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

Monday, November 18, 2013

Chemical Warfare part 2! Mission = Remission Again

Start running Myeloma!!!
Chemo's coming to gobble you up again!!
So we picked up some of my prescriptions, after my treatment planning appointment Nov 18... I couldn't help but laugh when I tried to organize all these meds in my "pharmacy drawer". There's a lot of meds here again! It's 2010 all over again... but actually I am grateful for the deja vu medication treatment routine, as I now know how to manage the side effects from each one. I take some in the morning and some at night. Some with certain types of foods. Some without food.
Can you guess which I take WHEN?

Frontline attack #1
Fortunately at a low dose to begin with!
This Rx comes from the Kaiser "specialty pharmacy" in San Francisco
They are so wonderful with personal calls, and sending it FedEx next day!
Hello again my friend Revlimid!
We'll be friends for 3 weeks on, 1 week off.
Cost is unbelievable! I just received my new Rx!
(and the 2013 price is even higher than my 2010-2012 (of course!)
Ready for this... $9,283.57 per 21 day cycle! OMG!!!
Interesting article here regarding cost and survival




The magic hot pink pill to prevent allergic reactions and hives from Revlimid
Back in 2010 when they tried higher doses with me I had huge allergic blotches and rashes...
I didn't realize how serious it was at the time

Good ol Aspirin to prevent blood clots
and deep vein Thrombosis from Revlimid

ROID RAGE right here !
I have a love/hate relationship with you Dex!
 5 cute lil pills per dose, but dang they do a number on my system!

Omerprazole to prevent ulcers, acid reflux, etc
These I have to remember to take longer, as the Dex roids have been
wreaking havoc on my GI system 


Antiprotozoal to prevent Pneumonia and other cooties!
It has the consistency and appearance of yellow preschool paint, with a Citrus taste
Quite pricey at over $2500 per Rx


Antiviral to prevent Shingles
I forget if I did this pre and post stem cell transplant in 2010

And I think I will add B-12 and a daily vitamin to this chemo cocktail as I keep getting sick!!! ggggggrrrrrrrrrrrrrrrr

How do I feel overall? Kinda spacey, mentally worn down and a bit sad. Seems like I am sick every week now. (Home sick again now! ugh!) Most of the time, I feel dehydrated, dizzy, nauseated, weak, tired, GI yucky stuff and nasal stuff etc!!!!  Just go away Myeloma!

I really thought I would be "different" and get remission for a long long long time... instead, Myeloma came back fast and from all the studies I read... my clock is ticking faster than I really allowed myself to absorb before. Am I lucky if I have 10 years from diagnosis? 

2009 + 10 = 2019
Tick... Tick... Tick... Tock

8 comments:

  1. Love and prayers coming to you from North Carolina. You will DOMINATE this, Julie!!

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    1. Thank you "lovethebeach"! Do you have a blog? My little blue bug is from N Carolina!! :)

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  2. Sorry to hear you're back in the barrel again....relapse ain't no fun. But big things may be coming at us just around the corner at ASH in a few weeks and clinical trials are advancing to Phase 3 with the monoclonal antibodies so we may just see some game changers over the next 12 to 18 months...hang in there! Good things yet to come! :)

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    Replies
    1. Thank you for the encouraging words Steve! Do you have a blog?

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    2. Nah....haven't started a blog yet, Julie. Have considered it but....finding the time? Have spent most of last 4 years posting at the acor.org MM listerv and at Pat Killingsworth's blog. But I do like to make the rounds to folks who do maintain blogs and add my 'couple of coppers' worth now and then. :)

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  3. Thank you all for your supportive comments, and so sorry to those that have let me know they have difficulty posting here :( I do love and appreciate your feedback, as I never know who's reading my silly ramblings ! I am testing out posting... here goes :)

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  4. Hi Julie! How cool that your little blue bug is from NC!! I don't have a blog - am related to the "multiple myeloma for dummies" crew. Found your blog through them and have been following for quite a while. Keeping you in my prayers. :)

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  5. That is so much!!!! The best thing about this all is how well you know your body and how to use each and every medication!!!!

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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, Alissa and I went for our annual physicals.

Surprise, surprise... my routine blood tests revealed Anemia, 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 his referral appointment to the Hematology Dept until the end of the Fall 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 suprise 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 team, Dr Lee and Nurse Jalee at Kaiser PC, and Dr Spielberger and Dr Kogut at Sunset Kaiser/City of Hope hospital.
I began to formulate a new reality and accept my "New Normal".
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've done remarkably well these past months on my pill-form Chemo, "roid-rage" 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!

And now... the 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:

So you've all wondered why I still can lead a semi "normal" life, with more good days than not-so-good-days.
It's because I've been on the following chemo regimen:

Pill form Chemo= Revlimid (.10mg capsules), and I still have (had) hair
Pill form Dexamethasone Steroids (20-40 mg!) paired with Pepcid
Mepron (looks like yellow finger paint!)
B-12- to build those cells!!
.81 Aspirin to prevent Revlimid complications

What the Heck is Multiple Myeloma?!

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic