Hello all
I have a rare form of lymphoma called lymphocyte predominant hodgkins disease. It is slow-growing, responds well to treatment, but often relapses. I am just diagnosed with replase number two, after remission periods of 10 years and a further 8 years following treatment with conventional chemo. The promises of cure faded out some years ago, and it looks like I am in the rare group of patients who continue to relapse no matter what. The rarity of this illness means that few oncologists/haematologists have experience of treating it. To complicate matters, I have moved to a different part of the country and have a new consultant who has only met me once. He rather shocked me by suggesting I need to have high dose chemotherapy and a stem-cell transplant, which is something I do not think previous consultants were considering. In fact, he seems unwilling to discuss any other options and is not too keen on discussing this one in detail. However, I know people who have undergone this technique, and are still relapse free 20 years later: albeit people who were 25 years younger than I am now. They all warn it takes a extreme toll on your overall long-term health, and that it should only be considered 1) as a last resort and 2) if there really is a chance of cure. I have long-term health problems from the regular chemo, so the idea of having even more serious ones fills me with dread. if the prospect is living a few more years in a state of permanent illness, frankly I do not want it.
I'm going to see my GP later today to ask him to refer me for a second opinion. However, that might be someone who has equally little experience of treating this condition. Can anyone advise on how I might find someone who knows this illness well, and has experience of managing patients who continually relapse?
