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Patients Against Lymphoma


Support > Patient-to-Patient > Patient Experiences & Guidance

Judy Weinstein's Story

     I hate it when a doctor acts like he has the ONLY answer and uses fear tactics to try to convince me to do what he wants. It makes me want to prove him wrong. :-)

About 6 years ago, I was having a problem with my blood, as well as my usual lymphoma problem. At that time, I had developed antibodies to my red blood cells. My red blood cells were getting attacked and "broken". My wonderful oncology doctor put me on CVP treatment, but wanted me to see a bone marrow transplant specialist for a second opinion. My doc knew that I was against bone marrow transplants (for myself, not for anyone else's case), but he wanted me to know in more detail what I was turning down, so that I could make a more informed choice. 

Getting an opinion from the BMT guy was certainly an eye-opening experience for me. My doc thought he would tell me about an autologous bone marrow transplant, but the BMT guy said it wouldn't be worth it. He wanted me to immediately have an allogeneic BMT, at that time an extremely risky procedure, as it was before all of the miracle drugs that they use these days to help counteract the side effects of the procedure. 

I told him that I was generally against an allo BMT, unless he could persuade me I'd be better off with it. His response was to tell me that I'd be dead in less than 2 years if I didn't have an immediate allogeneic transplant. He told me that after reading my chart he was sure that his way was the only way I'd be alive in two years. 

I said, "Oh really? And tell me about the risk factors of the allo BMT" (which I actually already knew). He said that 50% of the people die from the BMT procedure, 25% relapse in less than two years, but the remaining 25% were disease free at the two-year mark. Then I asked what those two years would be like. He told me about how I'd have to be in isolation for a long time, but that I would still probably have numerous infections and problems with graft vs host disease, and exhaustion. But after two years, those effects should be mostly gone.

So I remarked that it seemed to me that he was telling me that by having the allo BMT I had a 75% chance of being worse off than I was right then. He said that I would also have a 25% chance of being alive. Then he said (in an offended voice) that most of his patients came to him desperate for a BMT and usually were trying to talk him into taking their cases. I told him I didn't think decisions made in desperation had ever worked out well for me and that I preferred to go on what felt right for me.

He went back to the idea that I would be dead in two years if I didn't follow his advice. I was fed up at that point. I said he didn't really know that. He was guessing. I told him that he didn't know me, and really he hardly knew my case. He had studied my chart for, what, ten minutes? A half hour? I lived in this body all my life, and I knew how my body tends to react to treatments, and this didn't sound like a good deal to me. I told him he was offering me up to 2 years of real sickness, with only a 25% chance that I would be alive at the end of it. 

My situation looked like this to me: I was feeling pretty well, regardless of the problems I was having. I went hiking every weekend, and I was teaching part-time and living my life. I had two kids in high school, one of whom was a freshman, and I'd be damned if I was going to die with my kids in high school, so I had to be on at least a 4 year plan. I also was unwilling to spend the next two years in dire sickness at the exact time when my kids most needed me. 

I said that I would take my chances on beating his two-year death prediction. I was pretty sure he was wrong, and I wasn't going to let scare tactics force me into a wrong decision. I would pursue the treatment that my own doc and I had talked about. 

The CVP treatment went well, the blood problem was cleared up, and my lymphoma receded. It is now a little over 6 years later. My kids are both out of high school and into college. I have truly enjoyed the past 6 years, and wouldn't change a thing if I could. I have been in and out of treatment during that time, but have continued to teach and hike and have adventures and enjoy my kids. Every once in awhile I tell my doc to say hello to the BMT guy for me and tell him where I'd been hiking recently-the Sonoran Desert canyons, the Columbia River Gorge…

I told this story at the 50th birthday party my kids threw for me. They hadn't heard the story before, and were really glad that I had chosen as I did. I, for one, know that my son would not have made it through high school if I died during that time. He had enough problems getting through as it was. But that's another story.

Judy Weinstein
10 years of NHL and counting. 5/92 dx low grade, follicular small cleaved cell, transformed 1/02 to more aggressive large cell. Have been through numerous treatments, including: chlorambucil and prednisone, fludaribine, 2-CDA (cladribine), CVP, Rituxan alone, Rituxan with interferon, Zevalin, Rituxan with doxil, vincristine and prednisone, and Rituxan + CVP. 

My bone marrow had been wiped out through some of the earlier treatments (especially the fludaribine 2-CDA and Zevalin), necessitating frequent platelet and blood transfusions since Jan 2001. Currently on Rituxan + CVP, with the Vincristine administered low-dose weekly, and the rest every 3 weeks. This treatment seems to be effective for now. With the serendipitous addition of Neulasta, the Rituxan + CVP seems to be bringing that transfusion trend to an end, thank God! My last platelet transfusion was 8/19/02, after 18 months of twice weekly platelet transfusions! --Update: had another platelet transfusion on 11/5/02, hopefully the last one. My platelet count is climbing again.

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