we follow my IgA and M Protein for my status:

(Normal IgA = 70 – 400, Normal IgG = 700 – 1600, Normal IgM = 40 – 230)


Date                      IgA        IgG         IgM 
8/20/15                1530       258         < 18
9/13/15                1770       268         < 18
10/18/15              1890
      240         < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:
11/18/15              1440
       233         < 18
12/2/15                 862
        230         < 18
12/30/15               482
        262         < 18
1/18/16                 426
        228         < 18
1/27/16                 432
        221         < 18
2/10/16                 551
        227         < 18
2/28/16                 635
        226         < 18
3/22/16                 533         242         < 17
4/17/16                 717         251         < 17

5/15/16                 808         232         < 17
6/23/16               1140         267         < 17
7/21/16               1180         247         < 17
8/17/16               1540         238         < 17
9/15/16               2110         212         < 19
Up it went…way up :(

M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0 … Zero


July = 1.26
Aug = 1.01
Sept= 1.37
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 That’s a BIG upward Trend in just one month!
June = 1.06
July =  1.01 
Aug =  1.58
Sept = 2.19
Up again… way up :(

The new plan: Doubling Dexamethasone
Here I goooo. Here come’s the “bi polar”, waaaaay up high for 2 days, then the harsh crash down for 3 to 4 days. It’s such a crazy way to live, and I will NEVER ever get used to it. I like steady and mellow, not super highs and super lows, with all kinds of annoying physiological side effects: Nausea, diarrhea, swelling, headaches, extreme fatigue and exhaustion, dizziness, metal mouth, extreme thirst, body aches, neuropathy, sleeplessness- to too sleepy, and just the overall yucky yuck feelings. It’s like having the flu for 3-4 days EVERY FRIKN WEEK OF YOUR LIFE.  And should I mention the crazy Psychological effects… where I am full of love, hope, humor and non stop conversation for 48 hours, then boom, the crash, and I want to scream out my frustration and “anger” at my situation and “punch” anyone that pushes my buttons! But I should shut up, as so many Myeloma patients have it much worse than me.. Counting my blessings always!

 
Aren’t we cute! 
Crazy how I can look ok on the outside,
and be such a sickie on the inside…

Yes, I’ve never really fully wrapped my head around “being a cancer patient”. It just doesn’t fit my personality. On “good days”, I try doing a fun event. On “crash days”… well you know where I am. I just feel so yucky ucky. But I still FORCE myself to do things no matter what, when energy and my GI allows me, as I realize more and more.. I have to LIVE LIFE EVERYDAY TO “MY” FULLEST.

So a while ago, I wrote a spontaneous (short lol) list of some of the ridiculous things I do, that a cancer patient really shouldn’t do. But then again, I read blogs and articles of my peers, and they’re out bouncing around too, trying to make the most of the situation and “the timeline” we don’t know. My life and activities seem mild compared to so many of my Myeloma peers!

Here’s my list of Funny Things I Do (and probably shouldn’t do) as a Cancer Patient:

Take “care of” our 19yr old cat in Diapers. Yes I glove up!
Held my chickens, and wound up with a Badly Infected Finger (see below)!
Raking horse poop is my exercise-
But I wonder if breathing horse corral dust is smart?
Breathing horse Fly Spray (maybe that gave me Myeloma?)
Remember my rescued Sparrows, changing their cages often.
Changing our Box Turtle’s water (yes I wash thoroughly always!)
Cat. Litter. Boxes. We have 3 (exclusively indoor) rescued kitties. Window open, hold breath!
3 (rescued) Dogs. And now “grandparents” to our daughter’s new shelter doggie Nala.
1 Betta Fish. I change the water frequently. Yes I wash thoroughly!
Drive my vintage VW Bug.. Oh those 1970’s exhaust fumes… fueling Myeloma??
Ranch chores I shouldn’t do. Ouch. Shouldn’t have done “that”..ouch!
I try to be normal and plan events… but I’m sooo fatigued.
Cancel is my middle name now.
Still say YES to things as if I was well, then have to cancel.
Taking care of everyone else. Yes always Counselor Julie!
Tired, tired, tired, but I don’t nap or rest much. Even on awful crash days.
I push myself too much, everyday, in every aspect..
And of course being Mom and Wife.. that role will happily never end!
And that’s just a sample of my busy ridiculousness!

