Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Monday, April 17, 2017

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

(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".

 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!

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

Friday, April 7, 2017

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

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

Saturday, April 1, 2017

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


"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! :))




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 
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

Monday, March 27, 2017

D is for... too much toDay


And just when we think we can predict...
Ha Ha laughs life...

Got up early, took some Dex steroids, as that's what I have done to begin pre-meding for Tuesday's Darza infusions. I haven't had any relief all week from the ouchy fever-feeling nerve pain. I just feel awful. My thinking: Dex to the rescue! No I haven't been actually "sick", thank goodness! My body just feels sick, like when one has a fever. Ouchy skin. And the fatigue. Ugh the fatigue. I just feel sick all the time now, but I am not sick. Not flu sick. Not stomach flu sick. Not sinus-cold sick. Just tired, fatigued, ouchy fever sick, WITHOUT the fever. Yippee Dex steroids to the rescue.

Got up, took 4 little pills with a Vanilla Ensure, and water, and was going to go back to sleep for an hour. I knew I didn't have much time this morning, as I was due downtown at 11:00 for my SCT Dr appointment.  I just wanted the roids to kick in, and make my achyness disappear. And then it happened. My stomach started rumbling like it hasn't rumbled in a long long time. Hmmm, what's this feeling I mused. Pomalyst, are you becoming my Revlimid? Are we going to have GI adventures again? Will I be prevented from going places due to crazy unpredictable diarrhea? Deja Vu 2013, 2014, 2015? No, all is well, false alarm. I still have a bit of time to "relax" before getting up and leaving.

Oh, yea... surprise, surprise: Hello GI issues again. Hello diarrhea that prevents me from leaving the house, getting on the freeway and getting to my Dr appointment. Ha Ha, laughs life: "You'll never be able to predict much of anything ever again", laughs life at me, while I'm in the bathroom, wondering what the heck. Later, I call my Dr's office and let them know my situation. I'm offered a phone consult appointment, which I was very happy to accept. I really do have the best care!

Dr S and I discussed my labs, new treatments, new meds, new ouchy side effects, etc. We discussed "quality of life" issues. We discussed my options. We discussed Velcade vs Pomalyst with Darzalex, Dex. Who knows which is causing what. Perhaps, with all the side effects, Dr S suggests: "try stretching out Dex AFTER the Darza infusions"... "Maybe not take it day before infusions, but utilize the 40mg dose over more days, since the Dex seems to really help alleviate these new"... awful, painful, debilitating side effects... we discuss back and forth. Done Deal! I'll talk to my chemo lab pharmacists tomorrow and my local Dr.
Dex took it's sweet time kicking in, and still really hasn't given me the "kick" I'm used to, but the awful pain has now subsided. I think Dex will be the Darza side effect minimizer. I was slow to do much of anything today, due to incredible fatigue. I had to "force" myself off the couch and outside to move a bit, and I finally ate a baked potato and then left late for the lab for my blood tests. Everything is an effort lately. Not the Julie I know... This has got to change... I'm not an inside couch lounger.
When I have these lab results I will post them (look for an update April 1). But thankfully, it does look like Darza is effective at wrapping it's self cellularly into and onto myeloma, slamming myeloma's power! I have committed to "suffering", if Darza is my new Elixir. I'll figure out a way to "med up", "drug up", meditate, "ignore it", etc, and make this work. Myeloma, you have ruined my life, but I am forever grateful for this life I have...

Not long after my Dr phone consult, I found out another one of my myeloma friends passed away today. So shocking. I had met Lisa and her husband late last year at the chemo lab. She was somewhat newly diagnosed. June or July 2016, I think. I told them my story and my successes. I gave them hope and tips. She had many complications, had been in and out of the hospital, had to do dialysis, but they were very optimistic and looking forward to getting to and beyond the SCT process. She had many success milestones. She made it to City of Hope for her SCT. Today was 11 days after her SCT infusion. I don't know what happened. But I do know my heart is broken for her family. For her husband and young adult children. So incredibly sad. I just don't understand. I will never understand "Why Bad Things Happen to Good People"... Why Myeloma, Why?

