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

Wednesday, November 16, 2016

7x High end of Normal! You've got to be Kidding me Myeloma!

Hello 11.16.16

Well I gave you a hint on my previous (surprise, out of the 6's theme) post, that Myeloma is really challenging my cellular self. Yikes, what the heck Myeloma, you've been instructed to get the heck out of my life and you're not listening very well. I never said I specialize in challenges and I'm tired of all these challenges.

But seriously, I shouldn't be surprised at all. Here I am nearing my 7 year diagnosis anniversary. I have long ago, AND HAPPILY, passed several mortality milestones, been through more cycles of treatment than I can count now (but will one day!), been through Dexamethasone with all of these: Revlimid, Cytoxan, Melphalan, Revlimid (maintenance), Revlimid (out of remission), Kyprolis and now, I get it, I accept it, it's time for a change. Like it or not, I have to accept, have to accept, have to accept MYELOMA IS AN INCURABLE CANCER and I cannot wish it away, will it away, or treat it away. I must must must accept that Myeloma and I are life time buddies, and I and my treatments have to be stronger than Myeloma's cellular mutations.  Change and changes are a given. Treating and surviving Myeloma, my mission.


So here goes. Bye Bye Kyprolis, Hello Pomalyst.

Yep, my numbers speak volumes. They've been creeping up, now jumping up. Time to change. I have to lose my fear of switching treatment types. I have to lose my wishful thinking that one type of treatment will last "forever". I have to accept each treatment will not be effective indefinitely. Staying alive and killing off Myeloma cells is my goal. I try to understand all this complex cellular mutational stuff going on in my body, but I'll leave that to the brilliant medical science researchers, working nonstop to find ways to ambush cancer cells. Goodbye IV chemo lab infusions, hello pill form chemo once again.

Here's my new life:
I see the crazy ESCALATION of my blood test numbers. My IgA is currently over 7 times the HIGH end of normal. My M Protein is in the 2's (normal is zero). Waiting to see how high my numbers go, hoping to see them back off and retreat, is down right STUPID. In the past, my stats did tend to roller coaster up and down, and be somewhat stable, even when increasing. Now, it's pure and simple escalation. I have to accept my "worsening status". Wishing, hoping for a different outcome, will not change what is happening on a microbiological, cellular level. I have to accept Myeloma meds only work for a limited time period, then we become "Refractory", not responding to that particular treatment. I just keep living in a "dream world" that I'm different, and I really don't have cancer. I have to accept my status.

So yesterday, at my local oncology appointment, I accepted my status and agreed to kiss Kyprolis good bye and welcome Pomalyst into my life. My Dr wanted to start me at the highest dose (4mg), and I suggested a middle dose (2mg), so we laughed and agreed on 3mg. Yes, I'm not brave at switching treatments, as I just HATE HATE HATE SIDE EFFECTS. I just want my life back, but that's a stupid, archaic dream, so I must move forward! Cancer and cancer treatments go hand in hand with side effects, so who am I kidding! Treat, Treat, Treat to INFINITY Julie!

But this cccccchange really hit me on several levels! I suddenly had mixed emotions with the idea of going from IV chemo lab treatments, back to pill form chemo. Crazy how the chemo lab had become my "comfort zone" now.

So...
1- ugh, does this mean more GI drama? Kyprolis was kinder to my GI system, and I didn't have the extreme volcanic surprise keep me home diarrhea most every day that Revlimid did to me. Sure I had GI issues several times a week, but for a year now, I wasn't living on Imodium daily. Sure I had many other physical side effects, but over the year, I got "used to" the Kyprolis "routine".
2- ugh, what will be the new side effects of Pomalyst and when will they kick in?
3- how will it be, being back on pill treatment 21 days on, with no Dex steroid break
4- what surprises will Pomalyst surprise me with?
5- Yes, I actually became accustomed being treated/monitored weekly by the chemo/pharma lab staff. That gave me a greater sense of "control" over myeloma. Yes all the weekly pre chemo blood tests were slightly annoying, but I had a sense of security, knowing what my body was doing, weekly.



But you know what hit me the MOST about this cccccchange? The fact that I WILL MISS SEEING MY AMAZING CHEMO LAB and CHEMO PHARMACY STAFF, 2 days a week, 3 weeks per month. They have become my "other office", my friends, my buddies, my pals, an extension of my support system. Caring, healing, smart, fun people. My life really became centered around going for IV treatments!

Just LOVE this crew, and the others not in the picture

No doubt when I began IV Kyprolis infusions a year ago, yes a year ago November 2015, I had no idea what was in store for me, and I had no idea how this 2x per week visit would so affect my life. Yes, I was "scared" at first. Then it became "routine". Then I actually looked forward to seeing my "caring, healing friends". I looked forward to meeting other patients. I looked forward to checking in with my friends at the reception desk. I looked forward to checking in with the amazing Pharma staff. I felt a comfort and security, knowing I was being monitored weekly. Weekly chemo lab treatments made me feel like I was still connected to the "world".

Aren't they adorable! 

