Another update

Today I met with the doctor who will be managing my treatment at Fred> Hutch, accompanied by our family friend Lowell Neufeld. He had some even> more surprising news than I have heard so far. After review by several> pathologists over the weekend, they have come to the conclusion that I> have an even more rare form of leukemia than previously thought.> Apparently at Fred Hutch it is seen once or twice per year. For those of> you who have been researching this a bit, it is not AML or ALL, but a> leukemia of my stem cells, and is called Undifferentiated Leukemia.> Basically, to summarize, stem cells are supposed to make 2 different> types defense mechanisms against infection. One is the blood (white> blood cells), the other is the lymphatic system. The type of leukemia> that affects the way the blood cells are formed in adults is called AML.> The type of leukemia that affects the lymphatic system is called ALL. MY> type of leukemia is affecting both. >

So, I do not qualify for the experimental drug they had planned on> signing me up to be in the test group for. Since this is such a rare> situation there is not a large amount of data they can draw from as far> as treatment plans. What they will do is basically try to cover as many> bases as possible by giving chemo that has been shown effective for AML> and ALL independently, and see how that works.

So the plan is that I will check into the hospital Wednesday morning to> get a catheter put in for them to be able to do all of the treatment> through, they will give me some medication to help my body prepare for> the chemo, do a test on my heart, and we'll begin the chemo treatment on> Thursday. The cocktail I'll be having is a 5 day treatment, and I'll be> in the hospital for about 3 weeks. Then they'll see if the cancer is> gone from my bone marrow. If not, they start over with that treatment> and a new 3 week hospital stay. If the cancer is gone, I'll have 3 more> 5 day treatments, once per month (It is likely that I can recover from> those treatments at home), then proceed to a bone marrow transplant.> Apparently the bone marrow transplant is quite a bit rougher on my body> to recover from than the chemo, so once I get that, they recommend I> plan on a 6 month recovery before returning to work. So all in all,> about a year or so of treatment.> >

> One point of interest from my meeting with the doctor today was when I> asked him if there any possibility of a misdiagnosis, due to how rare it> would be that I could get this, and how well I feel. He kind of sat back> in his chair and did say that he was just a bit thrown off by how> healthy I look and feel. There is a test we have been waiting for> results on that will tell the doctors about something called my> 'cytogenetics,' which is basically a test of all of my chromosomes.> Among other things, that will indicate how likely it is that I'll> respond favorably to the chemo. He said that if my cytogenetics come> back with any big surprises (meaning they look very good), he may throw> the brakes on just to make sure we're heading down the right path. He> also pointed out that a situation like that would be unbelievably> unusual. But I've already given them a bit of a rubix cube to figure> out, so there is a shot, in our mind, of some amazing fluke (dare I say> 'miracle?'). In ANY case, there is a serious problem with my white blood> cells and my lymphatic system, so it's not like it's Mono or something> 'easy.'> > Your prayers and positive thinking continue to give us strength, both> spiritually and physically. Hopefully some day you all will be able to> experience the feeling of peace it brings to understand and accept that> we can not control everything in our lives. Of course we will continue> to make the best decisions possible based on the options available to> us. We just have an amazingly warm feeling that everything is going to> be OK. It's certain that definition of 'OK' is completely unknown,> however we think that it means I'll be cured, and it's going to take a> whole lot to convince us otherwise!!!> > Thank you again for everything,