Out of the Frying Pan, Into the Fire

Being on 50 mg Sprycel was nice.  Nice to not have to watch the bruises bloom on my arms with the slightest bump, and nice to be able to go more than a couple of weeks without a blood transfusion.  Alas, it was not meant to be.  While my blood counts initially recovered on a lowered dosage of Sprycel, they eventually began to fall again, and my PCR - the test that measures the percentage of leukemia cells present in my blood- tripled in a matter of six weeks.  

So here I am again, back on a full 100 mg dosage of Sprycel, with blood counts falling faster than ever.  I've had a total of five blood transfusions so far this year, and am fully expecting to be needing another in the immediate future.  But, now, even that is complicated.  I had an allergic reaction to the a transfusion I had in September - 5 days worth of fever, chills, and diarrhea - so I now need a mega dose of iv benadryl to make it through.  The last transfusion (October) went off without a hitch, although I had to fight hard to stay awake.  For those that have never had iv benadryl, as soon as they administered it I felt immediately drugged.  My tongue felt too big for my mouth, my eyes wouldn't keep up with my brain, and I had to consciously try to figure out if I was breathing.  (I was.) 

I'm not sure what exactly went wrong, but, apparently the more transfusions that you have, the more chance there is that you can develop antibodies post transfusion that recognize the donor blood as foreign, resulting in the immune system attacking the donor red blood cells.  I think that this is what happened, as two weeks post transfusion, my blood counts were at pre-transfusion levels (hemoglobin was low at 6.9) and I required yet another red blood cell transfusion.  (I usually get four to six weeks between transfusions.)  There has to be a better way, right?  Apparently not.

My doctor has decided that I need to see a Specialist as I am not a "typical, easy case" and in his words, he'd much rather have "someone holding his hand" regarding my treatment.  I'm all for it.  Waiting for my records to be sent over for a specialist appointment at Loma Linda.  Waiting, and waiting.  I do an awful lot of waiting.

And so, I'm back in the same predicament - the same f'd up cycle - except it seems to have become a bit more accelerated, with blood counts at record low levels, and staying there, and PCR still well above 1% after over 18 months of treatment.  In case I haven't mentioned it, having cancer sucks.

Partly Sunny Skies

This post is long over due.  A lot has changed since my last entry.  After months of low blood counts, I hit an all time low in July with my hemoglobin clocking in at 6.6.  That's about half of normal.  That's like,"she could have major organ failure at any time" levels.  I felt tired, but not any more so than usual.  Still schlepped it to work everyday, AND Keith and I rode our bikes about 4 miles to see the fireworks on 4th of July.  What can I say?  I'm a champion.

Due to dangerously low counts, another blood transfusion ensued.  Thank you to the person in Arizona that helped to keep all my systems functioning for another couple of weeks.  (Keith and I like to make a note of where - which state - the blood I get comes from, and wildly conjecture about, and do hilarious imitations of, the imagined person that donated it.)

Finally, my Dr decided that enough was enough, that something had to give, and has cut my Sprycel dosage in half.  Whereas I was taking 100mg daily, I am now swallowing pills half that size.  And...drum roll please...on one front, at least, it seems to be working.  I've had two follow up appointments since changing dosage, and both my platelets and my hemoglobin have inched their way up.  Incrementally. Side effects so far seem to have been regaining a little bit of color in my face and lips, and Keith not checking my breathing every morning when he wakes up to make sure that I'm still alive.  It's not a big "ta-da" moment yet, but most definitely, it feels like the sun is peeking out from behind the clouds and shining on me, if only a little bit.

My BCR-ABL (cancer levels) are still higher than I would like seeing as how I'm 16 months post diagnosis.  Most Dr's would like to see your levels at .01 by 18 months, which is a milestone of treatment referred to as "major molecular response".  Considering that mine was 9.8% when last measured on 7/2/2015, I most likely won't hit that deadline.  As long as I continue to go down, and do not have a spike on the lowered dosage, I'll be happy.

All in all, thank goodness my blood counts are beginning to stabilize, I'm feeling a bit more energetic (Keith and I went kayaking last weekend), and life is becoming a bit more normal.  Don't get me wrong, I'm still on the two week blood draw schedule. (I'm there so much that the receptionist knows my name on sight.)  And my blood counts are still nowhere near "normal" - if a Dr that didn't know my history read my labs, he'd probably poop his pants and wonder why I haven't been hospitalized - but I'm making forward/upward/positive progress, and that's more than I've been able to say for a long time.

Forecast - Mostly Sunny.