D is for Darzalex side effect surprises
D is for Dex steroids to the rescue
D is for Done Deal, I'll Do it
D is for Deja Vu Diarrhea
D is for Dang, really, here we go again
D is for Dr appointment missed
D is for Dizzy and Ditzy
D is for Dex steroids Bipolar life 
D is for Done with all this insanity
D is for the tragic Death of a myeloma friend toDay

Look for my new lab tests update on April 1. No April's fools joke coming :))

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

Saturday, March 25, 2017

Thanks Darza- 4 days later... I still feel Yucky, and You're Sabotaging my Party


Dear Darzalex,

Thank you for improving my myeloma status, and pummeling those invasive no-good cells, but what's going on here?! Each day since Infusion-Day-Tuesday, I have felt yuckier and yuckier... I feel "flu-ish", achy, so extremely fatigued, tired, headachy, dizzy, blurry and so incredibly ouchy, without relief or a break. I thought Velcade was "the" culprit, and kicked that treatment outta my life last week.

But Darza, perhaps Velcade is only partially responsible for my "misery", maybe exacerbating your side effects? Maybe the ouchy nerve pain is really you Darza, afterall? Maybe you are the cause of all these yucky side effects? Guess I underestimated your powers. I don't have the extreme debilitating, burning nerve pain from earlier in the month, but these current super ouchy-achy-flu-like symptoms are just doing me in. Is this you Darza? Or Velcade's delayed 2nd life? Or is this you Pomalyst, after just a few pills? I know the power of killing myeloma is in the multiple "agents" combined together, but this "torture" supports my previous rants about being on one chemo/immunotherapy at a time, so I can isolate which side effects are from what. I meet with my SCT Dr on Monday March 27, so we'll see what his take is on all of this is...
C'mon myeloma, can't you cut me a break... it's my son's birthday today.

Happy Happy Birthday to my amazing son Scott! 

Throwback to better times...


What are the possible side effects of DARZALEX®?
DARZALEX® may cause serious reactions, including:
  • Infusion reactions. Infusion reactions are common with DARZALEX® and can be severe. Your healthcare provider may temporarily stop your infusion or completely stop treatment with DARZALEX® if you have infusion reactions. Tell your healthcare provider right away if you get any of the following symptoms:
    • shortness of breath or trouble breathing
    • dizziness or lightheadedness (hypotension)
    • cough
    • wheezing
    • throat tightness
    • runny or stuffy nose
    • headache
    • itching
    • nausea
    • vomiting
    • chills
    • fever
  • Changes in blood tests. DARZALEX® can affect the results of blood tests to match your blood type. These changes can last for up to 6 months after your final dose of DARZALEX®. Your healthcare provider will do blood tests to match your blood type before you start treatment with DARZALEX®. Tell all of your healthcare providers that you are being treated with DARZALEX® before receiving blood transfusions.
  • Decreases in blood cell counts. DARZALEX® can decrease white blood cell counts which help fight infections and blood cells called platelets which help to clot blood. Tell your healthcare provider if you develop fever or have signs of bruising or bleeding.
  • tiredness
  • nausea
  • diarrhea
  • shortness of breath
  • fever
  • cough
  • muscle spasms
  • back pain
  • cold-like symptoms (upper respiratory infection)
  • nerve damage causing tingling, numbness or pain
  • swollen hands, ankles or feet
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of DARZALEX®. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.


Or is it you POMALYST?

POMALYST can cause serious side effects, including:

