The 411 on me... not much too new, but a new wrinkle or two.

[hutchibk]

OK, here's the 411-

1. Mets to my pituitary area: I finished 25 days of low dose targeted IMRT rads to my infindibulum (pituitary gland/sella turcica) last Weds. Oct. 14. All went extremely well, no complications, no side effects other than fatigue and a little blurry vision, from suspected mild swelling in the area of the optic chiasm, which will self correct.

Without a biopsy, we can't determine 100% that these two tiny spots were mets, they could have been benign pituitary adenoma. I spoke to both my onc and rads onc, a neurosurgeon and my new Endocrinologist, who all agreed that this is NOT an area that anyone should be biopsying... that said, upon looking at the MRI, the Endo said that the spots did not look consistent with adenoma, so we are assuming mets.

These mets were outside of the BBB (as my onc calls it, the Better Business Bureau, ha). So, they were inside the internal boney structure of the skull. They are now effectively zapped, bye bye.

Side effects of having a tumor near/touching the very sensitive pituitary gland can be numerous, and I think I lucked out. It turns out I do have a Human Growth Hormone deficiency from the pituitary getting it's feelings hurt... but we won't be supplementing me with HGH shots (because I am a mets patient with the chance of active cancer lurking beneath the levels of detection. HGH supplementation can fuel cancer growth, and if I did do the HGH shots I would no longer be eligible to ride in the Tour de France, play Major League Baseball, or compete in the Olympics, which would be a bummer). The Endo tells me that supplementing it isn't imperative, but in a healthy person would be recommended, as there are a few complications it can cause. In my case she says the risks mitigate those complications and I do not present with those complications anyway, other than the midsection thickness/spare tire, that could also just be 50 yr old menopausal woman.

The other side effect of an insulted pituitary is that I might have 'diabetes insipidus' which is also called water diabetes, and it just means that you have excessive thirst and excessive urination, and urine is not concentrating properly. I will have results from a final urine collection next week. If I have it, it is a fairly easy fix with a once a day nasal spray of vasopressin. I am actually starting to think that I won't end up positive for this, as since radiating the pituitary tumor, my thirst has started to decrease, so maybe we reversed this side effect and made the pituitary happy... but I will know more next week.

2. My tumor markers have increased slowly and slightly over the summer. This could be a combination of two events. One could be shedding of cancer cells from the radiation. The other could (and probably is) from the increase in size and activity of the spot we have been watching on my right illiac crest (rear pelvic bone). It is still small, but showing slight progression.

We have decided it is time to radiate that sucker, too and just get rid of it. I will meet with the rads onc tomorrow to set a plan. We had cogitated about changing systemic pharmaceutical treatment as well (went over several thoughts, options, trials), but since there is nothing else showing up on PET, my onc wants to 'not upset the apple cart' just now and pile on new side effects when we don't see anything else new showing up. It seems that for the most part, the Herceptin/Tykerb is still holding me pretty well. We will PET (and MRI appropriate spots) every three months to stay on top of everything and monitor TMs closely, and the minute that something brand new appears we will talk about changing up the systemic treatment. This week we talked about treatments I have not had yet including Abraxane, Gemzar, Navalbine, Avastin (and Ixempra, but neither one of us is a fan of that one just now)... and he also mentioned the Heat Shock Protein trial that I would qualify for which he finds very interesting, (and we are still cogitating about seriously), the TDM-1 trial if there is one open within a reasonable vicinity, and then watching pertuzimab, nertatinib, and pazopanib results. Seems there are lots of things still in the pipeline, hopefully, if and when needed.

3. The one systemic change we made was adding Aromasin back into my treatment. We dropped it a few years ago thinking that it wasn't gaining us anything, but with new info he thinks that it might be another tool that can't do any harm and might buy us some results... I tolerated it really well before, so I am excited to welcome it back. Whatever it takes to keep this stuff at bay I am open for and the smaller the measures needed, the better in my book.

4. So, for now, I am keeping steady with Herceptin/Tykerb/adding Aromasin and doing my 3 month Zometa, and irradiating the bone spot on the illiac crest. Maybe adding vasopressin nasal mist if I present with 'water diabetes' after urine collection test is done next week.

Whew. My fingers are tired. I think I might be qualified (as we all might) to get a job as a doctor's dictation transcriber... ya think?