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

Saturday, April 3, 2021

I Spoke Too Soon... April Fool's on Me!!!

 4.3.21

Hello Friends, 

I'm way too beat up to write much, but I had to update, so you all don't have my other post as what's actually going on...

Later on Thursday night, APRIL 1, I had two CRAZY things happen. 

1- I suddenly got a NON STOP bloody nose hemorrage on my Left side. My night was absolutely miserable, and I thought, ok Myeloma, this is IT, you got me, we're done... I won't describe all the bloody details, but let's say I went thru several several boxes of  Kleenex all night long, bleeding out and and choking on huge globs and clots in my throat, that I had to spit up, almost aspirating on... I really thought I would Hemorrhage to death. Yes, I know, call my Dr, go to ER... but why, for what? What are they going to do different for me there, that I can't do at home... except give me more bags of Platelets and Blood, but also get Pneumonia or Corona, etc at the same time... 

So I suffer at home,... 

2- When I woke up, and you won't believe this... I suddenly and I mean suddenly realized I had developed a crazy giant soft Hematoma Extramedually tumor mass on my Right side collarbone area like I developed one my Right side, last summer on Elotuzumab!!! This THING seriously was going to choke me, just like before, last summer/fall. It grew between the Left side collarbone and the neck. What the heck! This Bleeding and Monster Tumor stayed there until I took steroids (Sat 4.3), after another night bleeding out, and choking, I took two 4mg Dex Steroid pills, knowing they are prescribed for both situations like this,... as anti inflamatories...

OMG is Blenrep going to do a similar thing to me as Elotuzumab did, which I mention all the time, thinking it caused the evolution of my Extramedullary Myeloma??? 

I slept most of the day, tried to eat this evening, Scott came over to do the animal chores and take out bags and bags of bloody kleenexes lol. So how am I doing right now, Weak, tired, overwhelmed, so done with being SICK all the time, ready to try nothing but Steroids, but scared to do that. As I discuss with my adult kids all the time, Am I just existing and prolonging death, or am I living and prolonging life, in hopes that a "miracle might happen, and I can survive this EVIL DEVIL of a cancer. Just had NO idea what would eventually happen to me :(( 

Feeling stuffed from 2 eggs, 1 avocado, exhausted from the 48 hours of nose hemoraging, but good news, I think the Steroids are helping.  We'll see...

Just had to update all of you, as I feel and look awful and seriously cannot believe what is happening to me :((((



3 comments:

  1. Get to a lab and have your INR checked! STAT!

    Could be some of your meds are causing a "thinning" of your blood!

    This might be life-threatening, Julie!

    S.

    ReplyDelete
    Replies
    1. Hi S, yes you are correct. Blenrep and Velcade cause Thrombocytopenia. I knew this was a medication risk, Drs did too. Most of my Myeloma meds cause a super low WBC and Thrombocytopenia i. https://www.blenrep.com/
      Every Myeloma med, whether Immunotherapy or chemical chemo, has very intense side effects. Eye issues with Blenrep are a "Black Box warning". Have specialized eye drops, as do all on Blenrep. New FDA approved treatment from last year. Thank you for caring as you do. Are you a Myeloma patient.

      Delete
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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.