We developed friendships. Learned about each other's families and lives. I became known as the "chemo counselor". The staff introduced me to other patients that needed support. I made cancer-comrade friends with "the regulars". It was surreal. Here we all are, suffering and challenged by our respective diagnoses, treatment types, personal challenges, fears and losses. We looked forward to seeing familiar faces in the chemo chairs. We shared our treatment and side effect "war stories". It's a horrible, yet beautiful experience. Life is raw and real in the chemo lab.

Working so hard for us!

I was always surprised when I met other Myeloma patients. Often it was overhearing familiar medications: Dexamethasone, Velcade, Kyprolis, Cytoxan, Neupogen,etc, or someone mentioning prep steps for their Stem Cell Transplant. We would overhear each other's all to familiar myeloma conversations. We would make eye contact, smile, nod, then make our way over to meet up. I began to feel like the "old timer veteran" there. Most were new to treatments, scared, with so many questions. Too many recently diagnosed, and concerned with next steps, or suffering from horrible side effects of the meds or awful myeloma related bone issues, anemia or low platelets, recovering from surgeries, etc. Many were surprised and encouraged by my almost 7 year survival. I began to be more "wowed" by my almost 7 year survival. The connection was immediate, to this "club" we never wanted to join. I will sincerely miss all this, as crazy as it sounds.

Me and Sylvia-
We laughed about my complex, crocked veins

Goodbye Kyprolis infusions

But I won't miss the IV needle sticks, even though they weren't that awful for me. Truly it's amazing what one can get used to. I'd witness the new patients so nervous, light headed, full of anxiety, regarding IV's. The sweet staff was so caring about this, and did everything they could to reassure and calm patient's concerns. I've never been a nervous or anxious person. I am very pragmatic and accepting of my circumstances. Cancer leaves you little options. Treat or remain sick. Treat or die. I am very realistic about my diagnosis. I've known from day one, Myeloma is INCURABLE. I was ready to treat from day one. I just want to feel ok. I only fear extreme GI side effects. Needles never scared me. IV sticks don't scare me. Done in seconds. I watch and marvel at the Nurses accuracy. I watch and marvel at the curative poison going in my veins. I watch and marvel about all went on about me in this chemo lab. So many near death stories, to renewed hope. Awful side effects, to healing health. The Nursing and Pharmacy staff so caring. Running about, attending to all of us. Incessant beeping of the IV machines. Semi needy patients to really sick patients. All the staff, so accommodating, so knowledgeable, so caring.

 Goodbye Kyprolis, goodbye helping bags of hydration

Goodbye IV sticks, 2x per week

Goodbye needle sticks in creative places 
when my veins were tired

Goodbye needle sticks that looked scary

Goodbye bruises from angry needle sticks
 
Goodbye Kyprolis...
You worked wonders fast, then tapered off, 
then myeloma tricked you, mutated you, made you ineffective
But you gave me a whole year, and I am so grateful for that.

So here's a recap of my important stats:
(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 20MG
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
BEGIN 40MG DEX STEROIDS 
10/12/16             2050         166         < 19
11/10/16             2820         160         < 19
11/13/16             3260         152         < 19
Goodbye Kyprolis, we had some great months together! But wow, that's quite a jump in one month, and those IgA numbers in the 2000's are pretty scary to me. Haven't been that high since initial treatment in early 2010!

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
Oct  = 1.96
Nov = 2.22 (how symbolic is this, my upcoming Bday is the 22nd!)
Nov = 3.20

So my IgA is high
My M Protein is high
My Beta 2 Microglobulin is high (see previous post)

I'm honestly a bit scared right now, and writing this post has not been the usual "fun", whoo hoo, I'm a strong cancer patient, post. I am feeling a little worried about ME vs MYELOMA, a little freaked out that I have been through Revlimid 3x, Cytoxan 1x, Melphalan 1x, Kyprolis 1x, (not to mention being on Dex steroids at the HIGH 40mg dose now) and now on to Pomalyst. I know this is "normal" for incurable Myeloma, but each change rocks my foundation, and shoves my reality in my face. I'm sad, melancholy, and a bit wary, scary. But it is what it is, and my motto for so many things has always been: "You can't control the things you can't control, so analyze it, understand it, come to terms with it, and move forward". 

But this numbers game sure has too many coincidences: 
Coming up on my 7 year diagnosis anniversary, with my IgA being over 7 times the high end of normal is kinda freaky.
My M Protein of 2.22 for November, my birthday month, has my Bday number in it: 22
You're just so funny Myeloma... can we have this joke be over now please!



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

 

2 comments:

  1. Good luck with the Pom Julie. You seem to respond to treatment, which makes it likely this new drug will work. Continue to be positive and enjoy the upcoming holidays. Happy Birthday!

    ReplyDelete
    Replies
    1. Thank you so much for checking in John and commenting. Yes, I am a little concerned, as I just posted my update on my crazy allergic reax to Pom. Crazy how MM mutates and outsmarts our meds. I am hoping my body makes Pom my friend and pummels MM. Hoping you are well and I will check your blog. Happy Holidays to you and your family! Stay well John! Thank you!

      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.