The relentless downward spiral continues
Basically, the lesions that were treated with gamma knife on August 2 responded, except one lesion (tumor) that continues to grow (from 1cm to 2cm in 2.5 months — not good), there’s a new lesion next to the T6 spine pushing on nerves (could make me lose function in legs if not treated with radiation), and now my lungs are filled with innumerable small lesions. Guess that last “easy” pill-form chemo didn’t work. The doctor says I have 10 months to live without treatment, maybe double that with treatment. Chance of surviving 2 years: 50%. Of course that means that I could be on the good side of that 50%. I will be on some sort of chemo for the rest of my life, but from what I understand we’re scraping the bottom of the barrel for standard treatments.
I have a call in to the oncologist to see if we now have enough tissue to do a thorough biopsy. It’s possible that this thing has changed hormone status (from negative to positive). That happens in only about 20% of cases, so it’s unlikely. However, if it’s made the magic switch for some reason then my treatment options are far greater and more effective. (UPDATE: He says this is a good idea and he’s looking at the scans to see which tumor would be the best for biopsy, I also tacked on the request to find out if it’s possible to do an assay of the tumor cells in the lab to see what chemo they respond to rather than doing hit-and-miss treatments on ME and waiting three months every time to see if the treatment is working or if I die instead — he’ll get back to me as that technology is new and not all that accurate). We’re getting down to some of the last options for me as far as I understand it. I know I’m not a statistic and all that, and that all the statistics are old (but I’m not in even the old statistics because almost nobody has what I have and all your pink ribbon money goes decidedly elsewhere in breast cancerland). I’d be a fool not to plan whatever life I have without an eye on the possibilities. (Update 2 – Biopsy scheduled for Tuesday the 26th at 7:00 a.m. I should be out of there by 12:00 – 1:00 if everything goes right. I didn’t last time… Oh well.)
What that next option is will be another IV drip chemo (Gemzar/Navalbine). The oncologist says these drugs are “well tolerated.” I really lit into him about saying that these things are “well tolerated” when he actually has no clue what he’s talking about as far as how they affect real life — just clinical life. I was not a happy camper yesterday. He looked pretty upset and I do feel badly about being what he called quite nicely a “feisty patient.”
Right now I’m back on decadron (evil steriod that takes down swelling around tumors in brain and spine). It is mind-altering for me — I turn into a complete (word I can’t use in a PG blog). I’m also having a lot of back pain as you can imagine, so I’m taking some tylenol with codeine, and that takes the edge off the pain and makes me feel like I need to sleep all the time, except …. I CAN’T because of the evil decadron, which is much like drinking 8 cups of coffee every couple of hours all day long. So much fun. I hope I can get off that after we treat the spine and brain with radiation.