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Friday, June 8, 2018

Just The Facts. A Hole Bunch of Numbers

6.8.18
Hello Everyone. Hope your June is beginning happy!

You know my status from my previous "Holey" posts, so I'll just give you the stats today :))



Darn you IgA, stop climbing!

A little perspective from where I was
just before beginning Darzalex, Pomalyst, Dex



M Protein still not showing...
Wonder if Darza or?
could be suppressing accurate readings?

This range always gives me the head's up
changes are happening... 

My support team I brought with me to 
this appointment. Just wanted other ears :))

So yes, I agreed to Zometa infusions to "strengthen" my swiss cheese bones. I still don't feel great about it, but from what I read, half had problems from it, the other half benefited from it. My Dr suggested every month, I kinda laughed and said a resounding NOPE! Let's go every 3 months, and the first with a very looooooong infusion. If you missed my post with my Pet CT Scan report results, click here. Yes, I base a lot of my decisions on what I discuss in person and read from other patients. Fortunately there are so many legit discussion groups out there now, and all of us patients reporting in about our treatment experiences. Of course medical research and professional medical recommendations are first, but I won't ignore legit patient experiences.

Additionally, my Dr suggested we up the mg of Pomalyst. So I'll be leaving 3mg alternating with 2mg behind, and increasing to 3mg Pom only, for the 21 day monthly cycle. Hello Neutropenia to come. Hello Zarxio Neupogen to the rescue...  

The final new protocol:
Darzalex monthly
Pomalyst 3mg, 21 days on, 7 day break
Dex steroids 40mg per week
Zometa to begin in July

I'm so tired of myeloma. So tired of having to think about all aspects of my health all the time. So tired of having to be concerned with treatment to stay alive, side effects from all the treatments, cooties, and life focused on everything medical. After 8 years battling myeloma, I'm actually forgetting what a  spontaneous "normal life" is. A life of just going, doing, being. Free from all this self focus. I just want to feel good, laugh, play, focus on enjoying life... not living a life trying to avoid death...  



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



2 comments:

  1. Thanks for the update and glad you're through the worst of the "shock and awe" at the new developments.
    Some one has likely mentioned this already but if you have any dental work to do before you start Zometa, I've heard now is the time to do it.
    For myself, I'm one year post autoSCT! Doing KD as maintenance, in CR. So ok for now.
    I look forward to your posts and links and am cheering you on from the sidelines!
    Warmly,
    Bernadette

    ReplyDelete
    Replies
    1. HI Bernadette! Thanks so much for checking in and leaving your sweet update! Yes, ironically, I was scheduled some dental stuff for June, before LOL, my Dr mentioned Zometa, so all the pieces fit together, giving me no excuse to not try Zometa. My first infusion will be July 10.
      I am so happpppy to read you are doing so well post SCT and in CR!! Yiippee! for you!! And so glad you are doing Maintenance KD! I worry for those that are not on "something".
      Thank you Bernadette, for you kind comments about enjoying my blog. Means the world to me :))
      Stay well, and enjoy your status!
      xoxo

      Delete

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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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.