Hurray.

The Sun Will Come Out...Tomorrow

On the home front:
So that "vacation" didn't turn out quite like I'd planned.  I'd expected to be reveling in the joy of infrequent doctor appointments, and a fatter wallet from a couple if "co-pay-less" weeks, but our sweet kitty was attacked by a coyote on 6/13/2015.  After multiple surgeries, two weeks of wearing the cone of shame, and the care of his angel Aunt Cathy - who has saved his life, and ours, multiple times and on multiple occasions these past couple of weeks - it looks like he is on the mend.  Every day that he feels better, he's a little more of a tyrant - so by that formula he's been feeling really good for the past couple of days.  Keith has been a saint, waking up with him in the middle of the night to take care of kitty cat bathroom emergencies, sitting perfectly still for hours while Bobby naps on his knees, and carrying him around the house like a taco - with his little cat bed folded in half around him.  Meanwhile I dispense medications (down a reluctant cat's throat), wash countless loads of laundry, and sleep through his midnight meows.

On the cancer front:
Living with a chronic disease is not an easy thing.  Every time I see the doctor, every time I have labs drawn, I'm hopeful that things will be better.  Maybe I should reconsider my basic approach.  In the words of Llyod Dobler from Say Anything, "If you start out depressed, everything's kind of a pleasant surprise."  Maybe that's my mistake.  Anticipating some great rebound; an amazing recovery - when the truth of the matter is that I have cancer.  Not only do I have cancer, I have a chronic cancer - a cancer that can be treated, but cannot be cured.  It's a tough pill to swallow - knowing that I will always have cancer.  Even if it's only in a minuscule number of cells, it will always be there, insidious, lurking, waiting for an opportunity to gain the upper hand - if I let it.  (Don't worry.  I'm not going to let it.)

Not a lot of you know this, but I went and got a "second opinion" from another oncologist last month.  It was a weird messed up situation, because it was in the same practice - the same office - as my current doctor, and I actually ran into him immediately following my consultation.  I had the new doctor review my treatment, my status, and my concerns.  He told me that the only thing that he would change about my current treatment was that he would run a Kinase Mutation test, in order to guide the selection of the medication that I am on.  Oh, and don't worry, he'd let my oncologist know.  (So much for keeping my concerns about the treatment that I was receiving on the down low.)

After much confusion about ordering the correct test from the lab, the results are in, and I do have a mutation.  The mutation that I have is called an "insertion" mutation.  This mutation indicates a resistance to imatinib (Gleevec) which makes sense, considering my prior Gleevec history.  All research indicates that Sprycel (which I'm on) Tasigna, and newer TKI's will work well against this mutation.

And as far as I know, Sprycel is working well.  Too well.  Blood counts are low again.  For those of you that are keeping track:  As of 6/23/2015: Hemoglobin is at 8.7 (not too low, but consider, I did have 2 units of blood transfused on 6/6/15.)  Platelets are at 35.  Abysmal.  And ANC is 700.  Which is also concerning.  Last week, I agreed to another shot of Procrit, and my doctor agreed to letting me go two weeks between appointments.  Negotiation.

One of the hardest parts of having cancer, in this moment, is the fact that I never have any good news.  I constantly have to give Keith, my family, our friends, and my co-workers bad news about my health.  I try to down play it.  "Aw well, don't worry.  I'll do better next time."  I've been using that line for too long now.  The truth is I'm tired.  I'm covered in bruises, and I live in constant fear of getting an infection.  Right now, cancer-wise there is no good news.  I'm sure that there will be again, someday.  Just not today.

Maybe tomorrow.

I Get Knocked Down...

I can't seem to catch a break these days.

I truly expected that my blood counts would have stabilized last Friday, but they all came in even lower than ever before, making it one of my most disappointing check-ups since beginning treatment.  Last week, Keith and I took a couple of walks (he's my regulator- he modifies his much faster pace to match mine, and makes sure that I comply with Doctor's orders, and don't try walk up any hills or anything CRAZY like that), and I felt good.  Felt like I was beginning to recover some of my strength and shake this awful fatigue and shortness of breath that has been plaguing me for the past couple of months - until I tried taking the stairs at the Doctor's office Friday.  (Ok, maybe Keith's right.  When I'm self-monitoring, I can't be trusted.)  Three flights almost killed me.

