[Becky]

One big thought that sticks in my mind is the adrenal gland (tumor). These are almost always benign but still can wreck havoc. Some of your sweating episodes come to mind and that you mentioned you have (or had) a bp issue. Ironically, I know about this because my mother has benign adrenal gland tumors. She is also a bc survivor (highly ER/PR+ and not Her2). It was odd how hers were found but she too had sweats, coordination issues and bp that was not easily controlled. She also had thyroid issues and is on Synthroid. Have you had blood work on if your thyroid is working properly - we have so much blood work it would be weird if you didn't. Secondly, I would go see an endocrinologist about the adrenals. If you have had scans where the adrenals were included, do the tumors change? In my mom's case she had had a CT scan in 2002 because of a bout of diverticulitis. In 2004 she had bc and about 18 months later, had severe hip pain. I told her she had to go to the onc to rule out bone mets and got a PET scan. A savvy radialogist looked at the old CT and noticed that she had adrenal tumors then and that they were bigger - hence some of the symptoms. I would at least mention this to your onc as onc's have to be internists first before specializing in oncology. Ask if you should see an endocrinologist. Also, we are all different and certainly metabolizing drugs and dyes can leave the liver weak and your Gilbert's syndrome may enhance that. However, its weird that Herceptin didn't seem to perform the same.

There are alot of questions and unknowns that need to be explored with you for sure. Ugh. One thing you can do for yourself is get all the results of all your tests and bloodwork and put them in chronilogical order. Maybe even graph them - blood markers and other things. Then around the same dates, write in other facts when things look haywire like - received chemo, received a dye. Started tamoxifen - ended tamoxifen - started Femara - things like that and see if there are any swings in the blood work, do some things go up and other things go down? But you do need to get to the bottom of it as it seems your body fails you at certain times and does not at others. Even the loading dose of Herceptin could just be a coincidence and not a fact. Everything is more in sync right now - liver is calm and (Adrenals) are behaving?? And they could misbehave in 2 weeks or 2 months. I think you are dealing with something metabolic even though you are also dealing with cancer but even so, the cancer seems to be behaving which is good but you need to get something else checked out as all of this must be scaring you to death when you have an "episode". It could also be allergies or sensitivities to the chemos, tamox, dyes whatever as well. We are here for you as you investigate this. I think it is something outside of cancer that can be controlled.