Mystery Status!

4.27.17

Hello everyone-

For the first time in a long time, I don't have any dramatic news to report, as I'm waiting to receive my dramatic news! See, this was my very first week without Darzalez! Protocol for Darza is weekly infusions for weeks 1-8, then beginning with week 9, we get a break and begin infusions every other week. So who knows if myeloma is still being pummeled, or this treatment break may be fueling myeloma's power? I have no idea, as I was not "required" to do my regular weekly labs, since I had Tuesday off from Darza. Doing weekly labs has become like a "security blanket" for me. I really look forward to knowing what story my blood will reveal weekly...

But alas, I'm not chemo free, or on a full treatment break, as I began my current 21 day cycle of Pomalyst, a week ago. But with my looooow CBC's, we opted this cycle to alternate Pom 2mg with 3mg. So again, it's a wait and see how this reduced potency affects myeloma's powers. Additionally, since my myeloma markers from earlier in the month were so impressive, we've downsized Dex from 40mg per week to 20mg per week, with the option of 4mg on a day or two following Darza, if my side effects become overbearing. But I must confess, I haven't taken my friend Dex yet this week, as I packed a few appointments and events in this week, and couldn't figure out how to do these things, knowing the Dex crash would hit in the middle of my plans. I'm laughing as I write this, as it all seems so surreal and absurd!

Seriously, how crazy is it, living day to day, week to week, month to month, etc, having little control over what's happening to me with side effects, and not knowing if cancer is revving up, staying the same, or still running scared from treatment.  If I could, I would have blood tests weekly for the rest of my life, as that's really the only way I know what's happening internally with me. There are times when I feel ok, and think I am doing well, and think my status is stronger, only to find out, that's not the case. And the reverse, there are times when I feel lousy and think I must be headed in the wrong direction, and I find out that I am actually doing ok. No doubt myeloma, you keep me on my toes, with no room to relax. 

Tomorrow is the annual SCT - BMT reunion at City of Hope, where I had my SCT July 2010. I'm coming up on my 7 year SCT birthday-anniversary. Wow! And this event is huge. Hundreds, but looks like thousands, of people attend. It's a pretty big media event too. And our amazing doctors, nurses, hospital staff etc also come, to celebrate with all the patients. They give us big buttons with our survival months or years noted, a Tee shirt commemorating the event, and host a huge luncheon with speakers and entertainment. Very cool event. Couldn't be on a Dex crash for that, right!

 Here I am at my VERY FIRST 

SCT Reunion, April 2011

Look at that crazy hair growing back
after my October 2010 buzz!

Finally, adding to the list of unknowns, and compounding my "Mystery Status" is the outcome of my long overdue Skeletal Survey - Bone Scan that I FINALLY did this past Tuesday. So I took advantage of my little Darza vacay Tuesday,  and I went for the  bone xray scan. Yes long overdue, due to me. My Dr had scheduled me for that way back in December, but with not feeling well from crazy side effects of escalating myeloma (before Darza's success), I hadn't felt like doing it. I know, geeezzz, not a huge deal, but actually it was, as myeloma's chronic fatigue can be disabling. And I was having side effects from Velcade, higher dose Pomalyst and high dose Dex, etc... Anyway, I did the scan on Tuesday, so the waiting game begins. Will the scan show solid healthy bones, or will I be thrown another curve with bone lesions? Plasmacytomas, I believe is the official term.

My next Darza infusion is May 2, so I'll do labs on May 1. Whew! Status check coming soon! But my next Dr appointment isn't until May 16, to discuss EVERYTHING, and find out how I'm doing with this new protocol of a week's vacay from Darza, and to find out the results of my scan. You think I can wait that long for the results? Nope, you guessed right. I'll be pestering my nurse on May 2 to consult with my Dr in advance :)) I let you know, when I know, when all these myeloma Mysteries are solved...

No matter how ridiculous my situation is

Nature always reminds me how fortunate I am 

To Be Alive!

Hello perfect little ladybug!

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

Hello Neupogen/Zarxio- Let's Pump Up This Immune System, plus Good News Stats

4.17.17
(Updated below!)

