24sep2014

unfortunately we did not get good news from the mri and bone scans done last tuesday. there is one new site of cancer activity on the lower spine [there had been three small sites, now there are four with a small increase in the size of the three existing sites], one small and unknown type of activity on the liver, and another unknown on the sternum. not what we expected or wanted to hear, but consistent with the steady rise in one tumor marker over the last 12 months. we had been warned that the cancer has been known to morph and overcome the hormone blocker type drugs that have been used. and it did. we met with our radiation oncologist friday and diane will start a 10 day round of radiation starting monday. the point of the radiation is to address the increasing pain diane is getting in her lower back. the radiation does kill the cancer in the local treated area, but it is the chemo that holds the spread of cancer down [when it works] following the radiation, there will be a two week recovery period and then diane will start a new chemo cycle as explained below. the next chemo tool is called xeloda which is a brand name for capecitabine [chemocare.com/chemotherapy/drug-info]. it works on a different principle [not a hormone blocker] to defeat the cancer, but has a few more possible side effects which is why it is not used immediately. this drug comes in the form of a pill taken in a three week cycle twice daily for two weeks, then stop for one week, then repeat cycle. it has the usual list of side effects plus a few extra and no way to know how a given patient will tolerate. it is relatively new to the game and diane will have to do a blood draw every three weeks along with an oncology visit [she's been doing a four week cycle for the last 6 months] in order to monitor the effects of the drug. but wait, there's more..... as it happens, our oncologist is participating in a clinical study which pairs xeloda with jakafi [ruxolitinib]. jakafi is already fda approved for treatment of myelofibroisis [bone marrow disorder] but not breast cancer. diane has been screened by her oncologist and is qualified to be one of two participants from scrippshealth. she will be one of 150 total participants from around the nation. 75 of the participants get the pair of drugs, the other half get xedola and a placebo. the choice is random and unknown by the participant or the attending oncologist. we don't know yet how many weeks the trial goes. there is evidence that the two drugs are more effective than the xedola alone and along with safety issues is why the drug company is going to the expense of the trials. of course there is a 50/50 chance that diane will get the two drug combo, but at worst, she will only get what she would get even if she doesn't participate in the study. the only down side [other than the potential side effects] is that the trial requires one additional blood draw about half way through the 21 day cycle. all this upends our plans for long distance rv road travel while our house is rented out from 15oct14 to 15jan15. now we'll be limiting our rv trips to a 300 mile radius [more of a semicircle of course] of san diego so that we can leave the 5er wherever we happen to be and do a round trip to sd in a day or two. fortunately, we're in so cal and 300 miles will get us to a lot of interesting rv camping areas. we still plan on doing thanksgiving in bellingham, with gretchen and family, by air, and xmas in arcata, with michael and family, by road. of course it is possible we'll do some short term trips by air.. we're continuing with the rv trips because diane does better when she is out and about. this is also a good time of year to hang out aboard our boat, even if we're not going anywhere. so the options are many and we'll have to wing it as to what seems most appropriate at the time. and that's life as we know it. stay tuned..