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

Monday, September 26, 2016

Double the Roids.. Double the Fun.. Double the Crash!

Hello 9.26.16
Thank you everyone for always checking in and caring about my life and Myeloma status!

Roid Rage coming:
Oh yes, here we go again. So at my last Dr appt, we discussed the upward upward trend of my numbers. My Dr suggested we try upping my Dex steroids from 20mg to 40mg per week. Here we goooooo! So rather than doing 10mg + 10mg on my Monday, Tuesday Kyprolis infusion days, I will now do 20mg + 20mg on my Kyprolis infusion days. WhooHoo... hellooooo mega steroids again. Back when I was first treated (January 2010), I started on 40mg per week. Then I had a horrible awful allergic skin rash reaction to Revlimid, so we upped my Dex steroids to 40mg, 4 days on, 4 days off for about 5 months. Whoa! can you imagine that?! Fortunately, my Myeloma hates Dex steroids, so my numbers came down fast back then. Hoping for a similar reaction now.

Helloooo 40mg per week now!

So not the news I wanted hear at my last Dr appointment:
Booooo on you Myeloma. I know I say it over and over again ad nauseum, but I really thought I would be "just fine" and Myeloma would stay out of my life for a long time, or I would get a lot of mileage out of each type of medication I was on. Guess I was spoiled by the on-going success I had with Revlimid. The combination of  Dex and Rev really brought my numbers down during initial treatment January - June 2010 and my subsequent (post Stem Cell Transplant) Rev maintenance for 18 months. When I came out of remission summer 2013, Revlimid again to the rescue. We started with Rev 5mg for about 6 months, then upped to 10mg for about 9 months, then alternated 10mg with 15mg until we switched to Kyprolis November 2015.

Thinking about this, I had many many years of roller-coaster success with Revlimd. No doubt Rev challenged me like none other! Oh boy did Rev challenge me... and gave me GI reactions that were horrendous and hilarious all at once- (see my previous posts chronicling my many ridiculous GI "close calls" and "near disasters")! So I really thought I would have "years" of similar success with Kyprolis. Truly I am surprised my body is burning through it's effectiveness so fast, but actually, I shouldn't be surprised. This is Myeloma's (incurable) reality. Crazy how powerful cancer cells are.

Here's my numbers reality from my most recent labs:
Note how my IgA jumped 570 points in just a month. I'm 5x the high end of normal now. Booooo!! Haven't seen this level since a few months into initial treatment in 2010. Yes, it's a wake up call to me...
Similarly, my M Protein jumped .67 points in one month. Since zero (0) is normal, and I am now in the 2's, that's significant. Haven't been there since early 2010, right after diagnosis. Yes, all this is a wake up call...

I'm IgA Myeloma type, so we follow my IgA and M Protein for my status:

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

Date                      IgA        IgG         IgM 
8/20/15                1530       258         < 18
9/13/15                1770       268         < 18
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
6/23/16               1140         267         < 17
7/21/16               1180         247         < 17
8/17/16               1540         238         < 17
9/15/16               2110         212         < 19
Up it went...way up :(

M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0 ... Zero

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 That's a BIG upward Trend in just one month!
June = 1.06
July =  1.01 
Aug =  1.58
Sept = 2.19
Up again... way up :(

The new plan: Doubling Dexamethasone
Here I goooo. Here come's the "bi polar", waaaaay up high for 2 days, then the harsh crash down for 3 to 4 days. It's such a crazy way to live, and I will NEVER ever get used to it. I like steady and mellow, not super highs and super lows, with all kinds of annoying physiological side effects: Nausea, diarrhea, swelling, headaches, extreme fatigue and exhaustion, dizziness, metal mouth, extreme thirst, body aches, neuropathy, sleeplessness- to too sleepy, and just the overall yucky yuck feelings. It's like having the flu for 3-4 days EVERY FRIKN WEEK OF YOUR LIFE.  And should I mention the crazy Psychological effects... where I am full of love, hope, humor and non stop conversation for 48 hours, then boom, the crash, and I want to scream out my frustration and "anger" at my situation and "punch" anyone that pushes my buttons! But I should shut up, as so many Myeloma patients have it much worse than me.. Counting my blessings always!

 
Aren't we cute! 
Crazy how I can look ok on the outside,
and be such a sickie on the inside...


Yes, I've never really fully wrapped my head around "being a cancer patient". It just doesn't fit my personality. On "good days", I try doing a fun event. On "crash days"... well you know where I am. I just feel so yucky ucky. But I still FORCE myself to do things no matter what, when energy and my GI allows me, as I realize more and more.. I have to LIVE LIFE EVERYDAY TO "MY" FULLEST.

So a while ago, I wrote a spontaneous (short lol) list of some of the ridiculous things I do, that a cancer patient really shouldn't do. But then again, I read blogs and articles of my peers, and they're out bouncing around too, trying to make the most of the situation and "the timeline" we don't know. My life and activities seem mild compared to so many of my Myeloma peers!

