So unfortunately, the foot pain turned out to be neither shingles or chemo-induced neuropathy, but instead the doctors think it is from a compressed nerve in my back (ultimately caused by the cancer growing there recently). This data combined with a tumor marker that increased 50 points in one month really made me realize that it was time to jump ship and hold my breath as I plunged into the unknown.
So the "unknown" entailed first getting some pain relief, to do this the radiation oncologist is going to irradiate a large portion of my SI joint in my right hip to try and hit the presumed trouble spot. This would be alot easier if the trouble spot wasn't so elusive, as we've never been able to see or measure anything abnormal in my nerves or my pelvis. To test my nerves I had the funnest test yet (sarcasm), its called EMG- and it measures nerve function. To do this they either shock or stick needles into your muscles and zap you while they take measurements on a computer. And all for nothing, as it didn't give us any information. So we are taking a stab in the dark, hoping to find some relief if we kill off some of the cancer. This type of radiation is a much lower dose than I had to my chest wall and it will be given over a shorter time frame, only 10 days instead of 6 weeks. So it will be everyday for 2 weeks, then I get a week or two off and then we will start a new chemo regimen.
At first, the 50 point jump had me terrified, but when I look back at it and the other lab tests together, there is really only mild progression. My other organs appear to still be healthy (although one ever knows), and the cancer seams limited to the bones. Perhaps this was just the sort of "bad news" I needed to make me look optimistic for the next therapy. So the next one will probably be another Her-2 therapy, trade name is Perjeta (aka pertuzumab) which is a relative of trastuzumab (trade name herceptin). But this drug has only been FDA approved when given with a taxane (abraxane, taxotere, etc), so looks like I will be loosing my hair again. So I'm shopping around online for a nice wig for my sister's wedding. For years now, I'd assumed I would one day loose my hair again, so this really wasn't too much of a shock. The biggest emotional toil is the disappointment that Kadcyla didn't last longer and that we burned up another treatment option. I have to remind myself, that it only takes 1 correct drug to make a cure..... and you have to go through lots of treatments before you find that lucky one.
I have been fortunate in so many ways already, my cancer is slow growing enough that I will get to sample a great many therapies, one of which could be my magic bullet. I am also very fortunate that my tumor markers didn't sky rocket, as I've heard of them being the 10s of 1000s. I also have a very good friend whose story reminds me of how prayers are answered...... My friend was diagnosed with leukemia many years ago and at that time the best treatment option was a bone marrow transplant, so she had her siblings tested and prayed to God that he would find a match. Well, God did not answer her prayers just how she'd have liked and there was no match that turned up and she never had that bone marrow transplant. Instead she received a cytokine therapy that had such horrible side effects that she almost died. She stayed on the therapy as long as she could, and just as she was about to call it quits, a clinical trail opened up and this new drug became her best friend for now over 8 years. Notice how God did attend to her needs, but he did not answer the initial prayer of a bone marrow match, as it was not part of His will. He had a far better therapy in mind, and he used what therapies existed at the time to stretch out her survival until the trial opened up for her. Amazing, I love the inspiration in this story.