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Thursday, May 26, 2016

Up and Down the Myeloma Roller Coaster of Life!

**UPDATED** :)) Feeling a bit better now.

May 26 turned out to be a yucky blah crash side effect day, with icky GI unrest, and I'm in a no helium fog :(( Maybe I should abandon my symbolic posting on the 6's and post randomly when I have fire and pep? Have you noticed, when I'm on my Dex power surges, my blog posts have so much to say. Darn, I should have written on Mon or Tues. Oh well, that's my life of extremities!

Here we go... wheeeee... this fun picture, of a recent (very unusual) break week adventure, tells the story of my roller coaster myeloma life. I'm trying, really trying, to live my life, as fully as I can, while Myeloma works overtime ambushing me.

My life:
 A crazy unpredictable Roller Coaster
Just let go, go with the flow- I tell myself
Jerked this way, jerked that way,
Up Down, Up Down, Trending Up
We're really not in control, so just enjoy the ride!
 Yes I did this! 2x!
Buckle up, hang on. 
Hang on for dear life in so many ways.

Here's my status for May: 
Booo, my numbers are Up again. AGAIN! Up, Up, up the myeloma roller coaster I go... Seriously life, what's "up" with this! I honestly didn't expect this status. Get me off this crazy Myeloma roller coaster! I'll take the real ride any day!

So the other day at one of my Oncology Hematology appointments, I laughed as someone used the term "Trending" (in a serious context) with regard to my IgA and M Protein TRENDING UPWARDS. I'm Trending! I'm Trending! See there is a "funny side" to all of this craziness. You know, like "Trending" on social media?! hahaa! I'm Trending! Ok, maybe not so funny, but it gave me a good giggle. I'm Trending, but not in a good way...

Here's my Trending Upwards chart of my IgA and M Protein that I've been reposting each month for perspective on my situation and statistics:

My type of Myeloma "trends" via my IgA and M Protein levels:  
(I'm IgA myeloma) Immunoglobulins explanation 

Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230

Date                      IgA        IgG         IgM
10/18/15              1890       240         < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:
11/18/15              1440       233         < 18
12/2/15                862         230         < 18
12/30/15              482         262         < 18
1/18/16                426         228         < 18
1/27/16                432         221         < 18
2/10/16                551         227         < 18
2/28/16                635         226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17
5/15/16                808!!       232         < 17

M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0 

July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
BEGIN NEW KYPROLIS + DEX TREATMENT: 
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April =  Abnormal,  but M Protein value not detectable (On Dex)
May = .75 !Booo! That's a BIG upward Trend in just one month!

So process this with me...
I had remarkably successful results initially with Kyprolis + Dex, beginning Nov 2015. We then tried tapering off the Dex, seeing how I would do without it, as my Oncologist was concerned with my long term use of Dex- (2010 @ 40mg, 4 days on, 4 day off, for 5 months) and then beginning again late 2013 @ 20mg weekly, after coming out of Remission, Summer 2013.
Well going off Dex was a short lived experiment (mid Jan-mid Feb), as we've now learned that my type of myeloma runs scared from Dex steroids. I have good results when on Dex, so it looks like I always have to pair my MM meds with Dex. Ugh! Such a mixed blessing, as I love the Up Surge, but Hate the Crash! One thing I do, that I should probably not, is Not taking Dex on my Kyprolis break week. I am just so desperate for "normalcy", that I take a break from All meds during my break week. Ssshhhh, don't tell on me...


So here I've been, doing a relatively "new to me" treatment since Nov 2015, and it's only May 2016, and now my myeloma stats are Trending upwards rather quickly. Honestly, I'm surprised, shocked and really sad. I was very encouraged that this new treatment regimen would be my new "elixir" and keep myeloma suppressed for sometime, like Revlimid did. Yikes, what does this mean? Is my situation getting worse, faster now? Is this just an unusual anomaly? Is this just a temporary upward Trend? "Trending" on social media is cool, right? But Trending upwards with life altering "bad" cancer stats is not so cool.

Granted my IgA and M Protein is no where near where it was at diagnosis, Dec 2009, the upward current trend is quite concerning. My local Oncol/Hema and my SCT specialist are both encouraging me to UP the Kyprolis dose and/or add another medication. Guess my response to that???
Nooooooooooo, not yet!!! I have a life I want to live! My side effects are already so disabling. I am already so limited by myeloma and treatment side effects. Noooo, this can't be. I have plans for June! 2 weddings. Nooo way, I can't increase my dose! Not now. Ironically, I was even planning to SKIP a few treatment weeks, just so I could ensure I would be ok for the wedding weekends. Dang you Myeloma, you really mess up my life, my fun and my plans. I hardly do ANYTHING as it is, and I now have to process this curve in the unwanted myeloma road.


Up Down, Up Down, Up Down goes Myeloma- It is a LifeStyle
Sick, Well, Sick, Well, Sick- goes the side effects..
Good Days, Bad Days, Good Days, Bad Days- ridiculous way to live..

These are the things I ponder all the time: 
Higher Dose medications vs Quality of Life
Little trips, fun things, stay the course. Or up treatment options and up side effects?
Preserve my organs for the long term with lower dose meds vs numbers increasing vs a higher dose increase? What to do? What to do? I want to live my life, not just treat cancer...

If I had been a "sickie" all my life prior to Dx, this absurd current lifestyle may have not been so shocking to me, but I am just so frustrated with illness controlling my life. I was always so active and well. Truly, myeloma limits my life so much. I marvel at all the other people I know and follow that appear to have "relatively normal" lives. How do they do it? How can they travel? Do marathons, work? Be around the public, and sweet grandkids and kids who are like "Petri-dishes" of germs! Must be the difference between IgA and the other types of myeloma?! My immune system is particularly hard hit, vs others who are horribly impacted in their bones... Both are awful! But forward I go, one day at a time, processing processing all of this, all the time...

Here's a wonderful video that summarizes my life in so many ways. There are so many of us that "appear ok on the outside", but are really quite sick on the inside with chronic incurable illnesses: Pretty on the Outside, sick on the Inside


So on the days I manage to feel ok, on those few days I can leave my house, whether on my chemo break week, or a day here, a day there, an hour here, an hour there... I WILL ENJOY MY LIFE!  Here's proof of that: 


 Something the girls said was so funny!
I'm having theee BEST laugh here!

Best Time Ever!

Love you Kristin!

Love you Jesse!

Love you Wendy!

For just a few hours, I almost felt "normal"
Love them!
Off we go
3 hilarious pals
and 2 disabled sickies
We had a blast!

Yep!

Some interesting links for you:

Single infusion Kyprolis at Higher dose 

Are Stem Cell Transplants Still a Preferred Treatment For Myeloma? A Study Says...

Ha! Not only me writing about the Myeloma Roller Coaster:
my-myeloma-cycle-treatment-recovery-living-again-repeat/


Thanks for checking in and caring! 
I really appreciate your comments
and knowing I am still making a difference in the world. 

Until next time-
 Living the Myeloma Roller Coaster of Life...while "Trending"! :)) 



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

 

2 comments:

  1. That's a tough break that you're trending upwards. maybe they can increase the dose of dex. Or What about switching to Darzalex???
    I'm hoping things improve for you. BTW, very funny post. You have a great sense of humor...

    ReplyDelete
    Replies
    1. Aww, thanks for enjoying my posts Christina. I hope I never lose my sense of humor. Yes, many medication options out there now, but like 2015, I'm hesitant to switch. I'll stay the course for a while and see how it goes. Ugh, just so tiring. Hope all is great with you. I'll check your posts asap! xoxo

      Delete

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.