Hello everyone, and thank you for reading and following my crazy adventures. I have a Dr appointment 4.18.17, so I will update you with all my recent stats tomorrow, and tell you about my crashed immune system and getting Zarxio for 3 days in a row this past week. Thanks for checking in, and see you tomorrow with numbers!

4.18.17 UPDATE!! NEW NEWS!!

Hello again everyone- been a busy last couple of days. As I've written before, I often think I won't have much to say from post to post, but sheesh am I wrong about that. Seems like so much happens in my MyelomaVille life in just 10 days, between my "On The 7's" posts. Here's what's been going on:

My WBC (White Blood Count) crashed to 1.7 (Normal range = 4 -11) on April 10. Most likely a result of my 3 week standard course of Pomalyst. Unfortunately, this pill form chemo/immunotherapy wreaks havoc on my fragile immune system, so my Dr put me on 3 shots of Neupogen/Zarxio last week. Yippee, as I do just fine on these, as I am so short on WBCs (White Blood Cells), I don't have the "crowding" and painful bone pain many report when on "granulocyte colony-stimulating factor (G-CSF), filgrastim". Fortunately, this brought my WBCs up to a whopping 2.0 and then 2.8 (Normal range = 4 -11), from yesterday's labs. My Dr was very concerned that my ANC (Neutrophils) had dipped to Neutropenic status, (I think she said .99, but I didn't see that on my lab report), so that was another reason she offered me the Zarxio shots. I am now a "whopping" 1.28 (Normal range 1.80-7.70). When I say "whopping", I am of course being sarcastic, as I am sadly very Immune Compromised, and try to live as "Bubble Girl" when I can lol. So that's the "Bad News".
READY FOR THE GOOD NEWS?!

 My chemo buddy Josephine-Josie and I

entertaining ourselves, the lab staff and guests with our antics.

Can you imagine being on chemo, bounced up by steroids,

and slammed down by Benadryl?! Pretty funny combination that causes

hyper-ness and sleepiness all at the same time lol

And now the GOOD NEWS:

THANK YOU Darzalex, with Pomalyst, and Dexamethasone, you are pummeling Myeloma!

Seriously! 

From a high of 4130 to the current 527

Still abnormal, but Wow!

Even my IgG is coming up ^

My "sorority" stats are good too ^

Although I am still "Abnormal" (lol, yes in many ways), 

my M-Protein at recent labs "Is Not Detected"!

Previous M-Protein spike was as high as 3.6 in February!
and now... wow, just wow, 
Not even on the scoreboard ^

 

 This test and result is new to me

Will have research this one ^

 Current CBCs

A mixed bag, but not too shabby.

Now this one I will have to research too, 

as I wasn't wanting to join the IgG Kappa sorority.

I remember reading how Darzalex affects IgG

and I was a bit concerned about this, as I'm IgA myeloma...

I previously found a reference to it here

Here I am checking in today, bright and early (for me)

at 8:50am for my Dr appointment and 6-7 hour treatment.

Today is infusion #8

Can you believe that!

How time flies when your weeks are taken up by

cancer, chemo and side effects-

Thank you Dex steroids for propping me up
and making me feel ok once a week!

 The amazing check-in ladies

Arcie and Robin.

They've been the smiling faces, 

wonderfully caring ladies, greeting me 

for 7 years now. Just loooove them!

And here's my new Darzalex schedule-

protocol is weekly, for weeks 1-8, 

then reduces to every other week for weeks 9-24,

then reduces to monthly until "disease progression" or

I become "refractory" to it and have to hunt for another treatment.

My life!

Yes, this is my life. I have cancer. A cancer called Myeloma. A cancer I knew nothing about until December 30, 2009. A cancer that has taken over my personal life, stolen my career, limited me in ways that are so profound, I can't even comprehend it. I am still in disbelief and denial. Even on treatment days, when I check in, consult with my oncologist, and check into the chemo lab for 6-7 hours, I still feel like this an out of body experience, and I am just "posing as a cancer" patient, an "imposter" going through the motions. But when I'm "invited" to the chemo chair or chemo bed, my IV needle inserted, medicine bags with my name on it hung, drip drip goes the infusion into my veins... reality of my status does slam me. When I chit chat with fellow patients and we exchange our respective "horror stories", reality does hit me. When I "coach" new members of this "unwanted club", and unwittingly sound so knowledgeable, reality does hit me. When I mention I have been doing this for 7 years, and will continue doing this for my "forever", reality does hit me. Other's shock and awe of my status, of my continuous treatments, of my incurable cancer diagnosis status, then the impact of my situation hits me.

