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.

High Opinions

Results are in from HLA matching.  My sister is not a match.

Cause that's how I roll, apparently.  The path of MOST resistance.  EVERY.  SINGLE.  TIME.

You know how people say that God doesn't give anyone more than they can handle?  Well, God has a very high opinion of me, apparently.

New appointment with UCLA in a couple of weeks.  We'll see what our next move is.

Stay tuned...

Testing...1...2...3...

Some days I ask myself, "Is this really my life?"  How many people have to drive an hour to have labs run every ten days?  How many people have to ask their family members for blood? (To get HLA typed?)  How many 36 year old's have to juggle "old man cancer" on top of a full time job, building a house, and planning to get married?  How many people with CML fail to respond to the miracle drugs that keep the cancer at bay for so many?

Oh, just me?  Ok, then.

I guess this IS my life.

HLA test kits came in the mail last week.  So weird.  HLA stands for Human Leukocyte Antigen - which is a test that identifies the unique properties of a persons immune system.  To put it simply - it's actually much more complicated - but essentially, HLAs differentiate "self" and "non-self" cells.  The cells that are identified as belonging to an individuals particular body are left alone to do their own thing; the cells it sees as foreign are attacked and destroyed.  HLA testing is used to determine compatibility for a Stem Cell or Bone Marrow transplant.  The goal is to find a donor with cells that match your specific HLA antigens most closely, so that the body does not recognize them as foreign and try to attack them.  During a SCT/BMT (stem cell transplant/bone marrow transplant) the recipients blood making cells are destroyed through chemotherapy and/or radiation (they keep on making cancer cells instead of healthy cells, so they're not doing their job right, anyway) and then the recipient receives cells from a donor that will hopefully grow and build a new cancer free blood making system.  Easy peasy, right?  Not so much.  They pretty much have to kill off the recipients blood making system, rendering the body essentially defenseless to any kind of infection, until the donors cells start to grow and multiply, and start to provide some protection.

So why does any of this matter to me?

The first Ponatinib results are in, and they are not as good as I had hoped.  If you'll remember, every couple of months I get tested for the amount of cancer that is still present in my cells.  I've referred to it as a BCR-ABL PCR test.  On Tasigna 800mg I'd reached an all time low of 4.003%.  I was hoping that Ponatinib would push it down even further, but alas, my measurement on 9/23/16 was 9.487%.  So, going the wrong way again.  (Ponatinib is supposed to be the major bad-ass of all TKI's too, so I just don't get it.)  The majority of people with CML respond well to TKI drug therapy, but I've never tested below 4% to date.

BCR-ABL PCR

So, in light of recent testing, it's one step closer to the SCT/BMT back up plan for me.

My sister is amazing, for those of you who don't know this.  I called her up Monday morning, made small talk about her children's parent teacher conferences, told her I had a bottle of apple wine for her, and casually slipped into the conversation that I needed a couple of vials of her blood, if she could spare it.  And like a lightening bolt, she made it happen.

I, myself, have been in "avoidance mode".  UCLA called me a month ago, and I refused to listen to the voicemail for three weeks.  I finally decided to be an adult about it, listened to the message that prompted me to schedule my blood testing, wrote the contact number down on a piece of paper, and promptly shoved it in the bottom of my purse.  Well, turns out that the transplant coordinator is better at her job than I am at being a responsible adult, and she called me again last week.  (To my credit, I did answer the call, so I feel like I should get some kind of consideration for that.)  She had blood testing kits out to me within two days.  Now, my plan was to let them sit in my cupboard for a week or so, you know, just to adjust to the altitude up here (that's not a thing, I made it up) and give me a little time to stew about it, but Lacey wasn't having it.  (When a person needs a SCT/BMT they first test all willing siblings.  There is a 25% chance that a sibling with the same mother and father will be a match.)  Time elapsed from when Lacey first learned about the testing, to the time they were being couriered to UCLA, was a total of about 2 hours.  Thank you to my little sister for being the grown up.

Now that the tests are in, I fully expect to hear from no one for the next month or so.  I'm not an urgent case, so it's very likely that no further steps will be taken unless something in my blood work goes considerably wonky in the not too distant future.

Which is not my plan.

I'm done with wonky.  I'm done with special.  Had enough of unique. I'd like to place an order for boring and predictable, please.  C'mon body, a little cooperation would be nice this time.

A Whisper

Well, I started Iclusig (Ponatinib).  The warnings and cautions seem to escalate with each new drug I take.  This one is the scariest of all, by far.  Not scarier than untreated leukemia, though.  I read through the package insert provided with my meds.  Lots of not good things, and dire warnings.  Then I folded the info sheet back up, threw it in the trash, and swallowed my first two pills.  I've been swallowing them for a little over five weeks now.  So far a few oddities...dry peeling skin on my face (weird), middle toe numbness for several days, freezing bum (don't know if it's related, but it's persistent - may just be the season changing), some bone pain.  None of the big scary's though, so I'm doing good.

Did you hear that?  I said I'm doing good.  I whispered it, actually.  I'm afraid to shout it from the rooftops yet, but so far, according to the blood work that I've had done (just regular monitoring, no cancer testing yet) many of my blood counts seem to be improving.  Hemoglobin - up.  No recent transfusions for me.  White blood cell count - up.  Just finally breaking into the "normal" range.  Platelets - sucky.  But the same sucky that they have been for the past year and more.  Two out of three?  I'll take it.

No news yet on if Ponatinib is working to reduce the leukemia cells.  Testing in a couple of weeks, so time will tell, I guess.  I do guess, and hope and pray, and whisper.  But I don't shout it out.  Not yet.  I'm not tempting fate.