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

Sunday, September 13, 2020

Crazy Labs Update!


Hello Friends-

Decided to start a new post with screenshots of my recent labs (rather then add to my 9.10.20 post), and what better day than the 13th to do so.

I am so thankful I am feeling better each day, and my side effects are lessening daily! I am treating myself like GLASS, like I have been for some time, but even more so. I just don't want a repeat of June, July, August if at all possible. 

Had a phone appointment with my Radiology Oncologist on Thursday, and went over my xrays and scans again. I sure wish I could read the CD DVD disc they gave me, but it's all UFOs to me lol. The concern my Dr has is the lesion on the Right side collarbone, and a fracture there too. That's were my pain is now, but again, so much less than in the weeks prior. She is also concerned about a fractured rib that also has a MASS that also is growing into my Lung. Huh... omg, all this is so complicated and foreign to me, as I used to be so healthy, I just can't wrap my head around all this myeloma damage. 

So guess what I said?
Yep, let's postpone treatments to October, as I just want to get rid of these crazy side effects, and feel better. She really doesn't think my fevers, and other crazy side effects are Radiation related. In 2018 Radiation gave me such relief, so that's why I attribute all my insanity to Elotuzumab. I don't want to scare my fellow myeloma warriors about Elotuz-Emplicity, as it's probably a great treatment for IGG and Light Chain type myeloma. But my IGA type myeloma sure got pissed off, and all Hellllllo broke lose for me...  One of the reasons I feel this way, is that my Lambda Light Chains are high, and I've never had that before. I've never had high Light Chain myeloma labs, so some sort of Mutation must have happened. You can read about Elotuz here and other Myeloma sites: Emplicity 

Ok, here are screenshots of my recent labs, and today I will take more labs for my Chemo lab visit tomorrow for retro Velcade. So far, just the "regular" side effects from Velcade, Revlimid 10mg and Dex 40mg. You know, the Neuropathy, then Dex crash, then hours in the bathroom for several days, or hours after I eat, Neutropenia, etc. If it wasn't for the Dex, I would look anorexic, as most everything goes thru me lol. But I don't mind that, good to be cleansed all the time lol. Thankfully I don't have the crazy debilitating pain in my head, neck Clivus, and Left side Clavicle, hands, arms, etc much any more...

Crazy not much change in my IGA
Thought it would be thousands more
But still 8x the HIGH end of normal. 
Crazy I'm still as "functional" as I am :)) 

Maybe Velcade, Revlimid, Dex 
is doing something!
Or Mutation is at work

So weird!
Never had high Light Chains!
Mutation activity??

But this one!
This is the one that made me think my 
IGA would be crazy high. 
See why I think everything mutated
Thank you Elotuz!
I was 4.3 at Diagnosis Dec 2009
and now this! 

So who really knows what's going on inside of me. I would love to have a chat with Myeloma and hear what really is going on. Labs tell everything, but hey, I want it in words :))

Last CBC and organ status labs were my usual low, but I put myself on Iron, Will be interesting what labs say today... 

But my goal at this point, is No Pain, Slo-mo Mobility, Quality of Life, and myeloma labs that are steady. I don't even care if they're high at this point, as long as I feel ok, can function as I did before Elotuz. A steady, consistent roller coaster is ok by me. My IGA has been as high as 5750 at Diagnosis Dec 2009, so not there yet...

Hopefully my next post will be "just kidding", I'm fine, they have my labs mixed up with my invisible twin. I just want to get on with my "missed life"... 

So I lament and have pitty parties:
Senior horses I will most likely never ride again, 
Beaches, Forests, Natural Wonders I will probably never be able to visit again,
Food I used to love, now doesn't give me any pleasure anymore, just diarrhea and heartburn, 
Our own backyard, gardens, flowers and animal critters wait for my attention that I won't be able to give, as pain and fear of fractures and broken bones limits everything I do...
And I so miss get togethers with family and friends. so many places I wanted to go...

Please friends, just don't put things off, hoping, planning you can do it all tomorrow or during your "Golden Years"... I was too smug and presumptuous about my once "good health" and my future, our future... poor tragic Jim...

Thank you for reading, caring, and commenting as you do. Means the world to me that my blog is meaningful :))

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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, 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.