  • Low white blood cells (neutropenia), low platelets (thrombocytopenia), and low red blood cells (anemia) are common with POMALYST, but can also be serious. You may need a blood transfusion or certain medicines if your blood counts drop too low. Your blood counts should be checked by your healthcare provider (HCP) weekly for the first 8 weeks of treatment and monthly after that.
  • Severe liver problems, including liver failure and death. Your HCP should do blood tests to check your liver function during your treatment with POMALYST. Tell your HCP right away if you develop any of the following symptoms:
    • Yellowing of your skin or the white parts of your eyes (jaundice)
    • Dark or brown (tea-colored) urine
    • Pain on the upper right side of your stomach area (abdomen)
    • Bleeding or bruising more easily than normal
    • Feeling very tired
  • Severe allergic and skin reactions. Call your HCP if you have any symptoms of an allergic reaction, including: swelling of your lips, mouth, tongue, or throat; trouble breathing; or skin reaction.
  • Dizziness and confusion. Avoid taking other medicines that may cause dizziness and confusion during treatment with POMALYST. Avoid situations that require you to be alert until you know how POMALYST affects you.
  • Nerve damage. Stop taking POMALYST and call your HCP if you develop numbness, tingling, pain, or a burning sensation in your hands, legs, or feet.
  • New cancers (malignancies). New cancers, including certain blood cancers (acute myelogeneous leukemia or AML) have been seen in people who received POMALYST. Talk with your HCP about your risk.
  • Tumor Lysis Syndrome (TLS). TLS is caused by the fast breakdown of cancer cells. TLS can cause kidney failure and the need for dialysis treatment, abnormal heart rhythm, seizure, and sometimes death. Your healthcare provider may do blood tests to check you for TLS.
  • The most common side effects of POMALYST include tiredness, weakness, constipation, nausea, diarrhea, shortness of breath, upper respiratory tract infection, back pain, and fever.
  • These are not all the possible side effects of POMALYST. Your HCP may tell you to stop taking POMALYST if you develop certain serious side effects during treatment. Call your HCP for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

What other important information should I know?

  • Blood clots in your arteries, veins, and lungs, heart attack, and stroke can happen if you take POMALYST. Most people who take POMALYST will also take a blood thinner medicine to help prevent blood clots.
Before taking POMALYST, tell your healthcare provider:
  • If you have had a blood clot in the past
  • If you have high blood pressure, smoke, or if you have been told you have a high level of fat in your blood (hyperlipidemia)
  • About all the medicines you take. Certain other medicines can also increase your risk for blood clots
Call your healthcare provider or get medical help right away if you get any of the following during treatment with POMALYST:
  • Signs or symptoms of a blood clot in the lung, arm, or leg may include: shortness of breath, chest pain, or arm or leg swelling
  • Signs or symptoms of a heart attack may include: chest pain that may spread to the arms, neck, jaw, back, or stomach area (abdomen), feeling sweaty, shortness of breath, feeling sick or vomiting
  • Signs or symptoms of stroke may include: sudden numbness or weakness, especially on one side of the body, severe headache or confusion, or problems with vision, speech, or balance


I just can't tell if I am getting better or worse. These side effects are really throwing me a curve. And to think I "complained" for years about the "volcanic, surprise" diarrhea from Revlimid. What's that ole saying... "be careful what you wish for"!

Happy Birthday to my amazing son!
We were just so cute back then! 

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

Wednesday, March 22, 2017

Good News! Darza Dominates!


Looks like Darzalex (with Dex, Velcade) is doing it's job and pummeling myeloma!
(Mayo Clinic Recommendations for Myeloma Therapy at Relapse)
Just saw my IgA and M Protein levels! 

M Protein was 3.60
Now: 1.35
Normal range = Zero
IgA was 3750
Now: 1770
Normal range = 70-400

So here's the quick story: 
Tuesday March 21 was Darzalex infusion #4.
I let my Dr and Chemo Pharmacist know I just couldn't do the Velcade shots anymore, if Velcade was the culprit causing me the horrific "nerve pain" I was attacked by this month. It's a full body super ouchy painful feverish feeling, like knives stabbing me, nails scraping my skin, pain like a very high fever, but without a fever. Went on for days and days and days. So we agreed to nix Velcade and try Pomalyst again, but at the 3mg dose, hoping it won't bring my CBC's to Neutropenic levels again. 

BUT- that ^ conversation ^ was PRIOR to seeing my recently resulted M-Protein and IgA levels! They just came in today. So now that we can see the AMAZING RESULTS... I (think) I would be willing to suffer through Velcade, if Pomalyst doesn't show the same great downward results. But we won't know that for another month, as I'll begin Pom tomorrow. But at least we do know Dex, Darza and Velcade does work for me.
I am just so relieved that these meds and my body are currently stronger than the myeloma cells attacking! Yippeee ... my spirits are renewed and I am back to feeling my positive optimistic, hopeful self again... at least for now...