When I view and discuss my Labs, reality hits me. When I consult with my Doctors and Chemo-Pharmacists, and they are very concerned and serious, reality does hit me. When the term "high risk" references my status, reality hits me.When my myeloma morphs, mutates and outsmarts my treatments, and my cancer stats escalate, reality does hit me and hits me hard, and I get scared. But today, I am encouraged and have new hope for additional successful months with Darza, Pom and Dex pummeling this monster within me. Myeloma patients just hope and pray our treatments continue successfully, buying precious time..., hoping the amazing medical scientists and researchers continue to develop additional meds to treat this stealthy, sneaky cancer, that will always outsmart and return with a vengeance. It's just a matter of time...

It's a strange and scary feeling, that my life is entirely in the hands of others, that my life depends on highly complex scientific molecular and cellular knowledge that I barely understand. It's overwhelming that my life entirely depends on targeted chemicals coursing through my veins, joined by pills cunningly circulating in my blood stream, their mission to annihilate cancer cells, and to keep me alive. Imagine wondering if this internal chemical warfare will last months, or a month. Imagine wondering, always wondering, treatment to treatment, blood test to blood test, if my personal "Team Pummel Myeloma" can outsmart and out chemical myeloma. Imagine living day to day, wondering... wondering when the myeloma roller coaster will jerk me in that "other direction".

Yet, I remain hopeful always, as I Want To Live... for a long time! 

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

Thank You Medical Science, and Brilliant Researchers! You're Saving My Life!

4.7.17
Hello to Hope and Successful Treatments!

If you've checked in here, between my "On the 7's Posts", you're up to date with all my good, and crazy news. I don't have any new dramatic news since my April 1st, "NO APRIL FOOLS JOKE" post of amazing treatment success and crazy side effects. Truly, I am still in shock how fast Darzalex with Pomalyst and Dex steroids have brought my IgA and M Protein down. I am so very grateful to all the brilliant medical scientists and researchers working on medications to treat myeloma and I am so indebted to all these brilliant minds that work so diligently to keep us myeloma patients alive!
I do however, temper my excitement with myeloma's reality, that this treatment will not last "forever", but I am thrilled my body and this "monoclonal antibody" is able to outsmart myeloma, at least for now.

Here's my incredible results again:

 Yes, your eyes do not deceive you!

Of course, my levels are still "Abnormal", as my test result sheets scream at me all the time. But seriously, from "death's doorstep" Nov, Dec, Jan, Feb... this is incredible beyond words. My Doctors do remind me of my "high risk" status, as I tend to respond well initially, then boom, myeloma quickly outsmarts, mutates and wins again. But, today, this week, this month, I am beyond grateful for my status.

I won't "complain" about all my crazy side effects either, as I have fully blabbed about those in my previous posts. Nothing has changed with that, and I "cowgirl up" and suffer through my pain. Darza infusion #6 was Tuesday, so I felt ok Tuesday and Wednesday. Thursdays I wake up dizzy, ditzy, groggy, mentally fuzzy, puffy, swollen and achy. And that continues and worsens throughout the day, night. Fridays (today), I wake up even more dizzy, ditzy, blurry, groggy, fuzzy and the nasty fever-like nerve pain begins. But I keep reminding myself of how well I am doing on a molecular, cellular level and I push through. I am very grateful to be here to tell you my story.

Lost another dear friend and colleague~

Here we are late last year, 

battling together at the Chemo Lab. 

Armida lost her battle this past week, 

and I am so sad for her and her family. 

Stupid, worthless cancer... 

