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Sunday, October 28, 2018

Yes I Got Sick, Then This Wonderful Event Happened, and Adding a (New to Me), Vintage Chemo

Hello 10.28.18

It's Goodbye October, Hello November!

Inching closer to my 9 year Myeloma Diagnosis Anniversary! Wow! Becoming more and more surreal, unbelievable, crazy, amazing that I am still here!.

I just can't believe that 9 years ago this time Myeloma was RAGING inside of me, and I didn't know it yet.... My IGA was close to 5800 (normal = 70-400). My M Protein was over 4.3 (normal = 0) and my first Bone Marrow Biopsy showed 70% cancerous myeloma plasma cells! And here I am to talk about it, almost 9 years later, having survived more rounds chemo than I can count, a Stem Cell Transplant, and all the 9 years of side effects I have endured! But I'll reminisce about all of this soon...

Because, since my last post, the Adventures of Julie in Myelomaville continue :))

1- Yes I bit the dust and got sick, but thankfully only a lousy head cold. Seriously, how amazing is that! I go on a Cruise with 2000-3000+ humans, and only get a lousy head cold! Guess those magical Zarxio, Neupogen WBC immune system building injections gave me some back up power to fight off all the potential nasty cooties out to get me! I am very cautious and careful though, and incessantly wash and sanitize my hands, myself, those around me, my living space, etc. I tried very hard to not let anyone touch me, hug me, and I never shake hands, I use antibacterial wipes to touch most anything public, and I brought my Mint Isopropyl Alcohol spray to sanitize and spray anything and everything and everyone! My finger nails even turned a lovely light green from the the Wintergreen color LOL. Wow, I sound like a freak... but it worked... I did not get any deadly viruses, bacterial yuckies or pneumonia, etc...

2- Next I agreed to begin the Vintage chemo Cytoxan with my Velcade and Dex steroids... only I am going to Cheat... ssshhhh don't tell my Dr yet, but no way am I downing 8 frikn Cytoxan pills at one time! I asked her for a lower dose, and she was kind enough to lower the standard of 10 Cytoxan pills to 8, but after I picked up the Rx, and saw them, and began to visualize ingesting all of them at once!... I'm Helllllllooooo, Noooooo, I'm not going to put all those in me at once, risking a nasty GI backlash! I know, I know, I'm a Cancer Patient with Incurable High Risk Myeloma, and I should be on board for high dose- kill off those super strong myeloma cells trying to kill me!! Well, yes, but No! At this point in my life, and treatment.... Quality of Life, and lessening the chance of feeling gross and sick, is my main priority! Yes my myeloma is 4 Times the High End of Normal right now... but sorry, I just can't stand the idea of getting grossly GI sick. See way baaaaaack in June 2010 I had "that reaction" to IV Cytoxan, and uuggghhhh, nope, no thank you... not again, if possible. So Tomorrow Night, Oct 29, after taking 40mg Dex steroids in the morning, my weekly Velcade shot in the afternoon, I will very tentatively, unbravely take 4, yes four of the 8 Cytoxan pills!

Hello pretty blue Cytoxan pills!
Blue just like my lil blue Bug...
Would you take 8 or 10 of these at a time?

I'm also armed with Zofran, but I don't think I'll "pregrame" with that just yet, as I'll be on the high dose, 40mg Dex steroids, and that should help with any nausea, right?? Suggestions please!!!, if you've done this combo, which most of the Myeloma patients have, early on! Why didn't I?? I was concerned about all the warnings from myeloma patients about BAD Neuropathy from Velcade, so I skipped over to Kyprolis, and never had the Cytoxan pills added in, as Kyprolis Dex worked for me for about 10 months, then Darzalex, Pomalyst, Dex worked for me for about 18 months, so here I am, going backwards to meds I skipped, before I'll do clinical trials, CAR T, etc. Yes, no matter how "bad" my situation becomes, Quality of Life is first and foremost to me... since what's the point of treating myeloma, if I'm so sick all the time, I'm not living. Isn't the point of treatment to give a cancer patient their life back??? I've been doing this for almost 9 years now, and for so many hours, days, weeks, months, etc, my life has been so limited by side effects, I learned that for me, the treatment has to make sense... kill the cancer cells, but let me see the sunshine too!

So after the cruise, and getting sick, the pressure was on to get well fast, as I had the honor of being selected as Opening Ceremony Speaker for the Doggie version of the American Cancer Society's Relay For Life. Yes, "Bark For Life" is a similar theme as Relay For Life, but the focus is Dogs as our companions, our "support animals", and how they help us emotionally and psychologically. Here's the event in pictures, and I will be back to narrate the details later, as so much has happened, I'm so exhausted :)) I've done this event for many years, but this year was super special, since they asked me to be Opening "Barker", Speaker, and my Team- Mutts For Myeloma, was the Grand Marshalls, leading the doggie walk! So fun, so cute, and such a happy, positive event! Go Team Mutts for Myeloma! 

I made these hand held signs for our Team members to carry

My Story
So much fun!

