The Countdown Begins

T - minus 12.  And so it begins.

On Wednesday, September 5th, I will be admitted to the hospital to begin my stem cell transplant conditioning therapy.  I will be having sixteen doses of intravenous Busulfan, spread over 4 days, and two days of Cytoxan.  I'm going to have a Picc line inserted into my arm on Wednesday and will start my first dose of Busulfan that night.  The transplant will take place either on September 13th, or 14th, just depending on when the cells get there.  My coordinator told us that it is a very anti-climatic event, as it is a very small bag of cells that is given like a blood transfusion.  I've had all of my pre-transplant testing, have a "perfect" match unrelated donor, and have signed all of the scary consent forms.  This is happening. 

I feel...not ready, but kinda like I should have done this years ago.  The hardest part for me will be being away from my home for two full months.  I've been told to expect to spend a month in the hospital, and then a month in temporary housing adjacent to UCLA.  For some people being in the heart of LA would be exciting.  For me, it's hell.  I'm a true mountain girl through and through, and the fact that I'm going to be missing the majority of the Fall season in the mountains makes my little heart sad. 

Fall 2017

I will suffer through, mostly because I don't really have much of a choice.  I'd much rather be home hiking our little section of the Pacific Crest Trail, watching the leaves turn, and the sage bloom, splitting and stacking firewood, and waiting for the first snow...but for this year, for this season, I will endure so that I can enjoy all of those things for many Falls to come. 

But goddamn, it's going to be hard to be away from my home and these little faces for so very long.

Paco & Beeker

Miss

Trying to get my fill of everything.  Cat love and snuggles.  Chocolate cake.  Jacuzzi's under the stars.  Watching the sun rise through my bedroom windows in the mornings.  Hiking in the evenings.  Kisses and holding hands.  Having hair...

I just keep telling myself that it's only a temporary absence.  It's the only way I'll make it through.  

Skipping Ahead

Reading back where I left off, it's hard to know where to start.

I'm going to have a stem cell transplant.  It's happening soon.  Next month.

I have not had a catastrophic loss of response to my current TKI, but it is failing.  The tests that measure my cancer are creeping up consistently, and there is no telling how long Bosulif is going to continue to work to suppress the cancer proliferating cells, and prevent them from going wild again.  I have tried and failed Gleevec (imatinib), Sprycel (dasatinib), Tasigna (nilotinib), Iclusig (ponatinib), and am now losing response to Bosulif (bosutinib).  There are no other currently approved TKI's to treat CML, so I'm left with little choice.  If I lose complete response to Bosulif, and my CML goes into Blast phase, it will significantly reduce my chances for survival.

I have been experiencing more minor infections, increased fatigue, and my FISH tests have gone from a low of 20% last October back up first to 26%, and in June, up to 29%.  That means that out of 100 cells that they looked at under a microscope, 29 of them were positive for CML.  That's nearly one in every three.  Last year, it was only one in every five, so it's a slowly-moving, yet alarming trend.  (The bcr/abl PCR test has also gone up from 3.6% to 5.6%.)

I've spent the past month or so racing around trying to prepare for a nightmare.  Trying to smooth the way.  Stocking up, cleaning up, eating up.  I don't think that you can ever be fully prepared for something like this.  I've done my best.  Most people don't even get that chance.

There are undeiable risks. I just keep trying to remember, individual results may vary.

The Median Isn't the Message

I intend to rage.

Keeping On

No news is no news.

My January appointment at UCLA came and went. My PCR ticked incrementally down from 3.7% IS in August 2017 to 3.6% IS in January.  So, not really down by leaps and bounds.  A bit disappointing progress for an additional 5 months on full dosage (500mg) bosutinub.  Progress is progress, however slow, small, or incremental it may seem; I'll take it.  I again chose to delay bone marrow transplant preparations, in favor of continuing on my current treatment.

Chose is really the optimum word there, as by choosing to forgo a transplant at this time, I am essentially going against the recommendations of my doctors.  I've found more peace with the decision, and am committed to continuing TKI treatment until or unless that option is no longer feasible (like, if my PCR starts going up.)  My UCLA doctor has not contacted me to make a follow-up appointment, so at this time there are no impending trips to Los Angeles in my foreseeable future which, quite frankly, makes me ecstatic.

I have not had another PCR test since January, but will firmly suggest/demand that my regular oncologist order one when I see him again in May.  I have had subsequent FISH test, which came back higher than the previous - which is decidedly NOT GOOD - but not yet cause for alarm.  My FISH in October 2017 came back with 20% cells positive for the BCR/ABL1 translocation.  FISH performed in March came back with 26% positive.  The lab technician noted "There is no significant change from the previous studies, when the same abnormality was observed.  This result is suggestive of persistence/recurrence of the abnormal clone."  All other blood test results were normal.

