San Jose, CA; [E-MAIL]
1949 / Class of ’95 / Type: IgG Kappa light chain / Updated: 8/13
In January of 1995, I had a terrible backache, which eventually took me to an orthopedic doctor. (I know what you’re thinking…“MM often starts with a backache” …but keep reading for my “surprise”.) At 45 years young, my back hurt so much that I was bent over and my doctor initially required 3 weeks of bed rest, which honestly did not help very much. We took x-rays and did MRI’s and nothing beyond normal disk compression showed up. Next we were about to proceed with a mylogram where they inject dye down your back to get the best possible view. This test requires a blood test, which was done on a Thursday in preparation for the mylogram the following week. Well, during the interim weekend, all of sudden my back stopped hurting and felt completely normal. And my back has never hurt since!
Before the scheduled mylogram, I went to my doctor and said “Doc, we’re cured so we can skip the mylogram.” That’s when he shocked me by telling me that the blood tests revealed a cancer called Multiple Myeloma. Still in a state of disbelief, I only asked him two questions: 1) How do I spell “Myeloma” (thinking I needed to research this animal), and 2) What’s Single Myeloma (figuring perhaps I didn’t have it so bad since I felt just fine). I grew up healthy, never spent time in a hospital, never had a major illness, and now I had a form of cancer I had never heard of. That was April’95.
A local oncologist was recommended and he set up a Bone Marrow Aspirate/Biopsy to confirm the MM, at which point I learned that my IgG was about 8000 and my beta2 factor was over 5, both putting me at Stage IIIA (no kidney involvement) and indicating treatment. Starting May’95, I began 4 monthly chemotherapy (VAD) treatments which also provided me with time to research MM treatment options and specialists. My objective to become as educated about this disease as possible and locate a place with lots of MM experience. This led to me to the Arkansas Cancer Research Center (ACRC), which was a long ways from my family and friends in Northern California.
I first visited ACRC June’95 when they ran a barrage of tests (MRI, Bone Density, X-rays, Bone Marrow Biopsy, EKG, so many more) in order to establish their base line and make treatment recommendations. My own viewpoint, given my staging, was to hit it hard and early (a viewpoint I might reconsider today given other treatment options and my own education). After considering trade-offs between transplants autologous (“auto” using my own stem cells) and allogeneic (“allo” using donor stem cells), I decided to have the “safer” tandem auto transplant in conjunction with one of the stem cell harvest purging technologies under clinical trial from Systemix. However, just before my harvest, the Systemix trial resulted in a death and Dr. Barlogie at ACRC told me that the trial was no longer available. So in 1996 I had a normal stem cell harvest (Jan) followed by an initial auto transplant (Feb) and a second auto transplant (Jun), each of these events being approximately a 3-week stay in Arkansas, where 90% of the time I was an out-patient.
I actually achieved a nearly full remission for my VAD treatments and a complete remission from my tandem auto transplants. Unfortunately, the remission only lasted about 18 mos and by early ’98 I was seeking other treatments. My IgG was back up to over 8000 and my plasma percentage was above 80%. Under ACRC’s direction, I was entered into the initial Thalidomide trial but after 3 months at 200mg-800mg/day, I was non-responsive. We tried chemo regimens of CDEP and Dex-only but nothing helped, and now I was requiring blood transfusions every couple of weeks.
Finally, on Nov 12 ’98 (my birthday), I bit the bullet and ACRC performed an allo transplant with my compatible (6 for 6) sister. I was in the hospital being monitored very closely till mid-Dec, at which time I became an out-patient for about 10 days. ACRC agreed to let Stanford (my local hospital) monitor my follow-up treatment. For the next 3 years I encountered Graft-Versus-Host-Disease (GVDH) with liver and kidney functions and well as my eyes but all have generally responded to immunosupressent medications.
In the year 2000 and twice in 2001 I developed separate plasmacytomas (cluster of MM cells indicating that the MM wasn’t gone) in locations near the rib, spine, and left femur respectively. These occurred about 6-8 months apart and each was successfully radiated (i.e. the MM could no longer be detected via blood tests until the next plasmacytoma).
After the first plasmacytoma, I decided to take a small amount of thalidomide (thinking perhaps that my new immune system would be more responsive), and a small amount of immunosuppressant and prednisone. I continued with this second trial of thalidomide until my peripheral neuropathy (numbness in limbs) became unbearable; even more important, my MM numbers once again began to increase indicating that second occurrence of a plasmacytoma.
Since my diagnosis in ‘95, I continued to work full-time in Marketing and Customer Support functions at a video company. My only time away from work was during my transplants and even then I was still able to do some email. However, I did cut back on business travel and long hours, partly due to lower energy but mostly a result of wanting to spend more time with family and friends.
On Thanksgiving ’02, I finally needed to go on a medical disability due to MM treatment side-effects, specifically peripheral neuropathy (numbness, tingling, and random sharp pains in my feet, legs, and right hand) and fibrosis (scar tissue in my left leg as a result of radiation). It’s been 6 years since any plasmacytoma and my MM is still in remission, but the peripheral neuropathy side effects are still painful despite trying various treatments and even a clinical trial for it.
However, I certainly don’t want anyone to feel bad for me. I consider myself extremely fortunate to be alive. I’m 63 years old now, have seen 2 daughters graduate with Masters and Bachelor degrees, and my youngest son graduate from UCLA in 2006 in music education. One daughter does breast cancer research, another trains dolphins and my son teaches high school music. We’ve taken some wonderful family & friends vacations, and I’m getting more involved with some cancer organizations. I’m able to do volunteer work for the International Myeloma Foundation, Multiple Myeloma Research Foundation and the Leukemia & Lymphoma Society, all of whom provide research dollars and education programs for Multiple Myeloma. And in 2007 I was fortunate to see my son conduct a high school orchestra, and walk my oldest my daughter down the wedding aisle one day. Then in 2009, was able to walk my second daughter down the wedding. I used to say that I couldn’t wait for the day when I could bounce a grandchild on my lap. Well, on 7/7/09 my granddaughter Ella was born and now she’s taken several rides on my lap. And on 11/30/2012 my grandson Riley Jack was born. And BREAKING NEWS...we’re getting quite excited to meet another granddaughter due Sep 2013. Life is “grand”!
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