1939 / Class of '94 / Type: Kappa / Bone involvement, non-secreting / Died: 2/7/2010
While investigating a medical problem unrelated to Myeloma, the radiologist noticed a "hole" in my pelvis. My internist suspected that it might be a lytic lesion and thought that Myeloma would be the most likely culprit. But blood and urine testing showed no Myeloma or Bence-Jones protein. After some further screening, my internist sent me to an oncologist who did a bone marrow biopsy and aspiration. Myeloma was confirmed. I have the non-secretory variety, which is good news and bad news. No "sludge" in my blood and urine from all that protein, but no convenient marker by which to measure progress (or lack, thereof). My diagnosis was on July 13, 1994.
I began a course of chemotherapy immediately: Vincristine, Cytoxan, and prednisone. Six months later I had another bone marrow biopsy and aspiration, which showed no significant population of monoclonal plasma cells. We adopted a policy of "wait and see" which entailed a skeletal survey and blood tests every three months. I began living on my first ďplateau" in January of 1995. That plateau lasted for two and a half years. In the summer of 1997, a three-day visit at Cedars-Sinai with Dr. Brian Durie convinced me that it was time to treat my disease once again. I had both the Sestamibi and FDG nuclear medicine scans, which were interpreted by Dr. Durie and Dr. Waxman at Cedars-Sinai. They showed enough activity to warrant treatment. I decided to drop the Vincristine (which Iíd become convinced had no useful effect) and did six months of Cytoxan and prednisone. I declared myself on plateau, once again, after that treatment and had no treatment for the next ten years. Then, using the Freelite Test, I found that my only marker, free kappa light-chains, were rising slowly. In September 2007 they had risen to the point where I decided it was time to do treatment again. I began Cytoxan and prednisone again (since it had worked twice before). I had taken 90mg of Aredia monthly from the summer of 1997 until 2005, when I elected to stop taking it. I track skeletal surveys (annually), chemistry panel, CBC, B2M, CRP, LDH, serum creatinine, Freelite test, serum electrophoresis and immunofixation. I use the PET scan as long as itís available through Medicare. I have some pain in my pelvis, but itís not too bad. I use celebrex (I also have arthritis) and hydrocodone for pain.
Back in the fall of 1994, I learned of the International Myeloma Foundation and became a member. I acquired all the back issues of Myeloma Today, and my wife and I attended an IMF Patient/Family Seminar in San Francisco. I met other people with Myeloma for the first time - hundreds of them! It was an enlightening experience as I came to find out that I wasn't alone, I wasn't going to die (at least as soon as I'd thought), and there was a wealth of experience to be tapped. Iíve attended several IMF Seminars since then. I spent about a year investigating the subjects of cancer, Myeloma, death, dying, health, wellness, and attitude. I decided that I must be an active participant in my journey with Myeloma and that the best way to do that would be by enhancing my immune system. I used the principles of Ayurveda (from India) for about sixteen months, did daily meditation and guided imagery, instituted programs of exercise and diet, and banished as much stress as possible from my life. I also got Rudy, the cancer dog, who was my faithful companion until he died from an inoperable tumor in 1999. Since his death, God then sent me Serena (Viszla), Honey (Yellow Lab), and Rudy II (German Shepherd) as my cancer support dogs. Over the last few years I have dropped most of the alternative initiatives I embraced back in those early years, but I still go to any lengths to avoid unnecessary stress.
I went to M.D. Anderson for a consultation with Dr. Raymond Alexanian in November of 1995. Dr. Alexanian suggested that I might have a Solitary Bone Plasmacytoma (SBP) rather than Multiple Myeloma. The good news about that is that SBP may be cured where MM is not currently curable. I went to a radiation oncologist to pursue irradiation of the SBP and found that he was absolutely against that treatment. I studied the arguments of both sides and, after some prayer, consultation with friends and family, decided that I did not believe that I had SBP but did, indeed, have MM. I did not pursue the recommended treatment and have not regretted that decision to this day.
I became convinced in the summer of 1996 that we needed a Myeloma support group in my area (north-central Texas) - well, I needed one even if nobody else did. So, I got out the IMF Patient-To-Patient directory (which existed before HIPPA) and called everyone in my area. We began meetings in September of that year and eventually moved our group to Dallas, where most of our members reside. We are now a fairly large group with a mailing list of over 250 families. It gives me a focus and a whole new group of friends in my area.
We live in Arlington, Texas but come from the north. Lucy is a Montreal import and I grew up in New York City. I'm now 68 years old, I'm married to Lucy, and we have two daughters: Paula (41) who is married and lives in our area, and Laura (38) who now lives and works in Brenham, Texas. We co-habitate with a three-legged foundling cat named Henry and Serena. We moved to a townhome in mid-2007 and had to downsize our four-legged family. Our Rudy II went to a new home in Killeen, Texas and Honey stayed with our son-in-law who bought our previous home.
My childhood was one of illness from age 10 until age 21. I had Juvenile Rheumatoid Arthritis, an auto-immune disease. It left me with many painful joints, which bother me more most days than anything that Myeloma has done. I was exposed to an incredible array of toxic substances because, as a boy, I played on the beach where the effluvia from New York City, and cities on the Hudson River, was deposited on a daily basis. Also, Staten Island (where I grew up) was agricultural in the 1940's when I was young, so there were lots of fertilizers and pesticides to add to my personal toxic list. My father's hobby was woodworking and we had asbestos-wrapped pipes in our basement. My father was a heavy smoker and, for about 15 years, so was I.
I worked for IBM Corporation for 30 years and retired in August of 1993. I worked as a volunteer for a hospice organization, the Arlington Police Department, and Adult Education after retirement. I love to write and have written my autobiography, a book of poetry, short stories, and am writing the story of my journey with Myeloma. I have written many articles about dealing with myeloma and I am the editor for our support groupís monthly newsletter that goes to some 250 families. Most days I try to find that proper balance between optimism and the reality of this deadly disease. That way I can live each day fully and well.
As of 2007, I have survived MM for 13 years, but there are still two people in our support group with longer survival than mine. Treatment options have increased and there is even more hope on the horizon.
2/7/2010: Wanted to let all of you know that our dear friend, support group founder and leader, Peter Tischler passed away this morning at 1:24am. He very much appreciated everyone at the IMF for their dedication in helping to educate Myeloma patients. Marcia Sawyer
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