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

Monday, July 17, 2017

Darza, Pom, Dex... I loooove You!

Hello 7.17.17
Great News :))
You won't believe my IgA stats!

And to think, where I was 7 years ago today...
Here's a walk down memory lane... I wasn't feeling too chipper 7 years ago TODAY, trying to recover from my stem cell transplant and my septic infected Hickman catheter site... 

(Be right back ... GI sabotage lol...)

Hello Everyone-
As always, so much happens between posts, but I'll let the pictures do the talking this time. (You can click on the screen shots for a larger view)

 Wow! Look how low my IgA is!
Go Darzalex, Pomalyst, Dex steroids

I know it's hard for some people to "see" me
and hear me speak of how "serious" my situation is
But Numbers Don't Lie, right!
Bad, Worse, Bad, Better, Better, Wow now :))

Even my IgG is rebounding
After my SCT, my IgG and IgM were always super low...
but a "strange thing" has happened with Darzalez.
I recall reading an about an IgG component...
I'll find the article link...

Look how Darza has affected my myeloma type
I used to only be IgA
Now I see an IgG component
 IgA only ^

And look below
I've joined another "sorority"

 I'll be asking my Dr about this tomorrow at my appointment
And for any of you myeloma "experts" reading this, 
please comment and let me know your thoughts...

Now I remember where I read about
"As Darzalex is an IgG monoclonal antibody, it can be detected on tests used for the clinical monitoring of M protein and may impact the determination of complete response and of disease progression in some patients with IgG myeloma" 

Yippee!! M Protein is still
"undetectable"-
reads as "Abnormal", 
but not a measurable numerical value!
A few months ago, it was over 3.4

But... after 21 days of Pomalyst
my WBCs plummet, I become Neutropenic,
so it's Zarxio to the rescue!
I'm such a pro now at grabbing a bit of belly chub
and in goes the shots with no problem

So today was my hubby Jim's all day adventure with his doctor's regarding his previous blood clots in his legs issue. Been a tough battle for him, as his veins have died a slow death from years of damage, and he has terrible swelling, DVT, and now "venous ulcers" on one leg from the swelling, and blood flow issues. So incredibly painful for him, and he's used to being so active and on his feet all the time, and that only exacerbates it. Getting old just stinks! So we spent the early day getting a Vascular Ultrasound and seeing a Vascular Surgeon. Bottom line for poor Jim: compression stockings, elevate the leg, and the home health care nurse comes 2 times a week to wrap the wound. It's like an "Assisted Living Facility" around here, but we both stuff our symptoms and get outside and take care of all the creatures we are responsible for, even when we don't feel well. I wonder what a "cement, suburban" life would be like lol... just being responsible for ourselves... oh well, we'll make it work, as all our animals are a part of our life for their entire life. 


After leaving all the appointments today, we were hungry, so knowing I would be at the Chem Lab all day tomorrow, we brought home delish deli food. Not sure what happened to me, but for the first time in a very long time, my GI was not happy, and I spent some time in the bathroom late today, tonight, reminiscent of the Revlimid "volcanic" days! (Remember those stories? And this one?) Still have an unsettled stomach, but we'll see what the rest of the night brings. Hopefully nothing, so I can get it together early tomorrow morning, take my 20mg steroids (as Darza pre meds), get to the lab to take my blood tests, in time for my Dr appointment, then all day Darza IV infusion. 

Good news is, I felt pretty good this month. Must be those awesome IgA stats! Just processing all the changes in my life (retirement pushed some buttons), accepting where Jim and I are health-wise and our lack of the "golden years options". Sshheessh, and I'm so "young" to be dealing with all this.... Anyway, my goals are to begin going through all my "stuff" (still haven't fully unloaded my office boxes yet), meet up with friends when I feel ok, and take a few local "day trips" when we are feeling ok. Always so much to process. Amazing how life continually throws us curves and forks in the road. My goal is simplicity, less is more, and most important, feeling ok, and just being happy every day. I am thrilled beyond thrilled Darza Pom Dex is currently my "magic elixir", and I hope beyond hope this triplet cocktail can outsmart myeloma for many many months to come. But I am a realist, and live month to month, blood test to blood test, and know myeloma is super stealth, and treatment changes are inevitable.  

I didn't even tell you the funny story about me trying to buzz my little doggie, and learned being a dog groomer is really hard, skilled work, that I absolutely do not possess! And Domino the attack rooster still trying to attack me thru the fence, but I outsmart him by going out to collect the eggs at night, after he and the girls are roosting for the night, as I dodge the rat-family... And did I mention, I had a nail in my tire, ...  so many more life adventures. But I have a life, and for that, so incredibly grateful!

My loyal, dear friend Kathy and I finally met up for a Frappucino!
I cancel on her, more than I see her-
  
And today, while waiting to see Jim's Vascular surgeon, I saw Karen, our amazing Chemo Lab volunteer. So nice to get out and about once in a while, and feel "normal" ha ha! 


Thanks for checking in and following my silly story. Hoping your life is filled with rewarding adventures, good health (or livable health), and all that makes you happy and fulfilled! Cheers to 7.17.17. 


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



6 comments:

  1. Oh..don't keep us in suspense too long..Can't wait..

    ReplyDelete
    Replies
    1. Hi Karen! Your comment gave me a giant smile :))
      Thank you so much for your enthusiasm and loyal following! Hoping all is ok with you and your hubby. Let me know how he is. xoxo

      Delete
  2. AnonymousJuly 18, 2017

    Those are great numbers. Should allow your marrow to heal hopefully and start producing more normally soon. Sure hope Jim can turn around to better health also.
    The first day or so after I take the Dex are the roughest(PMS in overdrive), hoping for a reduction in dose soon. But, great for running times:) Love your updates, you always find the rainbow in the storm:) Your wonderful gift had a great four hour ride the other day..my gelding was amazing...maybe it has special horsemanship powers:)
    Take care sweet CA girl, prayers for both of you,
    JC

    ReplyDelete
    Replies
    1. Hi cowgirl! So happy "we" went riding together :)) and "our" good luck charm gave your gelding super riding powers. I'm so happy you feel well enough to do all the things you do, and I agree, Dex is like PMS on overdrive lol. Great analogy Jan! Thanks for checking in and being such a loyal reader and appreciating my silly updates xoxo

      Delete
  3. Hi Julie,

    I hope you're well. My name is Joana Mangune and I work for Health Monitor Network, where we produce magazines, guides and more on several different health conditions. I'm currently working on a story on multiple myeloma and would love to set up an interview with you. Could you please email me at joanam@healthmonitor.com when you get the chance?

    Thanks so much!

    Joana

    ReplyDelete
    Replies
    1. Hi Joana, thank you for finding my blog and commenting. I will email you :))

      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.