But life moves forward, and I take one day at a time, doing what I can on the few "good days" I have. I've needed to take one of our kitties to the Vet, but just haven't had the helium to do so, but her URI became concerning, so I was able to get an appointment on Wednesday, knowing my "crash clock" was ticking. Look what someone had brought into the Vet's office. A box of little baby opossums, who's momma was hit by a car. Thankfully, still many loving and compassionate people in the world. The babies are being taken care by a wildlife rescue. 

 Awww baby opossum

I know, you're worried about me handling wild animals and getting cooties, germs and diseases. Well by now, you know I worry much more about human contaminates, not animals, as they are so clean! Humans... not so much lol. Yes, I scrubbed up, and washed well after handling the little cuties! 

And yes, I still "drag" myself out to the arena, every day I can, for just a bit of exercise, picking up "horse apples". It's really the only exercise I get, except for walking to and from my car, to my medical appointments, and on good days, I even take the stairs! I try to move around each day, no matter how awful I feel. I am "tormented" by the Spring beauty around me, wishing I could run through the fields of Poppies in bloom, or hike the horse trails behind me, or just take a walk down the road like I used to... but I accept my reality, and accept that "Less is More", and do what I can, when I can.

I laugh at the ironies of my life. I look to the heavens, and quietly yell at the "universe" for my predicament. I marvel at what I have been through since December 30, 2009, and take deep breaths of appreciation for the life I do have. I am here, I will fight to stay alive, and I bear with that which is tossed my way.
I am not afraid of dying... I am afraid of not living...

Mr Boots says

Thank you for reading and caring :))

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

NO April Fools Joke... This Is For Real!

4.1.17

"April Fools' Day (sometimes called All Fools' Day) is celebrated every year on April 1 by playing practical jokes and spreading hoaxes. The jokes and their victims are called April fools. People playing April Fool jokes expose their prank by shouting "April Fools"! Some newspapers, magazines, and other published media report fake stories, which are usually explained the next day or below the news section in small letters. Although popular since the 19th century, the day is not a public holiday in any country." (From Wikipedia)

So with a loud cheer and a huge smile on my face, take a look at these results, and THIS IS NO APRIL FOOLS JOKE! I'm still in shock! :))

IGA!!!

M PROTEIN!!!

LIGHT CHAINS!!!

So even though I have been really challenged with crazy side effects, I would say that it's all worth it, right! This week began with extreme fatigue and surprise diarrhea, but my friend Dex steroids quickly took care of that on Tuesday into Wednesday. I crashed late Wed and into Thursday, Friday. I feel I little better today, but "ache" like I have a mini-fever or sunburn, the diarrhea is starting lol, and I have extreme fatigue, but overall, it's better than it's been all of March!

I have completed 5 Darzalex infusions so far, beginning Feb 28.
First infusion was just Darza and Dex.
Second and Third Darza infusions we tried with Velcade subQ shots (and Dex), but the crazy "pseudo fever" skin pain was unbearable, so I quit that.
Fourth and Fifth Darza infusions were with Pomalyst at 3mg (with Dex).
Fortunately, the ouchy skin side effects lessened just a bit just this week. Pom causes extreme fatigue and no helium, but this cocktail combo is better than what I experienced with the Velcade Darza combo. But now that I am several weeks into Darza, I do believe the ouchy fever-like skin pain is Darza, so perhaps Velcade may just be my friend down the road.

Needless to say, I am beyond thrilled with my current Myeloma stats. Pretty incredible right?!! I always seemed to respond well to the meds and treatments, so when my numbers began to soar, I was truly concerned. I know eventually Myeloma will outsmart Darza and Pom, but I sure hope I get many many months of treatment success. To be honest, at the end of 2016, beginning of 2017, I was getting scared. I wondered if my skyrocketing IgA and MProtein meant the "beginning of the end"... It's a crazy way to live, knowing that if your body does not respond to treatment... that's it...

Thank you magical bag of Darza

coursing thru my veins.

outsmarting and killing those evil myeloma cells!

Here I am at 20ish

I will always wonder 

when Myeloma invaded...

Read this! ^

Thank you for reading, commenting and caring! It means a lot to me that you care and appreciate my posts! Let me know how you are too!

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