How adorable is this!
Special parking privileges!

There I am speaking
Sharing my Crazy Myeloma story

And we're off!
Mutts For Myeloma
Leading the Pack

Go Team Mutts For Myeloma!

How I did all this... I don't know
But 1 lil 4mg Dex steroid pill did help!

So sad
My hubby Jim is having such mobility issues
Best Son Ever Scott, pushing Jim for the Walk

Best pals ever!
Susan and our Hanna
Me and our crazy puppy Jack
And Daughter Alissa with her Nala

Super friend of Alissa
Kristy, and her adorable kiddies

Alissa and Susan
Jack, Nala, Hanna

David and Debbie with doggie Abby
So happy you could come!

Alissa
Jack, Nala, Hanna

Susan and Hanna

Scott's GF Ashley
with her adorable Pugs
Knuckles and Porschia

The Crazy Pack

Go Doggies enriching our lives!

Kathy's sweet Portia and Alissa's Hanna

Portia and Porschia!

Seriously!
How Lucky Am I!
This Is Why Quality of Life is so very important to me! I could not have done this event if I was feeling GI sick from chemo side effects. Been there, done that for so many years on Revlimid with "volcanic diarrhea". It was challenging enough with this event so early in the morning, as I never feel well in the early mornings! And I'm still challenged with all the bone, nerve, leg, muscle, etc pain from the myeloma tumors, plasmacytomas, lytic lesions, holes, etc, whatever the heck they are... so I took one 4mg Dex steroid late Friday night, so I would feel less pain, and also have the energy to get up early, function and be able to give my speech about my life, myeloma, and the importance of doggies, pets, animals in my life. It was a challenge to get me, my disabled hubby, and the 3 doggies all at the park by 8am! Thankfully my amazing family, and Team Mutts For Myeloma were there to help when we arrived. And did you see the pic of my reserved parking space? So Adorable! 

But later on that evening, I decided to do as my Drs and Nurses always say:.... "Go To ER! or Urgent Care! if you have Pain, Fever, etc... So I went, as the pain in my lower back, hips, pelvic area is erratically painful, with different type of pains all the time. So I thought it best to get an updated xray, as I've had a few crazy "slip, trip, ALMOST falls. Ever since my July fractured RIB, I've realized 9 years of crazy Ouchies, may have been other fractures, sprains, bruises, bone involved issues, that I ignored. So I went, was seen by a wonderful, thorough Dr, and the good news is... no new fractures, just all my myeloma plasmacytoma tumors, lytic lesions, etc affecting my nerves, muscles, etc.... Hmmmm ya think I should do the Radiation??? I think I should, as better to be ProActive, than ReActive, right!! And when that pain comes.... OMG... it's truly unbearable... especially since it's at night, when I've stopped moving around... Crazy stuff!

And I'm still laughing about the amount of Meds I'm needing to take to keep me ALIVE! Here's to Velcade, new Cytoxan, Dex steroids, Mepron/Atovaquone, Acyclovir... just to name a few LOL

Welcome to my life :))
40mg Dexamethasone steroids- 10 pills
400mg Cytoxan chemo- 8 pills
200mg Acyclovir- 1 pill
and other Vitamins, pain meds, Thyroid daily pill....

Hello weekly Velcade shots

1x or 2x per day...

Thank you for checking in, and caring about my myeloma story! Hoping you are doing well, and have figured out how to bring your blend of Quality of Life into your Life. It's different for all of us, and I just want to be able to feel less pain, less side effects, and be able to do a few social-family events here and there. LOL---- this October was of course and exception... I usually don't have all these activities at a time... well maybe I do... thinking back to some of my posts :))

Be well, stay well, and find that which gives you joy and purpose!




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2 comments:

  1. UnknownOctober 30, 2018

    Hi Julie. Glad you had no new breaks. This is Jewell. I told you last time I would let you know what happened at my next appointment. My Kappa light chains are on the move, so my doctor is raising my Revlimid back up to 25 mg - 21 days on 7 days off. Hate this. And adding 32 mg dex weekly. Ugh!! Hopefully this will work. If not he will add Darzalex or one that is similar. It is so weird because my blood work shows no monoclonal bands, but the pesky little Kappa is not cooperating. I am so glad that you got to enjoy the cruise and didn't get a nasty virus. Til next time.

    ReplyDelete
    Replies
    1. JulieNovember 03, 2018

      Hi Jewell :)) Thank you for your update! Wow, go you for being able to tolerate 25mg Rev! I never got beyond 10mg, 15mg alternating for the 21 days. I sure hope you do ok on this, and Rev doesn't give you too many lousy side effects. For me, with Rev, the main insane side effect, was the "volcanic lower GI surprises", and the extreme fatigue.

      So crazy how MM morphs differently for all of us, with you Kappa Light Chains, and me IGA and M Protein.
      Hoping this new option pummels those nasty MM cells for you asap!

      Thank you for following my story and letting me know how you are Jewell :)) xoxo

      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.