Saturday, April 04, 2009

How is it April already?

My head is as always buzzing with thoughts. My health has of course been front of mind. My incision is mostly closed but is still being packed a little. It went through a period of very rapid healing, but for the last week has looked pretty much the same. Coincidentally, the slowdown has coincided with me starting a regimen of mangosteen juice to boost my immune system. A close friend of my sister's had her try it, because her rheumatoid arthritis has gotten severe. She says she is feeling better since starting to drink it. There is a 21 day challenge to get you pumped up, as it were; you can see a description of it here. I am currently floating along on day 10... I have not quite been able to dring a whole gallon of water but have definitely been drinking a LOT. Do I feel any different? I do feel some more energy, and will see what time brings. Many people refer to products like XanGo as snake oil, call it a pyramid scheme, etc. And yes, it's expensive. But I am starting to look more closely at changing my diet to eat more immune building foods, and I'm using this as a kick-start in that direction. I don't know what the future will bring cancer-wise, so it behooves me to be as healthy as I can in general.

My next CT scans are on April 20 and I'll see Dr. Rini on the 22nd. I am of course praying hard that my scans are clear; my pessimistic side is not holding its breath. Since this last surgery I've been more active on the Kidney-ONC ACOR email list - an online friend (hi Bonnie!) had recommended checking out ACOR when I was first diagnosed. I subscribed to the mail list but changed my status to no-mail right away because I couldn't handle the messages... didn't want to think of myself as having to to deal with metastatic disease. Right now I suppose I am technically NED but NED is only as good as your last scans. There are lots of ways things could go if more Spots are found this time. The most likely would be systemic therapy; that is, therapy with drugs. I've been researching treatments that are available if I need drug therapy. There is one that is really rough but is the only one that can produce a CR, or Complete Response, in some people. This treatment is called HDIL-2 which stands for High-dose IL-2, using the drug Interleukin, an immunotherapy drug. High doses of IL-2 are given to the patient in a hospital setting. This is necessary because the drug is, obviously, very toxic and strong side effects can be experienced.

The Clinic doesn't offer the treatment; only 2 places in OH do, and a fellow patient of my onc was advised to go to Beth Israel-Deaconess Hospital, in Boston, for treatment. I checked my health insurance coverage; of course Beth Israel isn't part of my tier 2 national network, and I don't even know if the treatment would be covered anywhere. I am hoping that I won't have to worry about it, but if it comes down to it, I will appeal to the health plan folks on the basis that because we don't offer the treatment at the Clinic, I should be able to go elsewhere for it. The effects of the treatment sound horrible, but if I need it, I want to give it a shot. Also, there has been some research in which people who were treated with a different RCC drug, and later had HDIL-2, experienced heart problems. Some of the folks on my email lists are also of the belief (anecdotal but entirely possible) that even if the HDIL-2 didn't result in a complete response, it may have helped to hold future growth at bay.

The entire preceding paragraph is a demonstration of my constant need to think ahead several steps. I don't know if I will EVER be in a position to have to consider any systemic treatment. But my mind always just has to "go there". I've said before that I think part of the reason I got cancer was to teach me patience; right now I am not a very good student. Over the weekend I was discussing treatment options with Jim, and asked him if he thought I was being too obsessive about it. He told me no, that arming myself with information is a good thing. On the other hand, too much knowledge is sometimes frightening.

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