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Wednesday, February 28, 2018

Happy 1 Year Anniversary to Darzlex, Pomalyst, Dex!

Hello 2.28.18

Unbelievable coincidental anniversary for this "on the 8's"post today!
Exactly 1 year ago today, February 28, 2017, I began Darzalex IV infusions.
Rather than recap my first Darzalex infusion story on this post, here's my post from Feb 28.17 and Mar 1.17 . For those of you that are not familiar with Darzalex- Daratumumab, it is an IV infusion spread over 2 days for the first initial infusion. This is done to prevent and avoid severe infusion reactions.

"DARZALEX® is a monoclonal antibody that works in several ways. One way this monoclonal antibody works is by attaching itself to multiple myeloma cells in your body and directly killing them, and/or allowing your immune system to destroy them.
DARZALEX® targets and attaches to a protein called CD38, which is present on the surface of certain types of cells (eg, red blood cells) and is also present in high numbers on multiple myeloma cells. Since DARZALEX® targets the CD38 protein, it may also affect other cells with this protein on their surface."

I'm thrilled to report that I did quite well with my initial infusions, and have been ok this past year, thank you Darza, Pom, Dex :))

Here's what myeloma was doing to me before Darzalex, Pomalyst, Dex:
(Mid to late 2016 was when I became refractory to Kyprolis Dex)

And here's where I am a year later:

I'm still surprised that Darza, Pom, Dex is continuing to hold myeloma's power over me to a minimum. Since I became Refractory to Kyprolis Dex mid 2016, after just 10 months or so, I was not holding my breath that this triplet would outsmart myeloma for an entire year. I've been even more surprised how well I'm doing, since the "required protocol" is a reduction in dose of Darzalex from 8 weeks weekly, to 8 weeks bi-monthly, to monthly now. Yes, my IgA has jumped a bit, but nothing like what it did in 2013, 2014, 2015, 2016. We'll see what my next labs in March bring. So it's Happy 1 Year triplet cocktail success Anniversary to me!


For those of you that follow my blog regularly, you know we lost our beloved big cuddly blonde Labrador doggie Pawsy to liver cancer at the beginning of the month. He left such a hole in our hearts, our life, the doggies, and our ranch is just not the same without him here. He was such a gentle loving soul, and just so irreplaceable... Not that I try to "replace" our critters when they pass, but we have always had a buddy system here. I just believe that animals are happier when they have a buddy of their own kind. I am a committed believer in Rescue, and always look to save a life, when one of ours passes on. Although we have 2 little doggies for company for our big doggie, we just have always had 2 Bigs outside. As a result I have relentlessly looked for a new Big for Abbie... to no avail. Sadly so many dogs have serious "behavioral issues", and with my and my husband's health issues now, I just can't take on the responsibility of rehabbing a big dog with issues, as I have in the past.

So in the process of looking for a Big... look who I found...
or should I say... look who found us!

We've visited several Shelters over the last several weeks, looking at many Big doggies. So many need homes. So many sad cases and sad faces. So incredibly heart wrenching! But while looking for a a Big, look at this Little that found me. That Face! Those Eyes! I wasn't going to give in, as we don't "need" another Little, but how could I resist this face, saying "Pleeeeeese don't leave me here"....

Pleeeeese Take Me Home
Look how adorable I am! 
I'm just a young lost stray boy needing a home

So what do think I did... 
Yep, put my name on his "Commit to Adopt" list. If the owner doesn't show up after a week, he becomes available on his release date, after his neuter surgery. The next day we went to visit him for a "meet and greet", and he completely stole our hearts. Pawsy must have "connected" us all together, knowing this little guy needed us... He's just a mini version of Paws. So uncanny. Just such a cuddly, playful love!

The following day, the little guy was neutered and we were able to bring him home! 

 Freedom Ride for "Little Jack"
Such a love bug! So grateful.

Happy lil boy
We love him so much!

And he fits right in with the Pack!
Here they're "sniffing for kibble", 
A game I play with the doggies, 
where I sprinkle their kibble on the lawn
and they get to "hunt" for it 

So that's my February 28th story for you. 
Darzalex, Pomalyst Dex has been an amazing success for me for an entire year, even though I become Neutropenic and very immune compromised almost each month. But living in a bubble and being super cautious about cootie contamination, is an inconvenience I tolerate to stay alive.

Although we lost a precious life this month, we saved a life that needed us.
I hope your February was good to you, and March brings happiness, health and smiles to your life. 

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


  1. Hi Julie!
    I sent you an email about a week ago, I trust I have the right email address,
    Hope to hear from you soon!

    1. Hi Una! Perfect timing :)) I was so happy to see your email with your beautiful pictures of you and Mom and your pets! Our new little rescue Jack is taking a lot of our time lol! He's so active, so I have to keep an eye on him all the time during his potty training, etc. He's hilarious how he's so happy and has "no boundaries", and just wants to be "on" us all the time. Rescues are the best :))
      Yes, I replied to you, even before I saw this sweet comment. Thank you for being such a loyal blog follower friend xoxo

    2. Hi Julie!
      Oh no! I didn't get your response back!
      I will double check but I haven't seen anything!

    3. So glad to be in contact with you Una xoxo


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
.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?”)


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.