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!