Ever hear the statement “sometimes the cure can be worse then the disease”? Well in the case of cancer, a truer statement cannot be found.

There have not been many advances made in the treatment of cancer in the last 20+ years. Standard treatments still consist of infusing deadly chemicals (chemotherapy) into the body, along with the use of radiation, at dosages many times greater then would be seen from normal chest x-ray, to kill the cancer. Some have likened these treatments to blood letting in the dark ages.

Unfortunately, these treatments can’t differentiate between cancer cells and normal cells, resulting in a plethora of egregious effects on the body. Due to the destruction of healthy cells in the body, numerous deliterious side effects can occur, i.e. drop in blood counts, nausea, fever, chills, mouth sores etc. While these can typically be treated with common medications, it is the other effects that may occur shortly after treatment or several years down the road that are the real concern, such as peripheral neuropathy and the increased risk of contracting other cancers in the future.

Fortunately there are new treatment options becoming available, such as monoclonal antibodies which are less harmful (but still carry substantial risks) then chemotherapy. And the use of transplants are becoming more wide spread, although this is typically a treatment of last resort as it carries a high mortality rate. (I discuss more on transplants in Chapter 4 – My Treatment Choice)

Now in the case of hard tumor cancers, the choice seems relatively simple. Treat with the deadly chemicals, and attempt to get through the side effects as best as possible. Not doing that will almost certainly cause the cancer to spread with death soon to follow. History has shown that such treatment produces excellent results, with very long lasting remissions or cures.

But in the case of lymphoma and leukemia the decisions are not quite that simple. With few exceptions there is no cure for leukemia or lymphoma, regardless of when it is caught i.e. early diagnosis or late diagnosis. There are only varying degrees of remission. In 99% of the cases, the disease comes back, and many times more aggressively then before. Plus repeated treatments with the same, or even different chemicals may not produce subsequent remissions (if a remission can be obtained at all) lasting as long as the previous one, as the cancer developes resistance to the treatment. Top that all off with the fact that your life might not even be prolonged over not doing anything at all, doing nothing at all becomes a viable alternative.

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From the moment my friend notified me of my high lymphocyte count, I immediately turned to the internet, and began investigating every possible reason for a high lymphocyte count. By the time I received the diagnosis of CLL, I was an old hand at navigating the vast knowledge available on the internet. I managed to find a news group with others also diagnosed with CLL, and was able to pick the brain of a CLL specialist in the UK.

It was at this point that I realized that our health care system leaves something to be desired, and doctors aren’t the gods some of us may believe them to be. From all the research I had done, people I had exchanged information with and a review of my immunophenotype report, I came to the conclusion that I did not have CLL. Of course that didn’t necessarily indicate a good thing. There were several other possibilities, the most likely scenario being even worse.

I confronted my oncologist with the discrepancies in the report, and asked for some additional tests to confirm the diagnosis. He simply stated, “you don’t need any additional tests. You have CLL, period”. My guess is he really didn’t want to spend the money. Or he just thought he was a know it all, and didn’t like his diagnosis being questioned.

Fortunately, my company switched insurance providers. We were enrolled with Kaiser Permanente in Los Angeles, and I was assigned an oncologist who was working as a fellow at the Kaiser – Bellflower facility. She was young and eager and willing to explore options, which is something you don’t always find in more experienced (not necessarily smarter) oncologists who aren’t as willing to explore and learn.

Finally after about 2 months and running every conceivable test, which included PET & CT scans, bone marrow biopsy (which is not a very pleasant test) a spinal tap and FISH tests to check for chromosomal abnormalities, my worst fears came true.

I had MCL (Mantle Cell Lymphoma), a rare and relatively newly designated (since 1990) lymphoma. Plus since it seemed only to be manifested in the blood and a slightly enlarged spleen, it was likely the leukemic phase of MCL, which typically is an even deadlier form of MCL.

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On March 26, 2002, I went for a routine physical exam, something I did on a regular basis. At the time I was feeling fine, and thought I was in pretty good shape for a 54 year old. I may have been a little over weight, but I had been riding a bicycle 150+ miles a week for the last 20 years. If nothing else, at least I was aerobically fit. Never in my wildest dreams was I concerned about a blood or lymphatic system cancer. My biggest concern was dealing with a cholesterol level greater then what would be considered healthy.

So it was with great surprise, when a friend, who works at the clinic were I went for my exam and blood test, came over to my house and asked “how are you feeling?” Of course I answered fine. She went on to confirm that, and at the same time inform me that my lymphocyte count was elevated.

The obvious response to that sort of news, especially when you’re feeling fine, is to chalk it up to being a lab error. So when the doctor authorized a second blood test, I immediately ran to have it performed.

As you may have already surmised, the results were not a lab error. The results were the same as originally reported. Subseguent blood tests were then ordered to evaluate the reason for the high lymphocyte count.

When the results (immunophenotyping) came back, the diagnosis was Chronic Lymphocytic Leukemia (CLL).

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© 2011 Living with MCL Suffusion theme by Sayontan Sinha