Seriously. Can't I ever come to the table with any good news. Always doom and gloom. Well, get ready for it.
So, remember how I was saying that things have not progressing as well as they should? Still on that trend. I am currently still on Tasigna 800mg, but it doesn't seem to be having the desired effect on my cancer. The skin on my face is turning white...or maybe brown...I can't tell if the discoloration is too much pigment or not enough, it looks like my sunscreen application went seriously amiss...but the cancer reading (my BCR-ABL pcr) is still at over 8% as of the end of May. So I know that 8% sounds like I am doing better, like things are moving in the right direction, since I was at 14% at the beginning of the year, but the truth of the matter is that I need it to go down below .1%. This is the all important milestone that I am trying to reach - if/when I get there, it will mean that the cancer has very little chance of progressing. (Progressing? Huh? What does that mean? Well, if the cancer is not well controlled by the medication that I am on, there is a risk that it will progress into a more serious stage called Blast Crisis - which is very hard to treat, almost always requires full chemotherapy, and will almost always require a bone marrow or stem cell transplant - if the patient makes it that long.) So 8% - while it is less than 14% - is still miles away from where I need to be, especially since I've been on Tasigna for more than 7 months.
The one bright shining light throughout this has been that I haven't had to have a red blood cell transfusion since April 8th, 2016. My reds have been falling at a much slower pace, while the other counts (platelets, WBC) have stayed MY regular standard sucky, but somewhat stabilized. A transfusion MAY be in my future, however, as even though they have not been falling quite as fast, my counts have still been falling and I can feel that I'm getting low.
The PA that I have been shuffled off to in my new cancer clinic (oh yeah, that's right, they have handed me off to a PA to treat my refractory CML, that sounds like a brilliant decision, right?) has actually made a bit of a brilliant move, and sent in a referral for me to see a Dr. at UCLA. I've walked this road before. My original oncologist tried to get me in to see someone at UCLA, and the insurance company denied the request. Seems like second time was the charm, as I had UCLA calling me to schedule an appointment, before I'd even received the approval of the request in the mail. And, another shocker! they've already fit me into their schedule and I had my first office consultation.
Let me tell you how that went. UCLA thinks that I might need a bone marrow transplant. To which I replied, "Hmm. No thanks." Actually, what the Dr. I saw said was that I have had a suboptimal response to all of the medications that I have tried, thus far, and if one is not able to control the cancer level, and/or if my bone marrow does not start producing healthy cells, I MAY need a bone marrow transplant. She has suggested that my Dr.(PA) change my medication to Ponatinib (if you don't know about it, don't look it up, the warnings are scary AF), and that she would present my case to the transplant board for approval IN CASE the Ponatinib does not work, and I do, ultimately, need a bone marrow transplant. They are going to start the approval process with my insurance company, and get testing kits out to my sister and I for HLA typing. The smarties at UCLA are loading me up in the chute. But I'm digging in my heels.
IF Ponatinib doesn't do it for me, there is still one more currently approved medication to treat CML called Bosutinib. The Dr. at UCLA said that she doesn't like to prescribe it, as it has a tendency to cause "acute intestinal distress", but personally, if it becomes my last option before a BMT, I would much rather take my chances with some diarrhea than chemotherapy, radiation, possible transplant complications (like death), severe Graft vs. Host Disease, and on top of that, probably some acute intestinal distress caused by trying to - oh I don't know - KILL OFF all of my blood cells and replace them with new ones, that HOPEFULLY my body will not reject. That sounds like something that could cause some intestinal distress. Let's try to avoid that if at all possible.
So here's my plan: Ponatinib first, and hopefully that's the end of the story. Luckily, statistics that I've looked up regarding Ponatinib suggest that it is very good at treating refractory CML. (Hey, that's what I have!) Some studies have even suggested that as many as 65% of people with treatment resistant CML have benefited from Ponatinib. So, I'm going to go ahead be encouraged by those statistics, while cautiously preparing for a less than stellar outcome, and in the meantime try not to be such a bummer, man.
