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

Thursday, September 10, 2020

Finally Some Relief!

 9.10.20

Hello Friends,



Finally! 
I am feeling better and getting relief from the fevers and excruciating pain!
I don't want to jinx myself, but I haven't had a fever now for a week, temp staying between 97-98s! It feels so good to be on the road to "normalcy" . And the horrific pain in my collarbones and shoulders is slowly lessening, and I have so much more range of motion! So excited about that. I can shower and dress without help, and most importantly, I can once again drive myself to Labs and medical appointments!!! Just beginning to attempt little chores around the house, and trust me, I am so very careful and continue to treat myself like glass.

I truly believe I had some extreme reaction to Elotuzumab, like I had with Zometa in 2018. It's so crazy  how we cancer patients put all these medical chemicals in our bodies, NOT KNOWING WHAT THE REACTION WILL BE!! Sometimes "ignorance is bliss" or honestly, I have just given trust and control to my medical team, that I will be ok with what I am treated with. Of course I've spent endless, uncountable hours researching Myeloma and treatments since my Dec 2009 diagnosis, so I know what all the myeloma treatments are about, but there's never any advance knowledge how our bodies will respond and react to each treatment. I read all about the side effects of all the treatments proposed, and do what I can to anticipate various side effects. For the past 10.9 YEARS of treatments, I have micromanaged myself quite well, but the reaction to Zometa and Elotuzumab completely caught me off guard and I hope to NEVER EVER experience again what I went through in June, July August! Crazy how I do so well with some, and then this... but I'll never know what REALLY happened. I'm just so very grateful I am on the road to feeling better and feeling like "me" again, and feeling hope again. 

Have a phone appt with my Radiology Oncologist soon, so I'll be back to continue my update and post my crazy Labs! I think Elotuzumab even "mutated" my IGA type Myeloma, as I have a higher result on my Lambda Light Chains, that I've never had before!

I'll be back, thanks for checking in, and being such a loyal follower :)) 



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9 comments:

  1. UnknownSeptember 10, 2020

    So glad you are feeling better.

    Jewell

    ReplyDelete
    Replies
    1. JulieOctober 10, 2020

      Thank you Jewell, yes anything improvement is better than what I experienced in June, July, August!

      Delete
  2. UnknownSeptember 10, 2020

    So glad you are feeling better.

    Jewell

    ReplyDelete
  3. TCBSeptember 10, 2020

    Wonderful news!

    Your strength and perseverance is an inspiration for me.

    ReplyDelete
    Replies
    1. JulieOctober 10, 2020

      Thank you TCB, for letting me know my posts and thoughts matter :))

      Delete
  4. OsabravaSeptember 11, 2020

    Hi Julie!
    Glad to hear things are looking up, hope they just keep getting better and better! How weird if being on elo changed your myeloma. I guess it's true that every treatment changes it! Warm cyberhugs to you...Bernadette

    ReplyDelete
    Replies
    1. JulieOctober 10, 2020

      Hi Bernadette, yes the only thing I can attribute my horrendous pain, tumor reaction and fevers to is Elotuz. I was ok on Velcade, Cytoxan, Dex for a year and a half, and didn't have anything like I did in June, July, August 2020. I think MM patients with IGG or Light Chains do ok, but my IGA myeloma was just made worse by it... but I'll never know for "sure". Thank you for caring and commenting as you do xoxo

      Delete
  5. AmySeptember 24, 2020

    Hi Julie -

    I was diagnosed 9/2/19 with MM. I am +121 day from my SCT. I just wanted to let you know I have been "stalking" your page for quite sometime now. It has been UNBELIEVABLY helpful to me. I just wanted to let you know how much I appreciate your blog. It is just perfect. Great amount of information and your attitude is inspiring. Just wanted to let you know how much it's helped me. I hope you are feeling good today and having a good day.

    ReplyDelete
    Replies
    1. JulieOctober 10, 2020

      Hi Amy, wow thank you so much for letting me know my posts are helpful to you! Congrats on your successful SCT. I will always remember mine in July 2010. Please let me know your story, and what type of MM you are, and what your next treatment step is and anything else you'd like to share. I'm so glad my posts were helpful and "inspiring" to you :)) Thank you for letting me know!

      Delete

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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.