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

Monday, November 18, 2013

Chemical Warfare part 2! Mission = Remission Again

Start running Myeloma!!!
Chemo's coming to gobble you up again!!
So we picked up some of my prescriptions, after my treatment planning appointment Nov 18... I couldn't help but laugh when I tried to organize all these meds in my "pharmacy drawer". There's a lot of meds here again! It's 2010 all over again... but actually I am grateful for the deja vu medication treatment routine, as I now know how to manage the side effects from each one. I take some in the morning and some at night. Some with certain types of foods. Some without food.
Can you guess which I take WHEN?

Frontline attack #1
Fortunately at a low dose to begin with!
This Rx comes from the Kaiser "specialty pharmacy" in San Francisco
They are so wonderful with personal calls, and sending it FedEx next day!
Hello again my friend Revlimid!
We'll be friends for 3 weeks on, 1 week off.
Cost is unbelievable! I just received my new Rx!
(and the 2013 price is even higher than my 2010-2012 (of course!)
Ready for this... $9,283.57 per 21 day cycle! OMG!!!
Interesting article here regarding cost and survival



The magic hot pink pill to prevent allergic reactions and hives from Revlimid
Back in 2010 when they tried higher doses with me I had huge allergic blotches and rashes...
I didn't realize how serious it was at the time

Good ol Aspirin to prevent blood clots
and deep vein Thrombosis from Revlimid

ROID RAGE right here !
I have a love/hate relationship with you Dex!
 5 cute lil pills per dose, but dang they do a number on my system!

Omerprazole to prevent ulcers, acid reflux, etc
These I have to remember to take longer, as the Dex roids have been
wreaking havoc on my GI system 


Antiprotozoal to prevent Pneumonia and other cooties!
It has the consistency and appearance of yellow preschool paint, with a Citrus taste
Quite pricey at over $2500 per Rx


Antiviral to prevent Shingles
I forget if I did this pre and post stem cell transplant in 2010

And I think I will add B-12 and a daily vitamin to this chemo cocktail as I keep getting sick!!! ggggggrrrrrrrrrrrrrrrr

How do I feel overall? Kinda spacey, mentally worn down and a bit sad. Seems like I am sick every week now. (Home sick again now! ugh!) Most of the time, I feel dehydrated, dizzy, nauseated, weak, tired, GI yucky stuff and nasal stuff etc!!!!  Just go away Myeloma!

I really thought I would be "different" and get remission for a long long long time... instead, Myeloma came back fast and from all the studies I read... my clock is ticking faster than I really allowed myself to absorb before. Am I lucky if I have 10 years from diagnosis? 

2009 + 10 = 2019
Tick... Tick... Tick... Tock

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

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8 comments:

  1. AnonymousNovember 19, 2013

    Love and prayers coming to you from North Carolina. You will DOMINATE this, Julie!!

    ReplyDelete
    Replies
    1. JulieNovember 20, 2013

      Thank you "lovethebeach"! Do you have a blog? My little blue bug is from N Carolina!! :)

      Delete
  2. UnknownNovember 19, 2013

    Sorry to hear you're back in the barrel again....relapse ain't no fun. But big things may be coming at us just around the corner at ASH in a few weeks and clinical trials are advancing to Phase 3 with the monoclonal antibodies so we may just see some game changers over the next 12 to 18 months...hang in there! Good things yet to come! :)

    ReplyDelete
    Replies
    1. JulieNovember 20, 2013

      Thank you for the encouraging words Steve! Do you have a blog?

      Delete
    2. UnknownNovember 21, 2013

      Nah....haven't started a blog yet, Julie. Have considered it but....finding the time? Have spent most of last 4 years posting at the acor.org MM listerv and at Pat Killingsworth's blog. But I do like to make the rounds to folks who do maintain blogs and add my 'couple of coppers' worth now and then. :)

      Delete
  3. JulieNovember 20, 2013

    Thank you all for your supportive comments, and so sorry to those that have let me know they have difficulty posting here :( I do love and appreciate your feedback, as I never know who's reading my silly ramblings ! I am testing out posting... here goes :)

    ReplyDelete
  4. AnonymousNovember 23, 2013

    Hi Julie! How cool that your little blue bug is from NC!! I don't have a blog - am related to the "multiple myeloma for dummies" crew. Found your blog through them and have been following for quite a while. Keeping you in my prayers. :)

    ReplyDelete
  5. ClaudiaDecember 22, 2013

    That is so much!!!! The best thing about this all is how well you know your body and how to use each and every medication!!!!

    ReplyDelete

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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.