So that's how I live.  Hope for the best.  Do those things that are within my power to tip the scales in my favor.  Live life.  Try not to sweat the small stuff.  Try not to sweat the big stuff, either.  Keep on keeping on.

Alive and Kicking

Still alive and kicking.  I know that when a cancer blog goes quiet for several months you start to wonder.

On the surface, largely ignoring the fact that I have cancer.  Deep down, minorly freaking out.

PCR test in August came back at just over 3% IS, which is the lowest PCR that I've ever had.  Same song and dance ensued.  Doctor strongly encouraged proceeding to transplant, I dug in my heels and asked for more time.  Since I am ultimately the decision maker; time reluctantly granted.

Regular oncologist is useful for writing prescriptions, obtaining prior authorizations, collecting copay amount, and deferring everything else to UCLA oncologist.  Ordered a FISH test, instead of PCR for testing in October.  FISH test not quite as useful to me, in terms of measuring response, since I've only ever had one other FISH test on peripheral blood, and several PCRs.  Anyway, FISH results reported 20/100 cells positive for the Philadelphia Chromosome.  So, 20% cancer.  Most discouraging thing about it was the observation by the analyst:  "Although this result suggests a change since the previous studies (2016), when 42-95% of cells showed a Ph, it is consistent with persistence/recurrence of the abnormal clone."

Simply put - three and a half years, and five different treatments later - cancer is still there.  But, I mean really, putting it into perspective, WHAT ELSE IS NEW? 

Next appointment with UCLA is looming on the horizon.  I've had two minor infections this month alone.  I haven't had any blood work since October.  Totally ostriching, trying to enjoy the holidays, and swallowing my pills everyday. 

And life goes on.

Dodging Bullets

My appointment extravaganza at UCLA did not start off well.  Firstly, it took us almost five hours to get there.  So I was over an hour late for my 7am appointment.  I called as soon as I knew that we weren't going to make it (due to some accidents, and terrible monday morning traffic), but no one was in to answer the phones yet.  So I called right at 7am, and spoke to someone nice that told me to just try to get there as quickly as I could, and they would squeeze me in.  Whew.

So at about 8:15 we finally got in and parked, and I went to have my echocardiogram and the girl at the desk told me absolutely not.  We were much too late, and they could not - contrary to what we had been told - fit me in; I was going to have to reschedule.  Arg.  So basically, I got up at 3am, had been on the road for 4+ hours for no reason at all.  She was pretty unyielding, and it seemed like there was no way it was going to happen, so I walked away, and went on to complete my other scheduled tasks for the day.

Went down and had a chest x-ray - which took a total of less than ten minutes, from start to finish.  Moved on and had labs drawn - the tech asked what I had done to make my doctor mad, as the order was for 9 vials, and one pee test.

Keith and I were starving, but I had an appointment scheduled with the social worker at 10am, so we didn't have time to jet off and find something to eat.  The social worker is my favorite person so far that we've met at UCLA.  Great sense of humor, great source for information - she gave us info on discounted housing, what to expect timeline-wise post transplant, and listened to our concerns.  This appointment ended up going long, and we were with her for over an hour.

Next up was more labs (just 3 vials this time) to test BCR-ABL, and another superfluous CBC and metabolic panel, then Keith and I were finally able to go get something to eat before my scheduled 1:30 appointment with the Oncologist.

Turns out, going out to find something to eat in west LA at noon is a shit show.  Every thing was super busy.  We ended up at a filthy Chik fil a.  The food tasted good - but again - we were starving, but the facilities were so dirty.  They only gave us one napkin apiece, and it was just generally loud, unsanitary and disappointing.

The fun continued with an appointment with my Onc.  She came in and told me that she was concerned about my ability to stay on Bosulif because of the rash that I got, and they she recommended that I proceed to transplant.  They have identified three 10/10 matches for me, but she has not chosen the best candidate yet.  Once transplant is decided upon, depending on the donor's schedule, I'm looking at a timeline of 4-6 weeks before the transplant takes place.  Whoa.  Just whoa.  (I totally expected her to say 4-6 months, and I'm pretty sure that my face drained of all color when she told me this.)  I suggested that since I had not had any further adverse reaction to Bosulif, that I would like to stay on the drug for 2-3 months to see if it could be effective for me.  She agreed to call me when the test results came in for my BCR-ABL, but also expressed her doubts that Bosulif would have had any effect on my levels, considering I'd only been on it for a month (which included a 4 day drug break due to rash).  I felt sick to my stomach, knowing that I was facing a summer in the hospital.  I was so thankful that Keith was there with me so that he could ask questions, and hear first-hand what the doctor had to say.  So much gets lost in translation when I'm trying to re-convey everything that was said.

