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

Wednesday, May 20, 2020

Hello Elotuzumab and My Ol Friend Revlimid

5.20.20
Hello Friends-

So much to share, and of course today is Crash Day from Monday's New Treatment Regimen, so I'm feeling new and different side effects, ugh... Also just as I was beginning this post, I received new (shocking) lab results from Monday's pre-infusion blood draw. Didn't know they were running my IGA, Beta2, along with the basic CBCs, etc, prior to my new treatment infusion, but glad they did as a baseline...  Thank you for checking in and caring as you do!

Ok, here we go with the new treatment story:

Hello my new Myeloma killer- Elotuzumab!

Hello new Infusion friend to pummel Myeloma




Hello again, my ol friend Revlimid who originally saved my life
after my December 30, 2009 IGA Lambda Myeloma diagnosis.
Was on Revlimid 2010 before my July 2010 SCT,
Then low dose maintenance 2011, 2012
Took a break summer 2012 to summer 2013,
Then back on 2013, 2014, early 2015
Until I became "Refractory" to it, and switched
to Kyprolis...

So basically my Myeloma is trying to rage again. I am such an "under reactor" and naive optimist, and always think things will just magically be ok, or that my myeloma diagnosis was a mistake. Until I get slapped in the face with reality in the form of lab results. Well I've received several wake up calls in the last week, along with side effects that just won't go away. All these I have been denying away for quite some time now. 

I had a CT scan back in January, and it was noted that I have a new "mass" in my Right side skull. It measures 36 x 37mm. I think I even posted about it then, but with my husband's complicated Alzheimer's situation, and then the rise of Corona Covid, I ignored my news and hoped it was all wrong, or again, would just magically resolve itself. Well, as my headaches came and went with varying degrees of intensity, I just couldn't deny something was up in my head. I had intense headaches back in late 2019, early 2020, but associated it with the crazy "head colds" I had on and off in Dec, Jan, Feb. I even had a CD disc of the CT, but I can't make heads or tails of the data, and it all looks like outer space meteors and aliens to me. It wasn't until I met with my Dr last Thursday, and she was able to locate the written report and print it out for me, that the reality of this monster growing in my skull, hit me. And it's continued to hit more and more each day, along with the increase in IGA, Beta2 and M Protein levels. I can't deny my status anymore, and I can't just "hope" it will all be better, and disappear... Here are my realities and wake up calls: 



Wow, a 500 point jump in just 10 days!

Up up up...

So Monday was the first of my new treatment triplet of Elotuzumab/Emplicity, 28mg of Dex steroid pills at home, along with another boost of 8mg of Dex steroids via IV with the Elotuz infusion, along with 50mg of Benadryl, along with 2 pills of Tylenol, I think a total of 500mg, and some Pepcid. Then I take the 10mg Revlimid pills daily (at night) for 21 days, just like years ago. Basically all went ok with the first infusion. I did have a slight stuffy throat reaction very briefly, but we slowed the flow of the infusion, and all was ok. As I have posted before, I love the up up up buzz I get from the Dex steroids, along with the relaxing sleepiness of 50mg of IV Benadryl, along with the time I am at the chemo lab "just relaxing", no one needing me,... so treatment days for me, are actually rather pleasant lol. But I know the crash is coming, so I do mentally prepare for that. Late Tues, into Wed is a struggle, but by mid Thursday, I begin to feel a lot better. I'm very fortunate I respond well to steroids, and don't have the horrible reaction many do. Well, some weeks I do. Some weeks it's harder on my stomach than others. I have associated that the lower my WBC, the less dramatic UP I have. 

Here we go
back to IV infusions

Lucky me, room with a lovely view

Anyway, I have scheduled the recommended MRI for early June, to further look at the monster growing in my head. I am still uncomfortable with the Gadolinium contrast used for the scan, but I guess I will just have to take my chances, and hope I don't have some crazy allergic or kidney reaction. 



Please let me know if any of you reading this have had a negative experience with the Gadolinium contrast dye with a MRI... Ugh, I just don't want to deal with another challenge... 

I'm just so sad Myeloma has consumed the last ten and a half years of my life, and the reality is, will consume the rest of my life, just trying to stay alive and deal with all the side effects and body deterioration. A mass in my skull, head is kinda scary. I've been allowing myself to think more about this reality. Radiation to the head, brain is a bit scary... Don't want to lose any more brains than I already have...

Hoping this crazy life isn't too crazy for you, during these crazy crazy times! Thank you for checking in and caring about my story as you do. I appreciate all your comments, and you sharing your story here with me and everyone else.

Jack and Nala
2 of our "support staff" :))




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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
B-12
.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?”)

Infections

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.