HAPPY dance song!!!

Click here for an informative Darzalex video with Dr Durie!

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


Friday, March 17, 2017

Forward March Darza, Velcade, Dex

Hello 3.17.17
Here's my story in pictures.

Some days yes, most days no...
I used to be so "strong",
but I find continual "pain" debilitating...

So many more diagnosed every day!
Just met another local to me...
Where are you coming from Myeloma?

Forward March Tuesdays-
Hello 40mg Dex steroids, bag of Darzalex, bag of Benadryl, Velcade shot

These are great when I get tired of swallowing pills-
Helps calm chemo reactions, and so amazing-
I have ZERO environmental/food allergies
since my July 2010 SCT!

5 hour Darzalex infusions-
So far so good, thank you premeds
and a fantastic chemo lab staff for smooth sailing
Jr strength used to work out ok... 
But these days-
I need to be an "Adult" and up the dose 
with Adult strength pills, 
as there's a new side effect in town...

Several weeks ago, Velcade sent me AWFUL, OVERWHELMING NERVE PAIN! 
Different than the typical numbness and tingling from traditional Neuropathy..
Hit me 2nd Velcade Darza infusion- 
Just unbearable pain like I've never experienced
Feels like a PAINFUL skin fever, sunburn or raw skin.
It's a high fever feeling, but without the actual fever. 
It's the flu feeling without the flu.
Burning sensitive ouchy skin, inside and out.
Clothes feel like needles
My bed is like sleeping on nails
So awful, so debilitating :'(( 
Stealing my precious time away, 
Draining my optimism and strength,
Stealing my days away,
Stealing my life away,
Making me question everything... 

Then fortunately,
Whew! Mondays and Tuesdays Dex to the rescue!
I take 40mg per week,
20mg Mon, 20mg Tues
as premeds for Tuesday infusions 
and finally, some overall relief.
It's amazing to feel a bit like my ol self again.
What a crazy, amazing medication...

And on a happier note:
last Tuesday after infusion-
before my crash- 
Alissa brought us this,
Thank you Dex for a day or two of semi normalcy.

Not often though, as I'm back to counting calories-
I'm not going to let 
Dex steroids make me chubby! 

Me on the one good day

I'll take labs soon (when the nerve pain calms down and I can breathe and function). Truly, dealing with this new side effect is overwhelming me. I'm not used to 24 7 pain. I'm not used to feeling so awful, so "sick", for most days a week, every week, every month... Seriously, imagine feeling sick weekly and knowing in advance you will feel sick weekly... so awful. But I endure, as it will be interesting to see how this new cocktail of Darzalex, Velcade and Dexamethasone is attacking myeloma. Trying to tolerate the nerve pain torture, in hopes the meds are pummeling the cancer cells... if not... what's next?? ...
I don't think I can do this...

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

Tuesday, March 7, 2017

Ok Darza Infusion #2...I'm Coming for You

(UPDATED 3.8.17)

Darza, Darza, Darza... I hope we're going to be friends!
Infusion #2 today, Tuesday March 7, 2017
Yep, I survived last week's Daralex's Initial First (2 day) infusion and this first week of post infusion- "let's see what happens", and not too awful side effects :))

(See my previous 2 posts for these initial Darzalex details)

In prep for Darza Infusion #2 today, I took 20mg Dex roids Monday March 6 to begin the pre-med-ing and getting my body ready (or calm lol) for infusions. I then took the second 20mg Dex roids first thing in the morning, before leaving for my Dr appointment and infusion. I find having the Dex in my system in advance, really helps prevent infusion reactions. (I am still on the 40mg of Dex steroids per week, so splitting 20mg + 20mg seems to work really well.)

Darzalex is infused GRADUALLY and SLOWLY the very first time to prevent extreme side effect reactions. I'm still processing how impressed I am with my body's minimal reaction, and I do attribute this to my, and the lab's, pre-med-ing and careful monitoring. Infinite Thank you's to my entire medical team!


