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

Wednesday, December 2, 2020

Treatment Options, New Myeloma Vocabulary Word = Extramedullary What? Extramedullary Who?


Hello Friends and Myeloma Warriors. Cheers to all of us making it to December 2020!

I am so beat up.... Day 3 of 40mg Dex Steroids, plus Kyprolis IV Mon and Tues, and last night 2 of my little doggies woke me up around 3am to go outside, so I didn't get much sleep. Yes the Roids are taking their toll on my sleep, but I truly think this High Dose is doing some hard core good. My Dr is not happy with my perspective, as she is more "aggressive" with wanting to do (multiple) "current treatments" more than me. Most of you would probably side with her, but honestly, at this point, surviving 11 years with this Monster, I only want to feel good as many days as I can, and obvi if I do new treatments I will have new side effects, blah blah blah. I used to be ok and even look forward to what new Immunotherapies would do to my Myeloma, but not now, not after what stikn Elotuzumab did to me in the summer!

But as my Chemo Pharmacist said... "Numbers Don't Lie"... and the high dose Dex steroids and Kryprolis is doing something good, as you saw on my last post! And what's that other quote, "if it ain't broke, don't fix it" right. Meaning if this is working, why change it up... 

But my Dr is worried about the high dose, long-term affects of Dex Steroids on my bones, A1c, and body in general. But again, at this point in my battle, I say "who cares"... well not totally, as I do want more time, but heck, if I can feel good, be home, and pummel Myeloma at the same time, I'm on board. 

So she also is very worried about the migration of my Myeloma from my Inside my bones to Outside, as my Scans have shown. I have since (this year) Radiated the head-skull-sinus mass, lung mass, clavicle/collarbone and rib fractures, and now we have to deal with the biggy- The Abdominal Mass. Maybe we can Radiate that annoyance too. Ugh... dang you Myeloma, stop trying to killllll me. So over being a sickie. 

I learned a new Vocab word, or perhaps it was mentioned previously, and I just had so much else consuming my overworked brain, that I didn't really absorb it. My Dr and the scan and biopsy reports now term and reference my Myeloma as.... EXTRAMEDULLARY. Ugh, thanks Myeloma, more research, reading, understanding and deciding what to do... I just want to Swiffer, do laundry, chores, be outside in the sun and pet my horses and other critters, lol... but I am sooooo fatigued and exhausted... I do so little, even when pushing myself so much... And then I wind up fracturing something, pulling muscles, twisting nerves, etc. I hate pain, I hate challenges now. I just want simplicity and all the "feel goods". Cmon Myeloma, grant me a wish or 2 for a change!

From Google:

"Extramedullary multiple myeloma (EMM) is an aggressive subentity of multiple myeloma, characterized by the ability of a subclone to thrive and grow independent of the bone marrow microenvironment, resulting in a high-risk state associated with increased proliferation, evasion of apoptosis and treatment resistance."

Lovely, thank you Myeloma...

Here's the "good news" screenshots again from my previous post:

IGA down 900 points!

Beta 2 way down!

Next up M Protein
Here's my raw numbers:
Current (Nov 25)     = 3.79
Last month (Oct 25)  = 4.50 
Normal = Zero lol

Ok Friends and Myeloma Warriors, what would you do in my case?

Stop the High Dose Roids? Get on a super powerful, multi dose chemo regimen? Which ones? Head for the Hospital for the Holidays, LOL? Stay the current course? My Dr did mention adding in the Original OLD Myeloma treatment of Thalomid-Thalidomide. Remember that one, from waaaay back when? Haven't done that one yet or any of the new ones listed here: 

Can I please just get out of this. Can it all just magically go away, as I used to think it would. Can I please just do a treatment that kills Myeloma and doesn't steal what remains of my life? Not denial, just want to feel good, kill Myeloma, and go on with life... I think I'll make myself some eggs and cinnamon french toast right now :)) 


  1. Hi Julie,
    I too wish the myeloma could just go away and leave you alone to live in peace and comfort, enjoying your family, friends and little ranch. Only you can make the decision about what treatment to try next, keeping in mind your priorities and goals. I hope whatever decision you make gives you the best quality of life you can have. Sending you my best wishes for improvement in all things, Bernadette

  2. Thank you so much for all your encouragement, support and care Bernadette :))
    How are you feeling and what treatment are you currently on? Or on Maintenance? Sorry I forget your details you've told me. How many years for you? Hoping you are able to enjoy every day and your family xoxo


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.