KK1, thanks for responding.
I asked about Tykerb and a woman on bco.org is on that with Herceptin for an adrenal met, but I can't have it because it isn't approved with Herceptin. The same goes for Afinitor/Aromasin, but not with Herceptin. In my signature I wrote that I was on Letrozole, but only for a few months before I started Docetaxel and Herceptin two years ago. When I was done the chemo the oncs said to hold off on an anti-estrogen for later, so I waited 7 months and was having pelvic cramps and my CEA was rising before I asked to be put back on Letrozole.
The contrast thing has been resolved. I won't be drinking it or getting IV either. Turns out the oral contrast can cause bp problems and fluid issues which I had been having after each scan. The adrenal controls bp and fluid. Hmmmm. Now I have an adrenal something. Also, if one is on a beta blocker there can be hypersensitivity to the dye. I am on a beta blocker. No one told me this. I found out the information after my fourth scan and looked up the oral contrast by brand name. Stupidly I drank the contrast and had the IV for the fifth scan and for the sixth one, in Jan, I had the IV only but maybe that causes problems as well. I have known that I've had an adrenal problem for a long time-7 years ago I was tested for an adrenal tumour. I guess if I don't have Addison's or Cushing's, then I don't have a problem....until they see it on a scan.
My options have been chemo, changing the estrogen therapy,or TDM1 or Pertuzumab through my husband's insurance. I have considered Xeloda but have read this
http://her2support.org/vbulletin/sho...=xeloda+enzyme and this
http://her2support.org/vbulletin/sho...=xeloda+enzyme. With my extremely sensitive system and obvious metabolizing problem, I'm really leery of just trying anything. I suppose I'll talk to a pharmacist about Xeloda as well at some point. I would really like to keep to a targeted therapy, but wanted to wait a long time before that would become necessary. I am also looking into complementary therapies. I know a woman who had numerous liver mets 7 years ago and through supplementation and a whey protein, she has no evidence of cancer. I actually used it abit a few months ago and my WBC and neutrophils went up slightly and my CEA went down slightly. I stopped because I didn't know if it would be safe for my kidneys and my body isn't used to dairy.
I have consulted with a naturopathic onc (more like integrative) and he brought up studies of low dose aspirin, Metformin, ketogenic diet. We discussed mTor and ALK inhibitors, exercise, vitamin D-I just have to find the right things for me and not have anymore Herceptin delays. Whatever I do, Herceptin needs to be part of the treatment in some capacity. My doctor at InspireHealth has helped me with helping my adrenal-thank goodness for her. I also believe that the beta blockers have helped. News and Lani have posted on studies being done on them, because they address the adrenaline receptor.
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