So I arrived around 10:30am for my Dr appt with Dr P. We discussed my first Darza experience, my numbers, and noted that my CBC's were up a bit. I attribute this to the 2 days (20mg + 20mg Dex roids lol), as my blood stats seem to increase when I premed with Dex and then take labs. We discussed how well I did with my first Darza infusion, with my "textbook reaction", that was quickly controlled. Not to minimize it in any way, I just had thoroughly prepared and informed myself physically and mentally, so I knew what to expect, and act on immediately, before things got out of hand (see my previous posts for details).

Dr P then let me know she really wants to add Velcade or Pomalyst back in, as research and Darza protocol is all about doing "multiple agents" together... Ya, Ya, I know... but eekkk... I've barely gotten used to this "grueling" allll day infusion, not to mention possible crash side effects, and you all know I am not a fan of adding multiple treatments together until I know which is doing what, and what to expect from each. I know... I'm not the standard chemo patient... but ugh, after 7 years of this, QUALITY OF LIFE is important to me, and my Doctors know this. So back and forth we went, discussing all options. She is really concerned how Pomalyst brought my CBC's to "Neutropenic" status, so we agreed to add Velcade back into the mix. But then she informed me that study and Rx protocol is Velcade adminstered on Darza infusion day and then 2 days later! Whhhaaattt.... noooooooo! Ugh! I don't mind coming back, it's just that I know I will be "crashing bad" on Thursday, and just don't want to get on the freeway, not knowing how bad my symptoms will be, not to mention she and the chemo lab pharmacist let me know the Velcade Rx standard for this cocktail is higher than what I was receiving before. Ugh!! Back and forth we went, and I reluctantly agreed, as I know my IgA and M Protein and other MM stats are ridiculously high now... some back to 2009 diagnosis status! I know they have my best interests here, but I just need some semblance of "normalcy" at least for a few days per week. I'm not looking for a "magical cure" status, as I've always known myeloma is incurable. I just want the meds to give me lower numbers, and "stable disease" status.

So I "reluctantly" agreed to the new treatment plan, and off I went to premed with Benedryl and Tylenol, thinking let's get that Darza juice into me and get to killing those waste of time cancer cells. As I waited for the premeds to settle in, I noticed 2 of my chemo lady pals across the room from me. One with myeloma, one with another cancer. Both such lovely ladies! Zoom, let's go IV stand, time to chit-chat consult, as the myeloma lady was doing Darza also, and was a month ahead of me with her treatments. Long story short, she too was offered the Darza + Velcade (2x per week) + Dex, triplet cocktail. Oh boy, did we talk about that for a while. And talk, and laugh, and exchange stories about side effects, and life, and family, and myeloma's ridiculous life changing limitations! This sweet lady let me know she had made the decision to NOT do the Velcade 2x per week, and only agreed to Velcade 1x per week with the Darza and Dex. The side effects were just too much for her. Oh boy... confirmation of my thoughts. I know, we're all different, our myeloma is different... but dang it... I can only "suffer" so much in the process of treating this monster.

Can you guess what happened next?
Yep, as my Nurse continued to monitor me, increasing my IV flow from 50m/L to 100m/L... she brought over my Velcade shot, hung it on the IV stand for later and asked me about scheduling my 2nd shot for Thursday. Ok, ok, scheduled, I accept, scheduled in the system for Thursday. I'll try to come back... ugh side effects... ugh higher dose... ugh my looming crash... ugh into the unknown again... ugh ugh ugh... Noooooooo! Nope! Not! I thought it, and said it... "I'm not going to do this!" Nope Nope Nope! Sorry studies and protocols, not going to do this yet. Dang it. Let's wait to see how I respond to Darza, ONE Velcade shot and Dex. I just don't like bombarding my system if it may not be necessary. I know, this is not what standard medical practice is. Hit it hard, slam those cells, wrangle in the cancer hard and fast. That's the norm. Nope, Nope, Nope, I like to wait and see. See if lower dose, minimal meds can do the trick. So I shocked my sweet nurse with, "Sorry, please cancel Thursday's 2nd infusion, I'm only going to do the one Velcade shot with the Darza on Tuesdays." Take that myeloma! She was surprised, asked me several times if I was sure, and then cancelled Thursday for me. Yep, even though my Doctors and Pharmacists may "know what's best for me medically", they, fortunately have not experienced those yucky awful crash days us cancer patients do.

