I saw the doctor yesterday. The chemo I had in October did nothing for me, so I need to have some more and then on to a transplant. They don’t really do many bone marrow transplants anymore. Instead, they use stem cells. It will probably be February by the time I’m admitted for my transplant. In the mean time, I’m going to try to enjoy myself as much as possible, exercise a lot more (so I can be stronger for the transplant) and do some kind of chemo, which has yet to be determined. I failed a few treatments, so there’s one choice left, pretty much (Velcade in some combo). I’m in a situation where my cancer grows whenever I’m not constantly being treated for it. Time off is great and feels wonderful, but my disease likes it too. I’m not going to lie. I worry about my dog outliving me, and what will happen to him. How can I be sure he’ll be taken care of and loved? My cat, too.
I have an appointment on December 13 to see the transplant doctor.
I wanted to tell you a little of my story, as it parallels yours.
I was diagnosed in early 1993 with stage III-B Multiple Myeloma, type lambda. That means that about 90% of my marrow had gone to plasma cells. I underwent an unsuccessful standard chemotherapy of melphalan and prednisone, and was switched to intermittent high-dose dexamethasone (Decadon) from mid 1993 – earaly 1994. That, along with complementary interventions put me into a good remission until early 1996. When a trace amount of the marker protein (Bence-Jones protein) showed up, I opted for a clinical trial in stem cell transplantation.
The clinical trial was to answer the question ”what happens when you increase the strength of the treatment between harvesting the stem cells and returning them to the patient?”
The treatment consisted of three times the standard dosages of three different chemotherapies, followed by 1200 rads of total body irradiation (TBI) using Cobalt 60 in six fractions. My stem cells were returned a couple of hours after my last radiation treatment.
The idea was to ensure as many marrow cells were killed off before restoring my hematopoetic stem cells.
The clinical trial ceased enrolment after me due to a high mortality rate among the participants, which turned out to be related to the red cell transfusion process following the transplantation of the stem cells
I was one of the lucky ones. That was November 15, 1996 – over ten years ago. I remain cancer-free to this day, and involved in health care advocacy.
What was important for me was to see my treatment in a particular way: perception is everything.
I became the manager of my health-care team, which consisted of the family physician, oncologist, psychiatrist, psychologist, parish priest, colleagues at work, and, of course my family. Added to this were community resources such as the Myeloma Foundation for knowledge and several cancer peer support groups for modeling survival. Mediation, visualization, positive self-talk, diet, exercise, and prayer were my constant companions during my treatment. It was what I call ecological treatment: treating the whole self, not just the disease.
I guess it all worked, and I came out of it with some treatment side-effects such as fatigue, depression, some peeripheral neuropathy, and chemo-brain. As side effects are largely dose-related, I have had much of these symptoms for years and had to revert to my long-term disability coverage. However, I count myself as lively and active despite the inconveniences of side-effects. ”It beats the alternative,” was my usual rejoindeer.
I hope that your stem cell transplant is successful. One of the very important things to realize is that, in the decade since I had mine, the transplant procedure has become more finely targeted and user-friendly. You probably won’t have the extent of side-effects I have had.
If you like, I would welcome conversation about myeloma and the ABMT process. I am the past chair of the Autologous Blood and Marrow Transplant (ABMT) Peer Support Group at Princess Margaret Hospital in Toronto, Ontario, Canada, and have served on numerous research, educational and advocacy groups in the ensuing years since my diagnosis. I am currently a Director of the Canadian Organization for Rare Disorders / Organisation Canadienne des Maladies Rares (http://www.raredisorders.ca)
Again, good luck and if sharing any of my insights into myeloma and its treatment, and of the ABMT process, I would welcome your questions or comments.
Regards,
Jos??ph Etienne