Here's my list of Funny Things I Do (and probably shouldn't do) as a Cancer Patient:

Take "care of" our 19yr old cat in Diapers. Yes I glove up!
Held my chickens, and wound up with a Badly Infected Finger (see below)!
Raking horse poop is my exercise-
But I wonder if breathing horse corral dust is smart?
Breathing horse Fly Spray (maybe that gave me Myeloma?)
Remember my rescued Sparrows, changing their cages often.
Changing our Box Turtle's water (yes I wash thoroughly always!)
Cat. Litter. Boxes. We have 3 (exclusively indoor) rescued kitties. Window open, hold breath!
3 (rescued) Dogs. And now "grandparents" to our daughter's new shelter doggie Nala.
1 Betta Fish. I change the water frequently. Yes I wash thoroughly!
Drive my vintage VW Bug.. Oh those 1970's exhaust fumes... fueling Myeloma??
Ranch chores I shouldn't do. Ouch. Shouldn't have done "that"..ouch!
I try to be normal and plan events... but I'm sooo fatigued.
Cancel is my middle name now.
Still say YES to things as if I was well, then have to cancel.
Taking care of everyone else. Yes always Counselor Julie!
Tired, tired, tired, but I don't nap or rest much. Even on awful crash days.
I push myself too much, everyday, in every aspect..
And of course being Mom and Wife.. that role will happily never end!
And that's just a sample of my busy ridiculousness!


So I wound up with a weird cut on my right hand ring finger:
Not sure how I did it. From the animals or plants or something that cut my cuticle area. It became inflamed and ouchy, but I thought it would "just go away". I always healed on my own. It got worse. It didn't heal. It had puss and hurt. I wash my hands thousands a times a day. Thought that would cure it. I sprayed it with alcohol zillions of times a day. But I went on with all my animal chores and animal fun. I can't not take care of our zoo! I wear gloves for animal chores... well most of the time.. Cut it again. Hit it again. Scratched it again. More and new cooties invaded.. Have no idea why that area became such an impact point for me. Must be because I am right hand dominant. I held one of our new chickens. Her foot slipped and of course, her nail went right into that spot. Right there! Cut it again. Tore it. Ouch! It got redder and more inflamed. It hurt. I tried to squeeze the pus out. It seemed like it wanted to heal. It really looked gross. Oh, it will be better tomorrow I convinced myself. Wasn't really healing. Tried Hydrogen Peroxide. That seemed to help a bit. Fizzled and cooked it lol. Everyone said to have it checked and get on antibiotics. I thought I would heal on my own. I always did. Ooopps... that was when I had a "normal" immune system, stupid! So I showed it to my Dr at my last appointment... You know, the appointment where I also got bad Myeloma news. I almost forgot to show her. She said, "ooohhh, that looks bad, let's get you on antibiotics!... any allergies?" ... "Yes, all the Penicillin types and Sulfa types" I replied, as she checked my chart and confirmed. Hello Doxycycline pills for a week. Nope, make that 2 weeks.. my chemo pharmacist confirmed today, when I was in the chemo lab. I know, I'm so stubborn and in such denial of my critical health situation. I just think it's all going to go away, I'll get back to my old normal, and my immune system will kick in. Ha! How do you spell STUPID? Me!  Here's the pictures. It's like there's a little hole in my nail from the infection eating away.. I know.. STUPID!

This was after several weeks of trying to heal on my own-
Before antibiotics

Today, much better, right!
Thank you Doxycycline...
Or was it my immune system (lol)

Ok, this post wound up longer than I'd planned. I have another story I will tell next time about my Dental visit that wasn't, due to my compromised immune system. Oh, did I mention, my WBCs, RBCs, ANC, etc, are all well below normal. So what's new right? Not Neutropenic yet, and hope to not be... altho, me and Neupogen got along just dandy back in 2010!

Thanks for checking in and reading my crazy tale. If you're a Myeloma patient, I hope my stories inspire you and don't worry you too much. As "bad" as I'm doing, I'm "relatively ok" and super proud that I'm nearing my 7 year diagnosis/survival anniversary!! Whoo Hoo! 7 years in December!
If you're one of my "healthy" friends, colleagues, family.. stay that way please, and enjoy my stories and rants.

Lastly, here are some great reads for anyone, cancer patient or not. I really enjoy the posts on The Myeloma Crowd, The Mighty, The Myeloma Beacon, The MMRF, The IMF and all the others I have linked to the right here and below my blog posts. Here are some individually linked articles too:

http://www.myelomacrowd.org/myeloma-101-dex/

http://www.myelomacrowd.org/myeloma-101-more-on-protease-inhibitors-velcade-kyprolis-ninlaro-how-they-help-combat-myeloma/

http://www.myelomacrowd.org/phase-3-studies-show-kyprolis-carfilzomib-extends-progression-free-survival-relapsedrefractory-myeloma/

https://www.facebook.com/ChronicIllnessOnThemighty/

https://themighty.com/2016/08/what-its-like-wearing-a-surgical-mask-in-public/

https://themighty.com/2016/08/what-i-didnt-know-would-happen-when-i-became-chronically-ill/

https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/

All these groups have wonderful Facebook groups and posts too! Thank goodness there is so much wonderful information out there! Not to mention all the research and new meds in the pipeline for us!

Until next time...

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


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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 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.