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.
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.
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!
We laughed about my complex, crocked veins
So here's a recap of my important stats:
(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
4/17/16 717 251 < 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
11/13/16 3260 152 < 19
Normal = 0 ... Zero
July = 1.26
Aug = 1.01
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
Nov = 3.20
So my IgA is high
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".