So I wound up with a weird cut on my right hand ring finger:
Not sure how I did it. From the animals or plants or something that cut my cuticle area. It became inflamed and ouchy, but I thought it would “just go away”. I always healed on my own. It got worse. It didn’t heal. It had puss and hurt. I wash my hands thousands a times a day. Thought that would cure it. I sprayed it with alcohol zillions of times a day. But I went on with all my animal chores and animal fun. I can’t not take care of our zoo! I wear gloves for animal chores… well most of the time.. Cut it again. Hit it again. Scratched it again. More and new cooties invaded.. Have no idea why that area became such an impact point for me. Must be because I am right hand dominant. I held one of our new chickens. Her foot slipped and of course, her nail went right into that spot. Right there! Cut it again. Tore it. Ouch! It got redder and more inflamed. It hurt. I tried to squeeze the pus out. It seemed like it wanted to heal. It really looked gross. Oh, it will be better tomorrow I convinced myself. Wasn’t really healing. Tried Hydrogen Peroxide. That seemed to help a bit. Fizzled and cooked it lol. Everyone said to have it checked and get on antibiotics. I thought I would heal on my own. I always did. Ooopps… that was when I had a “normal” immune system, stupid! So I showed it to my Dr at my last appointment… You know, the appointment where I also got bad Myeloma news. I almost forgot to show her. She said, “ooohhh, that looks bad, let’s get you on antibiotics!… any allergies?” … “Yes, all the Penicillin types and Sulfa types” I replied, as she checked my chart and confirmed. Hello Doxycycline pills for a week. Nope, make that 2 weeks.. my chemo pharmacist confirmed today, when I was in the chemo lab. I know, I’m so stubborn and in such denial of my critical health situation. I just think it’s all going to go away, I’ll get back to my old normal, and my immune system will kick in. Ha! How do you spell STUPID? Me!  Here’s the pictures. It’s like there’s a little hole in my nail from the infection eating away.. I know.. STUPID!

This was after several weeks of trying to heal on my own-
Before antibiotics
Today, much better, right!
Thank you Doxycycline…
Or was it my immune system (lol)
Ok, this post wound up longer than I’d planned. I have another story I will tell next time about my Dental visit that wasn’t, due to my compromised immune system. Oh, did I mention, my WBCs, RBCs, ANC, etc, are all well below normal. So what’s new right? Not Neutropenic yet, and hope to not be… altho, me and Neupogen got along just dandy back in 2010!

Thanks for checking in and reading my crazy tale. If you’re a Myeloma patient, I hope my stories inspire you and don’t worry you too much. As “bad” as I’m doing, I’m “relatively ok” and super proud that I’m nearing my 7 year diagnosis/survival anniversary!! Whoo Hoo! 7 years in December!
If you’re one of my “healthy” friends, colleagues, family.. stay that way please, and enjoy my stories and rants.

Lastly, here are some great reads for anyone, cancer patient or not. I really enjoy the posts on The Myeloma Crowd, The Mighty, The Myeloma Beacon, The MMRF, The IMF and all the others I have linked to the right here and below my blog posts. Here are some individually linked articles too:

http://www.myelomacrowd.org/myeloma-101-dex/

http://www.myelomacrowd.org/myeloma-101-more-on-protease-inhibitors-velcade-kyprolis-ninlaro-how-they-help-combat-myeloma/

http://www.myelomacrowd.org/phase-3-studies-show-kyprolis-carfilzomib-extends-progression-free-survival-relapsedrefractory-myeloma/

https://www.facebook.com/ChronicIllnessOnThemighty/

https://themighty.com/2016/08/what-its-like-wearing-a-surgical-mask-in-public/

https://themighty.com/2016/08/what-i-didnt-know-would-happen-when-i-became-chronically-ill/

https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/

All these groups have wonderful Facebook groups and posts too! Thank goodness there is so much wonderful information out there! Not to mention all the research and new meds in the pipeline for us!

Until next time…

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