The cherry on top to my already stellar day was a 4pm pulmonary function test, which crushed the last shred of hope that we had to get out of LA before rush "hour" traffic.  The test was...interesting.  A lot of breathing into a machine that measured my breaths, exhalation, and lung capacity.  At one point the tech asked me if I had asthma - which I took to mean that I was failing the test, as I do not have asthma, as far as I know.  (I've always had a little trouble catching my breath when exercising hard, but had attributed it to being overweight and out of shape.)

We left LA around 4:30pm and were able to stop for dinner,and make it home by 9pm, so I feel like we did really well traffic wise for the end of the day.

Digesting the news that I was looking at having a transplant in a month or two was incomprehensible, and we were both sad, quiet, and subdued for several days.  Who was going to take care of our cats?  How were we going to be able to afford it?  What was I going to do about work?  My health insurance?  Who was going to take care of the rental house?  Who could we get as an alternate care giver while I needed constant monitoring?  Our heads were spinning, but we're both strong people, and even stronger together, so we knew that no matter what, we'd be alright.

Fast forward to Friday - four days later.  I was online shopping for wigs (I think I'm going to need a wig if I lose all of my hair.  I look like Axel Rose in hats/bandannas, and I'm not confident in the shape of my bare head) when my doctor called me.  She had just gotten my BCR-ABL test results and I was down.  Down to 5.6%.  Which - lets face it - is incredible.  When you consider that I was at 9% back in March, and I was only on Bosulif for one month, the test results are incredible.  She suggested that if I wanted to wait 3 months and retest, she was amenable to that plan.  Holy shit!  The doctor that told me that she didn't believe that the med that I was on would have any effect just gave me a reprieve?  A small miracle.

I hate to admit it, but I've got such mixed feelings about this result.  On one hand, I'm overjoyed that I'm finally having a good response to TKI.  On the other hand, historically, on other TKIs, I tend to respond for a number of months (usually 9 or so) and then my BCR-ABL climbs.  So am I really just delaying the inevitable by waiting?  Am I merely postponing a transplant, or have I dodged a bullet?  Is this just a temporary reprieve so that we can get our shit together and get better prepared, or is it the result that I've been so fervently hoping for for the past three years?

Too soon to tell.

A Rocky Start

Well that didn't go well.

I finally got started on Bosutinib April 13th.  The Dr. told me, but still, the nausea took me by surprise.  I was so sick the first day i drank a whole liter of diet seven up and little else.  It got some better, but I have to say that I experienced some level of stomach discomfort every day for the first ten days.  Then, on the tenth day, I broke out in a full body rash.  Hives everywhere except my face, feet and hands.

They didn't itch.

Hives everywhere.

My arms were the worst.  

It happened on a weekend, so I kinda just sat around waiting for things to get better.  Which they did not.  So, Monday morning, I high-tailed it into my pcp who gave me a steroid shot, and a prescription for a prednisone taper.  Finally got ahold of both of my oncologists.  Regular onc told me to wait for the rash to clear completely, then wait a week, and restart Bosutinib.  UCLA onc told me that this "reaction" was not a good sign that I would be able to tolerate Bosutinib for the long run, and told me not to be off of a TKI for more than a week.  She has also accelerated my sct/bmt pre-testing, and I'll be squeezing a pulmonary function test, echo-cardiogram, meeting with a social worker, and other various blood tests in - along with my appointment with her on Monday May 15th.  The steroids helped clear up the red patches, and within three days they were no longer raised and much less pronounced, so after a four day medication break I restarted the Bosutinib.  No recurrence of the hives, and the stomach issues, while still present, appear to be less severe.  So far.

It's been another ten days on medication, and the rash has not reappeared.  My only fear is that I will not have made very much discernible progress at my May 15th appointment, as I will only have been able to be on Bosutinib for about a month.  Beginning to face the reality that a stem cell transplant may be in my future.  I've still got hope, but this little episode provided a healthy dose of reality.

Three Year Cancerversary

Its my cancerversary.  Its not a day that I celebrate or want to re-live.  4/4/14.  According to wikipedia:

Number 4 (四; accounting 肆; pinyin sì) is considered an unlucky number in Chinese because it is nearly homophonous to the word "death" or "decease" (死 pinyin sǐ).

Well isn't that a gem of information.

I will be commemorating the day with a visit to the dentist.  Seems appropriate.