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Tuesday, February 7, 2017

Give Me a Break!

2.7.17
Hello February, I'm not a fan...

Today is probably not a good day to write a blog, as I feel lousy physically and mentally, to be completely honest. I am just so worn down by battling myeloma. So worn down by fighting for my health, and then being "shocked" that "nothing" I do, matters. I am just so frustrated with feeling sick except on steroid days. Then 48 hours later after the fake boost from steroids, I get to crash and feel yucky for several days, then begin the cycle all over again. And today, thanks to my very compromised immune system, I wake up with a sore throat, headache... here we go... so sick of being sick all the time...


I see and understand my blood test results, confer with my Doctors, but I just can't get used to me being a "terminal" "incurable" cancer patient. I can't stand how this myeloma cloud has parked itself over my life for 7 years now. My IgA and M Protein continue to climb, despite hitting myeloma with this new cocktail of Velcade, Pomalyst and Dex steroids. I have another week of Pom 4mg, Velcade shot this Friday, blood tests next Monday, then status appointment on Feb 16. My IgA has increased, but I did notice that my M Protein, went down a speck. Weird.

 IgA up

 M Protein down

Honestly, I'm surprised I don't have better results. Actually "shocked" that my numbers haven't plummeted. See, I'm rather "spoiled" from my treatment success in the past. I responded well and fast after initial diagnosis. Revlimid gave me some rough side effects, but Rev and Dex saved my life in 2010 before my SCT, and then for 18 months of follow up maintenance after my SCT, keeping me in remission. When I came out of remission in 2013, Revlimid and Dex steroids were my best friend again. Lousy side effects, but they kept myeloma "stable" for quite some time. When Rev and Dex lost their power mid 2015, and I invited Kyprolis in to pummel myeloma, and it worked for almost all of 2016, very successfully in the early months. I even came close to my IgA being near the high end of normal after several months of infusions. And for a month, my M Protein did not even show up in the Protein Electrophoresis test. But after several months, sure enough, myeloma mutated again mid 2016, and overwhelmed Kyprolis' power. By late 2016, we moved to Pomalyst, then recently added Velcade.

So after meeting with my Dr on Friday Feb 3, our plan is to stay this course for the standard 21 days of Pomalyst, along with the Velcade shots and 40mg Dex weekly. Then take the standard one week break from Pom which will bring me to the 3rd week of February. Most likely I will then start the Darzalex/Daratumumab.. unless Pom and Velcade have miraculously pummeled myeloma.




I hear good things about Darza, and by next blog post, I'll know whether I'll continue with Vel, Pom, Dex or move on to Darza, Dex?? Thanks for reading and caring as you do, and I hope all is good for you and yours. Happy Valentine's Day next week.

Here's a sweet picture of me and my daughter years ago...
throwback to better times...



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


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2 comments:

  1. AnonymousFebruary 08, 2017

    Vent away! Any time you need too. Just reading the DARA label is a reminder of how cruel MM is. I still hear good things about how it works though.
    I saw a quote the other day, "There are so many people that would like to have your problems." I am glad they don't have cancer and have no clue, but can't believe how they are wasting good health to worry about things that might never happen.
    I hate that you have to deal with all of this.
    Weather was in the 50's here, rode both days (three bald eagles were flying around above us as we rode), can't waste the good moments--with starting treatments just around the corner. My husband said, "Horses are a necessity for you, they give you strength and peace."
    I suppose that is why there are horses in heaven as noted in Revelation.
    Today we have snow.
    You are one special lady,
    JC

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  2. JulieFebruary 11, 2017

    Aww, thanks for your sweet post JC!! Love that you got some good rides in! Nothing is more therapeutic than natures, horses and cleansing the soul outdoors! Yes, we've all said that about our "problems" at some point in our lives... and I always keep perspective of "how much "worse off" I could be! Especially when I read other MM blogs, and hear patient stories at my monthly MM meeting. Stay well, healthy, and on a horse JC :) xoxo

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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.