So I guess I should have expected...I guess that I should have known what was coming.  Hemoglobin (those lovely oxygen carrying red blood cells) down to 7.5.  White blood cell count (my defense against getting sick) down to 2.7 (with absolute neutrophils - cells that protect against infection) down to 810.  Platelets (the ones that keep me from bleeding out when I cut my finger chopping up veggies) down to 39.  All very lackluster - the hemoglobin count very concerning.  So concerning, in fact, that my oncologist decided to give me a shot of Procrit.  

Procrit is a red blood cell stimulating shot.  It's one of the drugs that Lance Armstrong used illicitly to increase the oxygen in his body, and give him a little boost to pedal faster and longer.  "Procrit (epoetin alfa) is a man-made form of a protein that helps your body produce red blood cells."  Sounds good right?  Well, it would be, except for this:   "Procrit can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use epoetin alfa. Procrit may also shorten remission time or survival time in some people with certain types of cancer."  So, yeah, there is that.

Side effects of the Procrit shot - which, by the way, was a stinging little mother trucker that they administered in the fat part of my arm, on Friday - was a headache that came on every time I stood up and moved around on Sunday, and a feeling like I was coming down with the flu.  Both had pretty much passed by Monday morning.  I also woke up with a petechiae rash on my hand, but that is more likely attributable to my low platelets than the procrit.  Petechiae is described as: "Bleeding under the skin that can occur from broken blood vessels that form tiny pinpoint red dots (called petechiae). " This is the third bout of petechiae that I have gotten since Easter.  So far, it has always shown up on my left hand, and has not been severe, so it wasn't exactly panic inducing.  Just another routine f'd-up side effect.  Not pretty, though.

Back to the Procrit.  Procrit has a "black box" warning, which is the strongest warning that the FDA requires for prescription drugs.  They're not sure about the long term effects of the drug, and the Procrit website even states, "Your tumor may grow faster and you may die sooner if you choose to take PROCRIT®."  Living on the fringe, eh?

As scary as that is, to be honest, no one knows the long term side effects of the TKI (tyrosine-kinase inhibitor) cancer drugs that most people with CML are currently taking.  Gleevec, the first drug approved for targeted therapy in CML was just approved back in 2001.  Sprycel (the drug that I'm currently on) wasn't approved until 2006.  So there are less than 20 years or so of research that monitor long term effects.  For all they know, everyone on a TKI could sprout wings and a tail during their 30th year of treatment.  So we are - those of us that are on these drugs so close to their inception - essentially, all guinea pigs, anyway.  Much better than the dismal 5 year survival rate of the past, so thanks to TKI's, at least I'll be alive to witness my transformation into a dragon at age 63.

Here's to hoping for a better week, with better test results on Friday.  In the meantime, know that "I get knocked down, but I get up again, you're never going to keep me down..." - Chumbawamba, "Tubthumping".

Down the Rabbit Hole

I've been seeing my oncologist weekly.  Trust me, it's not my idea of a good time.  He's probably getting just as sick of having to fit me into his schedule every week as I am of having to drive up and down the hill every Thursday and Friday.  Every week I have to have have my blood tested.  Today they took 4 vials, last week 1, the week before it was 9.  (It's like they make it up randomly.)  My blood cell counts keep dipping lower and lower.  I could tell at my last appointment that he was torn whether to let me continue to go another week without changing anything, or whether to take action.

Right now, my hemoglobin/red blood cell count is very low.  The normal range for hemoglobin for women is 11.7-15.5.  Mine has been slowly declining from 9.8 to 8.9 to 8.2 down on 5/7/15 to 8.0.  That's on the line of "must take action".  What it means practically, is that I'm severely anemic.  I get a tightness/heaviness in my chest from lack of oxygen.  (Red blood cells carry oxygen to all of your bodies tissues and organs.)  I told my Dr. that my heart was racing while I was hiking last week, and he said "Oh, no!  Don't do that!  No walking up hills!"  Dragging my butt to and from work everyday is almost enough to do me in, and when I try to do extra - like folding laundry, or mopping the kitchen - I can hear my heart pounding in my ears.  I'm getting headaches, occasional nausea, and simple activities like blow drying my hair make me feel worn out.  When I asked how low we're going to go, he said that we can go down to 7.  We'll see if I can still function if I dip down below where I am right now.  He also told me that I was looking very "caucasian".  I think that's his nice way of saying that I'm pale as fu**.  Upside - they did give me a B12 shot last week, and I feel like that helped give me a little energy for a couple of days.

Platelets also continue to be low.  Normal is 140-400, mine are sticking at 46.  Low platelets mean that you bruise easily (no pinching my arms, Keith!), bruise for no reason (hey, where ARE all of those bruises on my hands coming from?), and need to be careful about cuts and scrapes, as your blood may not clot well.

