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

Tuesday, August 28, 2018

Dosage Decisions, Treatment Decisions, MRI, and That Creeping Up IGA


Hello loyal readers and followers-
Yesterday, Monday Aug 27 I had my monthly Dr appointment and Darzalex infusion. We discussed my IGA trending upward, but not a huge amount each month. I also mentioned my crazy, excruciating left side, lower back, butt and leg pain I get at night when trying to relax in a chair or the couch, but especially in bed. So WEIRD! It's the most intense, deep, radiating type pain ever. Since I didn't have a lot of  "intense" pain earlier on, all this deep pain I've encountered in the last year or so, is maddening, especially when trying to relax or sleep!! I alternate Advil and Tylenol, with Flexeril and gobs of Bengay. I stretch, pound my leg, bend, reposition, walk, "bicycle in place" and even lay perfectly still, deep breathing, trying to mentally will it away. Eventually I fall asleep and "magically" it's gone in the morning, and I don't have it again until the next night. So WEIRD. Thankfully on Steroid days, Dex's anti inflammatory properties attacks and suppresses that awfulness and all my other crazy bone, muscle, nerve, etc side effects, for about 24-36 hours. From what I'm reading, I think it's the higher dose of Pomalyst or maybe it's the residual Zometa in my system from July? I think I read that Zometa has a long "half life".

So I told my Dr I'd like to reduce the Pomalyst 3mg back to alternating 3mg with 2mg which I was doing since I began Darzalex, March 2017. I don't recall having this monstrous, indescribable pain prior to increasing Pom and enduring my CRAZY Zometa experience (see my July posts for those torrid details).So we'll see, as I begin Pom later this week, as thankfully I'm now on my 7 day Pomalyst break until Sunday. My Dr also ordered an MRI for me to follow up on my Pet CT Scan, to see what's going on with all my unbearable pain. Could this be the horrific bone pain most Myeloma patients mention? Or is this pinched nerves, muscle pain related to lytic lesion tumors, pinching or pressing on these areas? Or Sciatica? Ugh, who knows... but I do know, my tolerance and patience for side effects is waning after 9 years...
Yes, not a great idea to reduce dosage when my IGA continues to climb, but for me "quality of life" and less pain is more important to me than anything else.

I also asked my Dr about whether I should consider another SCT or Car-T, and she was surprised I asked, as in the past I was "No Way"... not suffering like that again... She did indicate that if was condsidering those options, now would be the time to do it, as my cancer levels aren't extreme, at this time... When I was originally Dx and prepped for my first SCT, my IGA was over 5700, M Protein was 4.3 and my first BMB showed 70% myeloma cancerous plasma cells. Hmmmm something to think about, but I want to see how my retro Darzalex plan works first. And I would probably want to experiment with all the myeloma treatments I haven't yet tried, or any of the new ones currently being approved... who knows... will cross that rickety bridge when I come to it...

So here's my life in statistics and pictures for you :))

I'm up about a 100 points from last month
Not happy about it, but not panicked about it either

Myeloma pal and neighbor Gary
He was Dx about 8 months after me
and we've been thru very similar treatments,
altho he's IGG and Kappa Light Chain MM
He's currently preparing for a Car-T trial with City of Hope 

Best Volunteer Ever, Karen
She takes great care of me and all the patients
and we have some great laughs about life
and when my Benadryl infusion meets my 40mg Dex steroids!

Still no visable M Protein
so perhaps Darzalex properties suppress it?

Here comes Darzalex

My awesome Nurse Josie
who always laughs at my Selfie taking

I picked up a Cancer magazine while waiting today
and was stunned to see Myeloma featured 
with all the "popular", more common cancers
Sadly tons of people are being Dx everyday with Myeloma
It's no longer a "rare" unknown cancer.... 

And that's my story for the last post of August, 2018. I'm already referring to my journey as "almost 9 years now", when I meet people and share my story. I think it's pretty dang amazing that I'm still here, and as "functional" as I am, 9 years later. It's probably longer than 9 years, as when looking back on all my early symptoms I denied in 2008, 2009, I've probably had Myeloma, or Smoldering Myeloma for a much longer time... 

I attended the IMF seminar this past weekend, which is very informative and well organized, has great Myeloma Specialist speakers, and I met some great fellow MM-ers. My almost 92 year old dad had a pacemaker installed this past week. I did circles around the barn last night past darkness, as I felt so bloated and stiff from sitting all day for my loooong Darzalex infusion, then sitting driving home, then sitting at dinner with myeloma buddy Gary and his wife. We took advantage of our energy blast and appetite rage from the lovely Dex steroids! I've gained a few pounds recently from eating ice cream on hot summer nights and other sweet goodies, so time to rein in my "F cancer" attitude and go back to obsessive calorie counting LOL. Wish I had the energy to walk more often, but my loooow WBC and ANC and extreme Fatigue most often prevents me from doing much physically. Ugh, to think what I used to do... Oh, I walked into several black widow webs, and killed a BIG one last night... I always feel bad snuffing out a life... but it's me or them, and I choose me, and not being bit!

Hoping all is good with all of you and yours, and you've had a nice summer. I love when you comment and let me know you're out there, and of course I love hearing your life story too. Thank you to all of you that loyally follow my posts regularly, and thank you to those that have just recently happened upon my story. 

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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
.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.