Kirsten's Leukemia & BMT experience -- What happens next?

I was told they would test my immediate family: mother, father and brother in the hopes they matched me for a related bone marrow transplant. Unfortunately, they did not match.

It was at this point that the Peel Memorial Hospital oncologist, Dr. Sandeep Sehdev, and Dr. Steven Reingold, sent me to Princess Margaret Hospital in Toronto to be delivered the bad news. Dr. Jeff Lipton told me I did not have a related match, and that my other options were chemotherapy or an unrelated transplant. This was extremely disappointing news to us because we had been told a related bone marrow transplant was the preferred treatment for Chronic Myelogenous Leukemia. (hereafter referred to as CML) The future seemed bleak.

I remember hating Dr. Lipton for the dismal and black picture he painted to my brother and I. He was not positive, and this was a strong factor in causing me to have most of my treatment done in Brampton, even though Princess Margaret was much more conveniently located, as I didn't own a car.

It was strongly suggested the best course of action I could pursue was chemotherapy with the drug interferon. I was told while it didn't work in all cases, in the percentage of cases it did work in, it had a really good success rate at achieving remission. I was quite happy to comply with this protocol as Dr. Lipton had successfully frightened me silly in regards to the unrelated bone marrow transplant and all the possible complications that could set in.

Important CAVEAT about Dr. Lipton!!

So, if you will, picture me, the needle phobic, setting out how to learn to give myself needles! I was on interferon for close to two and a half years, and I never got used to giving myself needles! I had a little routine; I would count to three, the idea being that on three I would jab the needle in. Well, more often than not, I would jerk the needle away at the last minute! Sometimes I already had it in, and the reflex action would pull it out, and I would need to begin all over again! Eventually I would get it in. Ouch!

Actually, nine times out of ten it didn't hurt. The tenth time, it would sting.

About a year or so of taking interferon went by. My blood cell counts started to drop, and keep dropping. It was necessary for me to get transfusions of red blood cells, and occasionally platelets. Concern about the continually dropping counts led to another bone marrow aspiration. It was thought that I was myelodysplasic, and this indicated a progression of my disease into a worsening state. I was told an unrelated bone marrow transplant was now my only option.

The search for a suitable donor was on. I stopped taking interferon because it would only aggravate my dropping counts. A month went by. Then another, and another and another till a total of about six months had gone by and still no word or decision on when to go ahead with transplant.

Lo and behold, around the end of the six months, my counts started to creep back up. The doctors were not to sure why or what was going on. They sent me for tests such as the one for Chrohn's disease. They finally discovered that for some reason I had developed a B12 deficiency; probably a reaction to the interferon. Back on the interferon; no transplant!

I continued in this manner, finishing my undergraduate degree at York (1995), and working as a freelance musician up until about February, 1996.