Long overdue update

Sorry -- I've been remiss in not posting. I have a good reason, though -- I had a number of wonderful visitors last week, the last of whom have just left, and have basically been having a wonderful summer vacation at home. Thanks to Sandi, Jim, Adam, Julianna, Sharon and Maretta for bringing it to me!!!!

Anyway last week I had two doctor's visits, which is a cool thing, because the first one was with the "nutrition/fitness" oncologist. Now, I have been asked why I would need to see her, but in fact she gave me great information about a strength training workout for bone density, which chemotherapy does a number on. I had started lifting weights for this purpose, but the doctor recommends that I not continue that, and instead work on the training she recommends, which focuses on lower body weight bearing -- or anti-gravity exercises, as I think she called them. Her program involved stairs, lunges, and squats -- 3 sets of 12 each. Additionally she is having me do the same arm exercises I had started to do with 5 lb weights, but with NO weights! She was particularly emphatic about not using weights after the surgery, as it can cause lymphadema (swelling of the arm from which the nodes are to be removed -- sometimes huge and crippling and much easier to prevent than to reverse, I think.) ANyway I'm to do this strength training workout twice a week, always at least a couple of days apart. That was on Tuesday. I haven't started the training yet because of the guests, but I will.

Then on Thursday I saw my regular oncologist, before chemo. I brought her my big question about continuing chemo beyond the recommended guidelines to increase my chances of long term survival. She basically said that she only recommends that when the primary tumor is almost in complete remission, in order to get it there. She said that while it's known that complete remission predicts a better prognosis, more shrinkage (short of complete remission) doesn't necessarily -- so she wouldn't go for it.

This sounds to me like the kind of thing that hasn't been proven yet but probably will be -- at least in some cases. (Tumors are so different and treatment hasn't been individualized yet to account for that......) It also sounds like the kind of thing that I should have some say in, given that it's MY BODY. HOwever, it was like fighting CIty Hall to try to get her to see that..... In the end she seemed to be frustrated at my lack of willingness to follow her lead unquestioningly. (I've always been a bad sheep.)

However, she did say that with large tumors like mine complete remission is extremely unusual (5-10% maybe?) and also that my kind of tumor (estrogen + & progrogesterone +) often responds better to hormone therapy. I then remembered that the fitness oncologist, too, had said that estrogen positive tumors really like estrogen, and really don't like it when you take it away. She also said that black cohosh (my suspected catalyst for this cancer) is basically estrogen -- and that she would recommend stopping eating soy, completely, as well.

Alan had said I should cut down, and had thought that soy isoflavones were to be avoided, but that soy protein was okay (for example in boca burgers.) However, this is to my mind a whole nother thing, also given that it might be a kind of "hormone therapy."

SO now I have stopped eating soy. I have a short list of other things I have seen it recommended that I avoid as well, including coffee and decaf coffee, alfalfa sprouts, red clover, chamomile, and a few other herbs. This will be a big change for me (the soy thing especially, which is in a lot of things, and which I have also leaned on heavily because of my rather severe lactose intolerance.) I have stuff I have bought for myself that I could eat (no sugar, no dairy) which I now cannot. I may give away a lot of our tofu and tempeh.... at least Matthew likes the soymilk.

I wonder if I will be able to effect enough change to get my tumor down to almost-in-remission. The doctor said it was down to 3.5 cm on Thursday, having started out at 7. (It was at 5.5 when last measured.) That oughtta be a shrinkage of more than half, given the area of a sphere thing (thank you, Joan Shaeffer!) though of course it's a bit of a squished sphere. I wonder if I can get it to shrink another 2 cms, whether she will then extend treatment.

However, I have to say -- it still seems to be that if my tumor is continuing to shrink at a steady pace, then complete remission ought to be attainable. NOt that I'm trying to avoid surgery -- what I want is complete remission AND removal of what is left of it. Well, we will see what happens (and what I can manage to do...) In the meantime, any tips are welcome..... except about lactaid milk; I'm too lactose intolerant to manage it..... & never liked milk anyway. Maybe the question is about whether the tumor will continue to shrink or whether it's done -- the fitness oncologist had mentioned that there is a certain amount of shrinkage tumors do with chemo, and then they don't do anymore. Certainly if it stops shrinking w/chemo I won't want to waste time on any more......