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

Wednesday, March 28, 2018

Hello Spring, Body Scans and Birthdays!

Hello 3.28.18


It's a beautiful Spring day today, and I am thrilled to be alive. Not feeling terrific, but not feeling too bad either. If you recall from my previous updates, Myeloma's on the upward move again, so last Dr appointment, we discussed raising the dose level of Dex steroids, Pomalyst, and possibly going back to more frequent Darzalex infusions. But if you know me, I put on the brakes, and opted to up doses one med at a time, so I am able to differentiate which side effects change or increase from which medication. 

Some might say I try to be too in control, or self "doctor", but no, I just want to know, in as much as I can, what is happening to my body and why. I'm analytic and a knowledge seeker. Just my nature. So we opted to increase the Dex steroids from 20mg per week to 40mg per week. I took the 40mg this past Sunday for my son 's birthday celebration, as I try to plan my "roid rage" for fun times, or when I can "enjoy" the extreme up, and blast of temporary energy I get. I also plan for the yucky crash, and make sure to not plan anything for several days after taking Dex. 

I'm so grateful to be here to celebrate another birthday with my amazing son. Who knew, I would be such a "medical miracle" and still be here 8 years later. Yes my type of IgA myeloma is complex and "high risk" - "aggressive", which requires constant, continual treatment, but lucky me, all the chemo and immunotherapy regimens I been on since diagnosis Dec 30, 2009, have been mostly tolerable, and Have Kept Me Alive.

I continue to be amazed and fascinated with all the variations of Myeloma, the variations of continual or intermittent chemo treatments, the wide variety of side effects, and the crazy life alterations all the myeloma warriors out there experience! Some are completely debilitated by myeloma. Some go years without treatments. Some are diagnosed, treated and go on with life for months, years without meds. Many like me, are on continual, constant myeloma killing meds. Some have extreme painful physical symptoms and side effects. Some blast through treatment after treatment, with little success. Some have extreme bone issues and bone pain. Some are diagnosed, treated, and sadly, their body fails them, and myeloma wins....  Myeloma is an awful cancer, yet so fascinating...

You haven't won with me yet myeloma. You haven't entirely stolen my life.
Look how lucky I am:


Happy 32nd Bday to my amazing son Scott!

Seriously, one lucky momma here :)) 
Alissa's big 30th Bday is next! 
Whoohoo! I made it! 


So my NEXT BIG NEWS will be on my next post, as I had a Bone Density Scan yesterday, and will have my first Pet CT Scan next week. I've had annual Skeletal Scans, and previous Bone Density Scans, but never a Pet CT Scan. I've had an MRI, but I think that was prior to my Myeloma diagnosis. I didn't realize the diet and fasting prep for the Pet Scan, and that they administer radioactive glucose. Hope my body doesn't freak out from that. If you've had one, please let me know how it went for you, and what it feels like. 

I have my next Dr appointment and Darzalex infusion April 9, so that's when I should know the results of all these tests, how the 40mg Dex is affecting myeloma's surge, and if I'll need to increase Pomalyst and or Darzalex too. Wouldn't it be nice if the scans show "nothing", and that my existing Lytic Lesions haven't changed, and there are no new ones, or no new bone deterioration. Wouldn't it be super cool if just Dex 40mg sent a message to myeloma, and my numbers plummeted. But who knows. I really don't "worry", I just wonder what my body is doing, why all this happened, and is happening, and what we'll do about any "bad news". It is what it is, and what myeloma does with me, I don't have much control over. But, thankfully, my wonderful doctors and I do have control over the attack plan...  Can you even imagine being on cancer treatments for 8 years... so unreal! 


Hope all is full of Spring beauty and good things in your lives.