I accept the triplet concept. I really do. 3 different agents fighting myeloma's unrelenting mutations. I get it, I really do. So let's get this Velcade shot in. Let's see how my system handles this new cocktail slam. Get er done. IV me up, shoot me up, let's do this. Being a 7 year "myeloma veteran", I have little vanity anymore in the chemo lab. I let my nurse "use me" to demonstrate to another another patient, "how to inject shots in to "belly fat". We all laugh. I talk about what Dex steroids did to my body. I talk about how I am carefully counting calories now. I talk about how I am no longer saying, "F cancer, I'm going to eat whatever I want, whenever I want".. I don't want to be a chubby steroid cancer patient. Ok, some days I do still say "F cancer", and eat a few extra ginger cookies or whatever my after chemo "metal mouth" craves lol. Velcade shot in, humor shared. This is my life.

As my chemo lab pharmacist was leaving for the day, I called out to him and told him my decision about NOT doing Velcade 2x per week and cancelling my Thursday appointment, and he said, "Noooo way Julie, I'm just soooo shocked, so surprised"... "Not"!! ... wink wink!! He knows me too well lol!! Omg so funny!! "Sorry to be so complicated Dr Henry". "I'll sign a "waiver" if need be, that I "changed" the standard protocol for this regimen"... lol, he laughs, "not necessary Julie"... "see you next week".

The rest of my day went ok, chatting with other patients, sharing cancer diagnosis stories, life stories, and the forever feeling of being incredulous that we are in the circumstances we are. Patients came and went, and there I was, hour after hour after hour. Hourly increases of Darza flow from 50m/L to 100m/L to 150m/L to finally 200m/L. So far so good. Body is tolerating Darza fine today! Just tired, but wired. Dex and Benadryl battling it out, inside of me. Tried to dooze as some patients do, but can't. Too many thoughts in my head, too much to think about, too much to process. The lab is clearing out. Only one or two patients left. I still have about an 2 inches left of Darza. The lab closes at 5pm. I feel bad for my nurse. I want her to go home on time. I tell her it's ok to increase the flow. Let's go Darza. It's 5pm. She's squeezing the bag. Just a little left. I'm doing fine. This is surreal. I'm the only one left in the lab. The other nurses leave, my nurse patiently stays and we chit chat. Darza's almost done. It's after 5:10, 5:15. Darza's finally done! Switch bags. Get hydration in those veins. Lights out, everyone is gone. I'm exhausted, but so shocked I did so well. Finally, safe to go. My nurse confirms I am ok. Yes I am ok! Thank you sweet lady for caring as you do, and taking such amazing care of me! We walk out together. I apologize continually for how late things went. For sure next Tuesday's infusion appointment will be earlier, as I don't have a preceding Dr appointment.

I get to my car. I'm a little dizzy, ditzy, woozy. I should have let someone drive me there and back. But just my nature to not impose on anyone. I should. I'm a terminal cancer patient. I'll be doing this drill forever. I keep thinking I won't. I can't accept this. What happened to me. This can't be for real. This status will always be so unreal, surreal to me. I shake my head, trying to process. I drive carefully home. Fortunate for traffic today. Keeps the speed down. Focus Julie, focus. I'm thirsty, but don't want to worry about "not making it home". I'm a little nauseated... or am I hungry. That's right, I only had a vanilla Ensure with my Dex steroids at 7:30am, then some graham crackers with my premeds at the lab, then water, and water with cranberry juice, and one fig bar. Am I hungry or nauseated? Ok, almost home. So much to process, so much to think about. Have I made the right decisions? Am I foolish for not following protocol? Should I be a typical, accepting cancer patient? When am I going to accept the "seriousness" and "aggressiveness" of my diagnosis? Nope, I need to be comfortable. I need to treat my body as I feel comfortable. I know my body. I respect the medical advice. Am I wrong for not treating per protocol? I arrive home. Relieved to be home. it's after 6pm. I used to come from work around this time. How my life has changed. What happened to my life 7+ years ago. When will I wake up from this ridiculous nightmare. 

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

My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!

What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)


Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.