It's Complicated!

     It has been an interesting couple of months and now we're on to the next chemo drug, which has been used before unsuccessfully. Cancer numbers dropped quite a bit the first cycle on the Bendamustine, then leveled out with just slight up and down variations in numbers.  However, after the third cycle, I broke out with hives and rash, which was troublesome to my Dr at UCSF.  The steroids at the beginning of the 4th cycle seemed to almost take care of it. However, enough was still hanging on, that the decision was made to move on to something else.  The hives began again about the same point in the 4th cycle, which I had started before my appointment with my UCSF Dr.  Now interject the Jadenu, which is the chelation drug for the iron overload.  I have started taking it intermittently to begin to reduce the iron overload from all the transfusions last year. The hives/rash seemed to get worse when I started taking that and it does cause hypersensitivity like I am experiencing.
     A low dose of oral Cytoxan daily and no steroids is now my treatment plan for what is hoped will be "maintenance".   My numbers, if we're able to maintain them, are at a livable place and it appears that we aren't going to get them any lower at this point.  However, close monitoring of my blood counts weekly will be done as this drug will lower those and then it will be a battle of keeping them adequate with either shots or transfusions.
     The reaction to the Jadenu may cause a discontinuation of that drug and the chelation process.  However, there are several things we're going to try before abandoning it altogether.  I already take Allegra everyday for allergies.  Benadryl will be added at night. If necessary, low dose steroid (Dexamethasone). Also, will spread out doses even more, if necessary, in addition to lowering the dose.  Have a window over the next few weeks to work on this before starting the Cytoxan and those side effects begin.
     Holly has been seen by my oncologist, who she really liked, and was reassured she did not need chemo.  He will be monitoring her every 6 months with specialized blood tests in order pick up a problem immediately.  There is a genetic counselor available through his practice, so a future appointment will help assess her particular situation. We are very thankful for this good outcome.
     All of the family were here last weekend!  Johanna and her two kids arrived for a month-long visit while her husband attends a required course.  They will re-connect at their new home in New York in August. Jesse & family came from a camping trip on the coast and have now headed home.  It was a busy weekend, but lots of fun with all 8 grand kids running around. It's a little like herding cats! But these are the days I fight so hard to stay alive to enjoy!
     It has officially been 9 years now since my diagnosis and prediction of 6 months to 3 years of life expectancy back in July of 2007.  We are so grateful for God's faithfulness to us and for the doors that have opened for tremendous progress in research and development of new drugs that have been available at just the right time.  We are so grateful, also, for my two amazing oncologists - local and at UCSF.  And, we are very grateful for our faithful family and friends, for your love and prayers.  Keep up the good work!