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




6 comments:

  1. I was diagnosed with MM in 2015. I had a autologous stem cell transplant in November of 2015. Unfortunately, my numbers are going up. I was taking Ninlaro and 20mg of Dex once a week. They put me on 4mg of Pomalyst and 40mg of Dex once a week to try to get my numbers back down. After about 2 weeks on the Pomalyst, I started feeling off balance. All the time. No fun. Especially since I am an avid hiker. Feeling off balance and hiking places like the Grand Canyon don't mix. I stopped taking the Pomalyst, and am hoping they can find something else, or maybe just put me on a lower dose. I am glad that I found your blog! It's great that you are out there enjoying your life! I think that I am even more motivated now to go do the things I love.

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    1. Hi Scott! Thank you for finding my blog, and leaving a comment about your story. Wow! From your dates above, looks like you got 3 years "remission" or a break with stable numbers. That's so awesome. My SCT was 2010 and I had "remission" with 5mg Revlimid maint for about 18 mos, then we tried no meds, and within several months, MM came back mid 2013, and I've been in continual treatment ever since.

      I would definitely vote to try Pom with a lower dose. As you may have read, I tend to start "less aggressively" then move up doses if need be. I'm currently on Pom 3mg, alternating with 2mg, as I always wind up Neutropenic on higher doses.

      And yes for those of us that love nature and the outdoors, myeloma can be a cruel saboteur. I had to drastically change my outdoor lifestyle due to extreme fatigue and surprise lower GI issues. But I do what I can, to be outside and active on nice days :))

      Thanks again Scott for checking in, and letting me know you enjoy my stories. I wish you the very best, and ask about lower doses, so you can continue to enjoy the outdoors as you love. Be sure to comment back, when you check in again and let me know how you are doing. Julie

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    2. PS- if my cowgirl MM friend Jan, reads this, she has a very inspiring MM treatment story, as well as a VERY active outdoorsy lifestyle. She's my hero for continuing to ride her horses and do all the things she does. And she has additional winning years on us too!! So when you can Scott, get out there, and do what you love to do!

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  2. Hi Julie, I have had several PT scans for lymphoma. The first time I took 1 Ativan. The second time I did not take any meds. Almost freaked out. I had to talk to myself the entire time not to have the tech's get me out of there!! The reason it was harder the second time is because after they lay you on the table they lay a blanket over you, then wrap you up like a papoose. You should not move during the test so I got claustrophobic as a result. I now take 2 Ativan, 1 30 minutes before the test, and 1 when I am taken back for the test. No reaction to the glucose, no pain, and the technicians are very good at Kaiser PC. So the test itself if pretty easy. And then I go home and sleep!! Hope all goes well with you when you have the test. I faithfully read all your blogs and am amazed at your positive, fun, honest writings. Glad you got to celebrate Scott's birthday - I know these moments are even more precious for someone who is fighting or has had cancer. Life is precious!! Keep fighting and I will keep cheering you on and praying for you.

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  3. Hi CB!!! Thank you so much for your description of the PT Scan! I'm headed there in a few hours, and darn, did I plan it wrong. I haven't eaten since last night for the "glucose fast", and won't be able to, until much much later today... oh well. I guess most would have gotten up early to eat in advance, or planning the Scan first thing in the AM!

    Anyway, thank you for your description and advice. I don't have any Ativan, so hoping I won't have any probs. I'm generally pretty good about visualizing and controlling my thoughts and feelings for things like this. Must be all those years in the "counseling" field, right :))

    Thank you so much CB for being such a loyal blog follower, and for your positive comments. As I always say, I never know who's reading my story, and I truly appreciate you commenting and letting me know you are :)) I thought and thought about our connections, and figured out how we know each other, so I will PM you :))

    Hoping your remission status is good, and you are far away from all this treatment craziness. How did this happen to us? Ridiculous! I shake my head at 8yrs of this, and even tho I know it's forever for me, sometimes I secretly think it will just disappear LOL... but not a chance, labs yesterday show I'm Neutropenic again, and I'll find out my MM status on Monday at my next Dr and chemo appt.

    Thank you for your friendship and loyalty CB 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 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.