First Cycle, Second Round Complete

Yesterday went pretty well. I did a little dance before Stacy, the chemo nurse, set up my IV and she got immediate blood flow. I hope I remember that dance in two weeks! I'm feeling nauseous today and will have a snack when I finsh this post before I go off to the hair salon to have my roots covered up. Thank goodness my scalp can still tolerate the dye -- there's a lot of grey up there!!

I don't go back to reread what I've posted and since this question has come up frequently (not necessarily from readers of this blog, I thought I would explain. I've been asked when my chemo treatments will end and the answer is, when they stop working. The issue is this: Since my tumors are so small, they cannot be removed surgically, surgical removal with wide margins being the gold standard for LMS and the ONLY way to "cure" it. Dr. K put me on gemcitabine to try to stabilize my tumors and allow me to continue my quality of life. Despite the side effects of this treatment, I still go to work every day, I can go on vacation, I can still color my hair, etc. However, this treatment will not cure me and will not cause the tumors to disappear (although shrinkage, as we have seen, is possible). When this treatment stops working -- and her former nurse informed me that the longest any of Dr. K's patients saw stabilization on gemcitabine only was 18 months -- she will either add a second medication (taxotere), which is the big guns and will cause all the problems you read about from chemo, or she will try a new, stronger, multi-agent chemo. That treatment will also seek stabilization.

When the chemo stops working and the tumors begin to grow, they can be removed when they are larger than 1.5 cm each. I doubt any surgeon would bother to do surgery if there are still more mets appearing. In fact, I believe you must have stability in your tumors before surgery would be scheduled.

So, chemotherapy will continue for a long time. I wish that that were not the case, that chemo could get rid of my tumors and I could go back to be NED ("no evidence of disease") on it, but that is highly unlikely. I now have a chronic disease and will not be cured under this treatment. There is no chemotherapy treatment that provides a cure for LMS. Sad, but true.

Those are just the facts, ma'am. No need to be sad or disappointed. It is what it is and we make the best of it. Right now, I'm enjoying life as best I can and definitely appreciating the things I can still do and trying to make the most of everything. No one ever knows what tomorrow will bring.

Sending you all hugs and hopes for a wonderful weekend.