Another One Bites the Dust

My UCLA oncologist made good on her promise, and actually called me back with my test results last week.  My BCR-ABL pcr went up (which is the wrong direction for it to go) from 5% when I was there in November to 8% on March 2, 2017.  She suggested that we proceed to transplant.

Which is easy for her to say since by "we" she meant me.  I was a little bit dumbstruck as I felt that we had just discussed the plan of action, which was to switch to Bosutinib if my BCR-ABL came back higher.  I reminded her of the plan.  She again expressed that she felt that if Ponatinib did not work for me, that she was very skeptical that Bosutinib would be beneficial.  I straight up told her that I am not ready to "proceed to transplant".  My life is relatively normal, despite my cancer not being at "safe" levels.  I can't reconcile myself to undergoing a stem cell transplant until I have exhausted my available options.  Bosutinib is currently my last FDA approved TKI option, and I intend to give it my best shot.  That said, I know, and fully understand that having a transplant is now more of a probability for me.  

So why am I all bent out of shape about having a SCT when it could essentially cure me?  A transplant is not a decision that can be made lightly.  Besides a high mortality rate, there are a whole host of other complications that could arise.   From graft failure, organ failure, infertility, secondary cancers, all the way to death.  (Lookie here.)   It's hard for me to imagine going from my normal life, to locked down in a hospital for potentially 30+ days, and recovering from the most invasive medical procedure there is.  A realistic recovery time for a stem cell transplant is at minimum 6 months to about a year.  A FREAKING YEAR.  Some complications can last a lifetime.  So maybe you all can understand why I'm more than a little reluctant to jump right in when there is still a possibility (however remote it may be) that I could respond to drug therapy.  

Hopefully next week, I should be trading in Ponatinib for Bosutinib.  And hopefully Bosutinib will beat my cancer into submission.  Or remission.  That would be great too.

Hold your Horses

Where to start?  Honestly, I've been doing my damnedest to ignore my leukemia lately.  Continuing to take my daily pills, and have monthly lab work, but otherwise neglecting all things cancer related.  UCLA has a way of pulling me out of my little fantasy though, every time.

A couple of weeks ago, I received a call from my transplant coordinator.  (Oh, yeah, in case I didn't mention it, I apparently have a "transplant coordinator".)  She called to let me know that despite my sister not being my HLA match, that she had done a preliminary search in the world-wide registry, and it looked to her that I had AT LEAST ten potential matches.  This call elicited both relief and panic at the same time.  Relief knowing that if I do need a transplant, I will most likely have a good match.  Panic at the thought that I might need a transplant.  After she told me the good news about potential matches, she continued to let me know that she was working with my insurance company to get my pre-transplant testing lined up, as my doctor was prepared to proceed with the BMT/SCT.  Uh, what?  'Scuse me?  Shouldn't I have been the first one to know that?  So I voiced my concerns, and told her that I was in no way prepared to "continue to transplant" at this point.  Unaware that my doctor had not discussed this with me, she set me up with an appointment to talk with my doctor, so that we could get on the same page.

I have been metaphorically digging in my heels ever since.

So I went in with a game plan.  I wasn't going to be pushed into anything, especially something that would most certainly change my life, and even had the potential to end it.  I wasn't sure what my last blood work had shown.  I had tried to call for results, and left several voicemails on for several different people, but they seemed to disappear into the ether, as I never heard back from anyone at all.  So I told myself, "Self, if it was bad, like bad, bad - they would call you.  Take the fact that they are not calling you as a good sign."  And I let it go.  Which is so unusual for me, but I've had a lot of other things going on, so it was a bit of a relief to let cancer fade into the background for awhile.

I met with my doctor yesterday.

And it wasn't bad.  My PCR according to her, when I was tested back in November was at 5%IS at the UCLA lab.  (Slightly concerning - my PCR was 7%IS in January at my regular lab, so if accurate that is a step on the wrong direction.)  I went in ready to defend by position, but I didn't have to.

I told her straight that I didn't want to proceed to transplant until it was my last option, and I felt that if my current dosage of Ponatinib was not enough to keep my leukemia under control - which it has never been, by the way, under control that is, according to the National Cancer Network guidelines - I would like to either go to a higher dosage of my current medication, or switch to the last FDA approved drug available to treat CML - Bosutinib.  We agreed on a course of action.  If the blood work that I had done yesterday (which won't be back for a week or so) shows that my PCR percentage is under 1% we will continue as usual and put all transplant planning on hold.  If my PCR is still over 1% after 7 months on 30mg Ponatinib, we will switch to high dosage (500mg) Bosutinib, and test at 3 and 6 month intervals, while simultaneously continuing the preliminary preparations for transplant.  She let me know that she believed that if Pontanib didn't work, that she felt that it was unlikely that Bosutinib would work any better, but as long as my cancer does not show any signs of progression, she was willing to let me give it a try.

So that's where I am right now.  I am running out of viable drug options.  Next week, a single blood test will decide my fate.  If they ever call me and let me know the results, that is.