Living in Relapse – January 31 2013

First, a little history – I was diagnosed with high risk monoclonal IgG Kappa multiple myeloma (4:14, 1q21 and other cytogenic changes) when I was 60 years old on 24 May 2011. Aside from anemia and 80% plasma cells in my bone marrow, I was in pretty good shape with normal kidney function and no lytic bone lesions. I was still pretty active, walking the dog in the mountains daily and doing anything I wanted – I was just SLOWER. I had recently turned 60 years old and I thought needing a daily nap might be just a part of aging.

I was prepared for an autologous stem cell transplant (ASCT) with both Velcade and Revlimid which didn’t quite get me to remission, so I required a 4-day hospitalization for VDT-PACE (Velcade, Dex, Thalidomide, Cisplatin, Adriamycin, Cytoxan and Etoposide) prior to donating my stem cells for the transplant which I had on 13 Sept 2011. After my transplant, I had TERRIBLE gastritis for months and developed a blood clot in my heart and it wasn’t as “easy” as it could have been…yet, I kept smiling.

I was so hopeful that I would achieve remission and 50 days post-ASCT my bone marrow did reflect remisson with an M-Spike of 0.1. Immediately, went on weekly maintenance Velcade and Revlimid, which didn’t feel like remission since I had to go for treatment twice a week and it wasn’t long before I relapsed in Feb 2012. Back to 60% plasma cells in my bone marrow and my high risk cytogenetic changes 4:14 and 1q21 persisted.

I was re-admitted for 2 courses of VD-PACE (Velcade, Dex, Cisplatin, Adriamycin, Cytoxan and Etoposide) and prepared for a second ASCT (autologous stem cell transplant), which I had on 18 May 2012. I never achieved remission afterwards and have been living in relapse ever since.

After my failed 2nd ASCT, I’ve been treated unsuccessfully with Zolinza which did nothing for my myeloma and gave my kidneys a workout. My bone marrow plasma cell percentage went up to 60%.

Being run down from the 2 failed autologous stem cell transplants and no immunoglobulins,  it seems that I react to chemotherapy more deeply than most.

I was started on Carfilzomib, Dex, and Revlimid in Oct 2012.  My bone marrow plasma cells went down to 40% with persistent cytogenetic changes by the end Dec 2012. Added Cytoxan to my chemo plan and my counts plummeted, so that’s in a holding pattern for now.

In addition, I have non-secretory or hypo-secretory myeloma, which means the usual myeloma SPEP (serum protein electrophoresis) blood tests are not reflective of my bone marrow plasma cell percentages. This requires that I be followed by frequent bone marrow biopsies – I’ve had 9 in 19 months. Eight of the 9 bone marrow biopsies have been done without conscious sedation and I have finally convinced the powers to be that I REQUIRE conscious sedation for any future bone marrow biopsies.  Yippee.

So, back to living in relapse!  I’m been doing it for a year now. It is hard knowing each day that you have relapsed myeloma – constantly wondering how your bone marrow is doing, trying to stay off the internet surfing myeloma sites and blogs, yet worrying you might miss some new treatment for high risk myeloma…and simply wondering how much time I might have left. My oncologist already told me that I’ve lived longer than might be expected with my cytogenetic changes, but he added, no one knows. I’m lucky as the approval of new myeloma drugs seem to be coming along just as I need them. So, I keep smiling.

My continuing, weekly chemotherapy keeps me tired, but I try to keep up with my daily activities. I’m best after a dex day. Unlike many, I like dex – seems to give me energy and clarity of thinking that I don’t have otherwise. Unfortunately, the effect does not last.

I worry about getting something from others and I am good about wearing a mask around groups of people and always washing my hands. I have not been sick at all.  I have never been re-hospitalized for any infection. My kidney function returned to normal once all the Zolinza passed through my system and I’m careful to drink plenty of water each day. If I’m going to die, I want it to be of myeloma and not some dumb infection.

I’ve been in a rush to get my family genealogy organized and completed before my time is up. This project is huge and I enjoy it so much. While on the other hand, organizing my medical deductions for my 2012 Taxes is not much fun at all.

Walking my dog, Kemmer, is important to me and I try to do this daily. I like to shovel snow and I’ve been able to do some of that too. I take care of my own house and get my own meals. Trying to fight fatigue with activity, which helps. But, to be honest, right now, the thing I’m best at is “being one with my sofa” working on my laptop and watching television (I’ll miss football and I love golf)…so unlike my active pre-myeloma self.

I have no desire to travel out of Idaho, but do so for my transplant follow-up visits in Colorado. Plus, these trips give me a chance to visit with my former work colleagues. I love when my sister visits in Idaho and I hope she’ll come again soon.

I miss going to the Mackay School to volunteer and watch sporting events. If my Absolute Neutrophil Count (ANC) ever comes up near normal, I’ll return to the school, because I love the children. I’ve tried to keep up my Mackay Food Bank volunteer duties, but I let my Presidency in the South Custer Historical Society go along with my Secretary duties in the Mackay Women’s Club. I keep my Mackay Idaho 83251 blog going http://mackayidaho1.blogspot.com and my jm’s Adventure With Multiple Myeloma blog updated http://jmmultiplemyeloma.blogspot.com 

My mood is good. I don’t suffer from depression. I go to town each day and get the mail for my 92 year-old father. During this trip, I always visit with someone at the Post Office and I like that! Friends have been good about watching Kemmer while I need to away from Mackay. Driving 135 miles each way for my weekly 2 days of chemo is almost relaxing depending on the weather. I like to drive and it is a good thing since I spent 18,701 miles in the car during 2012 JUST for MEDICAL CARE. I’m retired with a monthly income and I have excellent heath insurance, so money has not been an issue.

So, I continue to live in relapse and for the most part – I’m doing a million!