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

Monday, April 20, 2020

4.20.20

Hello Friends,

Hoping everyone is staying safe, well and away from all the Cooties! If you're a Myeloma patient, I'm guessing CoronaV has not changed your life as radically as for a "well person", right? We've been "sheltering in place", "quarantining", living in our "protective bubble", avoiding cooties and germs since diagnosis/chemo, because we're so Immune Compromised! Myeloma and treatments have forced us to be ultra aware of cootie cross contamination, so we clean and sanitize everything and everyone always! We were trending before all the current trends!

Remember this game!

Nope, my life hasn't drastically changed because of Covid19. If you've been following my 10 year story, you know my lifestyle and challenges, and my philosophy of "self protection". So all that has drastically changed for zillions of the "healthy population", hasn't really changed that much for me. Yes since my Myeloma diagnosis, I've limited my life more than others probably would, but hey, it's worked for me for over 10 years, and I haven't been super sick beyond the annual bouts, haven't been hospitalized, and haven't had Pneumonia.  

BUT that raises a Very Interesting point, that the news is all a chatter about.... COULD WE HAVE BEEN EXPOSED TO, AND POSSIBLY EVEN HAD CORONAVIRUS/COVID 19, sooner than we were aware, before the announcement of a "Pandemic"? I think back on how I was sick off and on late Dec, Jan and into early Feb! I remember feeling a strange sickness, but I would always rebound in time for my Monday's steroids, Velcade and Cytoxan. Yes, the steroids would always mask symptoms, and I think that was probably part of the problem of getting and staying sick for so long. I just kept pluggin along, because I have to... I really wasn't awful until late January, when I finally wound up with a fever for about 4 or 5 days. I remember early Monday morning, before the 40mg steroids kicked in, I felt dizzy, light headed and not well at all. Then the steroids kicked in, and I rebounded. But I bet I was getting sick then, as next day, late Tues night, early Wed I developed a fever, and it was downhill from there for the rest of the week.

I remember being surprised I didn't have a lot of nose congestion issues, or chest congestion, but I did have a never ending awful headache and cough. Probably fractured a few ribs coughing so much. So many other random symptoms too. I also recall using my inhaler that I rarely, if ever used. Would be really crazy if I actually had CoronaVirus Covid 19!! There are so many articles and posts about it, I'm sure you've read it too... Guess I won't know until a reliable Antibody test comes out.

https://news.usc.edu/168810/usc-covid-19-antibody-researcher-answers-questions-about-testing-in-l-a-county/

https://www.usatoday.com/story/news/factcheck/2020/03/26/coronavirus-fact-check-could-your-december-cough-have-been-covid-19/2899027001/

Well, aside from CoronaV, things escalate daily with my Alz hubby. Tragedy beyond words... but I don't feel like whining about that right now... well I do, but I won't :((

I'm suspecting Myeloma is rearing it's power again, as I have symptoms that remind me of initial diagnosis and other years when my IGA and M Protein escalated. I am tired and fatigued all the time, but just keep going, cuz I don't have a choice... I have more headaches, neck pain, bone pain, etc. Hate hate hate the awful headaches, neck pains, etc. Which reminds me that I am supposed to go for another head scan... I think I had another lytic lesion(s) my Dr wanted further looked at... so much has happened 2019, 2020... I just can't keep up with it all... I have a phone appt on the 30th, so I will ask then. Maybe I will email her sooner, as I the headaches last week, and especially this weekend really revved up. Steroids today lessened the intensity thank goodness.

So I've been thinking about what treatment protocol I would try next, when my current 40mg Dex, Velcade and 400mg Cytoxan-Cyclophosphamide stops working. I've thought about asking my Dr if we can go backwards and try combos of previously used chemos. As you know, I am so scared of new meds because of I am so scared of new, unknown side effects..




Here are some other good links of things I've been thinking about...

https://www.myeloma.org/videos/askdrdurie-it-okay-take-vitamin-b12-same-day-velcade-0

https://www.myeloma.org/blog/dr-duries/are-women-risk-myeloma-if-they-sit-too-much

https://www.myeloma.org/cure-blog/future-looks-bright-including-cure-myeloma

LOL LOL

Take care everyone, and I hope you and your loved ones are all doing ok in your "safe at home" bubble. Please let me know how you are, and for my Myeloma friends, please let me know the various treatments you've been on, and any recommendations you have for my next step!





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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
B-12
.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.