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

Friday, June 27, 2014

Go Revlimid 10mg! You ARE My Magic Pill

Hi Everyone!
I received some VERY good news yesterday regarding my recent blood work assessing my current status on the 10mg Rev + 20mg Dex cycle!!!

Last post I lamented about Revlimid's static effect and feared ineffectiveness this go-round. But I am so happy to report that my results show my Myeloma NUMBERS ARE MOVING DOWNWARD!!! (Some CBC's and white counts not terrific, but my ol body is battling!) Yiippeee!!! Time for some "pony-pal" adventures on a "good day" !!!

IgA moved from a high of 1400 as recent as March, to a skinny 780 this month!!! That's a little LESS than 2x the high end of normal as measured by 70-400mg/dl . So thank you very much Revlimid + Dex, etc!!! I like our new relationship :)

Additionally, my M-Protein did the downward slide too!
From 0.99 in March, to 0.78 this month!

These may not be giant slides down the brewing Myeloma volcano, but hey I'll take any movement in the right direction, while still being able to maintain my "quality of life" and not be on mega-doses, or new doses with new side effects!!!

No doubt, everyday brings many physiological challenges for me, and my immune system is still really compromised, but I count my blessings and do what I can, when I can. I've learned to eat like a horse on the good days, knowing my GI issues will attack me on the other days. I've learned to change days or skip meds if I have an important event to attend, not to mention, not eat much at all, if I HAVE to be away from my bathroom!

Case in point:   I entered my cute lil Bucket list Bug in my first ever car show! I absolutely dreaded and feared the line up at 7:30am!!! So I barely ate on Saturday, and didn't eat at all on show-day-Sunday, until the afternoon, AFTER the show was over! Also I didn't take meds on Friday or Saturday so I would be ok for Sunday's show. Sssshhhhh don't tell I did that!!! But seriously, this is what I mean by QUALITY OF LIFE choices!!!

Here we are getting parked and settled in

 My darling partner in crime Kelly 
with her sweet Challenger

Huge thank you to my friends at Impression Auto Salon
for my Bug's super "spa treatment"! BabyBlue's shine is blinding!

 Wow! there were over 200 stunning cars
lining the streets in Old Town

 Jim, me and Scott

 Thank you Lauren for this adorable surprise!
This T says it all :)

And so I say good-by to June, reflecting on all my June milestones since 2010. This time 4 years ago, I had completed 6 grueling months of Rev + high dose 40mg Dex, recovered from IV Cytoxan's awful effects on me, was attempting to get used to my central line Hickman catheter, my hair was beginning to thin, I had completed 2 weeks of Neupogen injections in prep for my Auto Stem Cell Apheresis, and I was packing for my July stay at City of Hope for my Autologous Stem Cell transplant... little did I know what was ahead of me...

Cheers to Revlimid being my Elixir this month... we'll see what July brings... but until then, live life fully each day, smile, breathe, laugh, and never forget the "glass is (most) always half full" in my book, and I hope in yours too!

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

Thursday, June 5, 2014

So You Think You're winning Myeloma

Hello loyal followers:  eekk, I really don't want to write what I'm reporting in this post, as writing out the numbers solidifies the facts and results I didn't expect. Call me naive, too optimistic or too hopeful.... but I was sure 10mg Revlimid was my magic pill back to Remission.

Heck, Revlimid brought me from 67% cancer to 10% in 2010 during my initial treatment prior to ASCT, so I "expected" this magic elixir to fix me up again. I really thought we'd see a considerable drop in my levels in a "good direction" this time. Well, not so much... and truth be told, I'm genuinely surprised my recent blood work revealed cancer is kinda winning. I say kinda winning, as my statistics aren't drop your jaw dramatic, but they show Myeloma is as strong as the chemo battling it. Rather than pummeling it into submission, Myeloma is holding steady (and creeping up), not going away this time. And yes, to those concerned that I am too lackadaisical about my treatment plan, this news kicked my butt.

And the #s are:
WBC's really low: 2.8 (4.0-11 scale) (Revlimid does contribute to compromising the immune system)
Platelets out of normal range now: 117 (130-400 scale)
M-Protein up again: 0.90 (normal = 0.0)
Beta Globulin Electrophoresis: 1.53 (0.65-1.10 scale)
Gamma Globulin Electrophoresis:  0.40 (0.70-1.60 scale)
IGA: 1110 (70-400 scale) and I keep hearing I am "high risk" IgA Myeloma
IGG: 296 (700-1600 scale)
IGM: 16 (40-230 scale) 

So the plan is: one more month (my request) status quo of 10mg Rev + Dex.
July will probably bring Rev up to 15mg, or out with Rev and in with Velcade, or try Rev + Vel + Dex.
Ugh, I am just not brave this time around, and I just want to feel good, and get back to "normal" (HA!). I am fearful of new side effects :/

At least I made it to Alissa's SDSU graduation last month!

I was able to attend my 4th 
at City of Hope, also last month!

 Dr Kogut, me, Dr Spielberger

 Dr Chai, me, Dr Farol 

My Stemmies are stored here
just in case I go for another Autologous Stem Cell Transplant
but at this time, the "risks" are greater than the chance of Remission

So that's my June story. We'll see what happens.
But for now, I am bummed Myeloma is being so obnoxious and proving to be a much stronger match for Revlimid's chemo powers then I anticipated.

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, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.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.