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Due to the fact that I am a newcomer to the world of non Hodgkin's Lymphoma, I have hesitated to talk about my experience living with this disease. I have not endured the painful bone marrow transplants, nor have I had my quality of life destroyed for a time by chemo, my body has not had radiation burns and I do not have to worry about what would happen to my children if I should die since they are adults.
But, I got to thinking that my story is the story of many of the people with non-Hodgkin's . . . we are a large group who lurk out there in limbo. There is no cure for our disease and there are very few approved non- toxic treatments available to us, so we are on what is called "Watchful Waiting". This means that we do nothing medically to prevent the cancer from growing until it reaches the point that we are forced to treat. Many view Watchful Waiting as the gold standard for treatment of non-Hodgkin's. . . doesn't it seem barbaric in this day and age that the best we can do is nothing?
Every three to six months, we are evaluated with numerous blood tests and a CT or MRI to see if the cancer has encroached to a point that requires treatment. We constantly worry about our tumor burden becoming too great since that will affect how well we respond to treatments. We agonize over choosing the "wrong" first treatment which offers, at best, just a short reprieve but can burn bridges to other treatments. We fear the B symptoms, drenching night sweats, fever, loss of weight, and extreme fatigue, because this will mean our disease has transformed to aggressive lymphoma which requires toxic chemotherapy immediately. But worst of all, we live each day with the knowledge that no matter what we do, our life is going to be cut short.
There has been a lifeline thrown to us in the form of low toxic personalized vaccines which have been shown to be effective against lymphoma. Many think that they may be a cure for our disease and if not a cure, they do offer long term remissions without burning bridges to future treatments. The concept of "Watchful Waiting" was born out of the belief that first you do no harm . The Lymphoma Petition, which has been signed by thousands, was born out of the belief that there is Hope.
Betty Walters: dx August, 2001, Low Grade Follicular non-Hodgkin's Lymphoma, W&W
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