Besides the reds and platelets, my absolute neutrophil count has been low as well.  Your ANC are white-blood cells that pretty much make up your immune system.  My count dipped down to 936 (normal range is 1500-7800).  When you get below 1000 you are at a much greater risk of developing an infection, so it's important to avoid crowds, stay away from sick people, and be alert to any signs of illness.  When I left last week, my doctor gave me his card and told me to call him if I noticed anything unusual.  "Like what?" I asked.  "Like ANYTHING" he said.  This was a little freaky.  My doctor is not usually an alarmist.  I tell him I'm tired, he tells me I'm old.  I tell him I'm getting fat, he tells me I'm a renaissance beauty (not sure if I should be flattered or offended on that one) so when he tells me to call him if I feel weird, I know I'm living in the danger zone.

Keith and I were going to take a small trip for my birthday last week, but with my numbers so sketchy, and me unable to do very much physically, we've had to postpone it until I'm doing a little better.  Stupid cancer.

The one piece of good news that I did get is that they tested my BCR-ABL (cancer cell level) again on 4/30/15 and it has gone down to 12%.  Not only a step - a leap this time - in the right direction.  So at least I don't feel like it's all for naught.  At least I'm suffering for a reason right now!  And like I said, the doctor is confident that my numbers will begin to improve, here, eventually.  He believes that the Sprycel is working well to suppress the leukemic cells, and that it is just taking a little while for my "good" stem cells to realize that they need to kick into high gear, and up their production to make up for the deficit.

Meanwhile, "Either the well was very deep, or she fell very slowly, for she had plenty of time as she went down, to look about her, and to wonder what was going to happen next." - Alice's Adventures in Wonderland, Lewis Carroll

Accentuate the Positive

Numbers are in.  BCR-ABL number is down from 46% to 27%.  So the Sprycel appears to be working to bring my count back under control.  It has also been working to lower all of my other blood cells.  I found out at my appointment that I have pancytopenia - which in short means that my cell counts (my platelets, my white blood cells, and my red blood cells) are low.  What this means practically is that I'm tired, I bruise easily and don't heal well, get short of breath easily, and I'm more susceptible to getting sick.  This happens sometimes when leukemic cells are killed off, and the rest of your stem cells are not producing enough healthy cells yet.  My oncologist believes that this will regulate itself over time.  In the mean time, he is monitoring me more closely, and I have an appointment with him on 04/24 just to make sure that I don't dip into the danger zone, in regards to low blood counts.  As of 04/03/15 my platelets are at 69 (supposed to be 140-400), my white blood cells are at 3.8 (supposed to be 3.8-10.8) and my hemoglobin is at 9.8 (should be 11.7-15.5).  So I'm low all across the board.  He will not be testing my "cancer levels" again at this time.

I've been feeling frustrated with my lack of response and my possible *almost* relapse (when my numbers climbed significantly in January.)  I have found a great site for both info and support.  The Leukemia & Lymphoma Society website lls.org has a ton of valuable information about all types of leukemia and lymphomas, and their CML discussion board is active, informative, and a great resource for anyone looking for information or for anyone that has questions about their diagnosis, their treatment, side effects, or test results.

Current medicine is working.  Yay!  Cancer levels are going down.  Yay!  For the time being I'll try to stay focused on the positive.

In the Wind

So I've officially been on Sprycel now for thirty days.  Oh, the mouth sores.  For the past few weeks my mouth has felt like I ate a box of Captain Crunch, and then gargled with vinegar.  I've had no less than eight mouth sores in 4 weeks.  At the moment, I'm sore free, but I admit to that with reluctance, as putting that out in the universe may be just asking for it.

I've also stopped exercising completely.  My treadmill had a mass failure last month, and although Keith found me a replacement within two weeks, I really embraced the whole "sleeping in" thing, and have not been able to find the motivation, thus far to get back on the proverbial horse.  My energy levels right now are low, and so is my motivation.  Not exactly feeling spry on the Sprycel.  Luckily, with the recent time change, I have enough daylight left when I get off work to exercise in the afternoon.

Not that I do...but I could.

Also, luckily, I no longer feel ravenously hungry ALL THE TIME.  I've stopped eating like a wolverine -both in quantity and quality - (I hardly want meat any more at all...I could easily and happily become a vegetarian these days) so I'm hoping that paired with my newly sedentary lifestyle cancel each other out, and does not add to more weight gain.

So far, I've only been sick a couple of times on the new medication.  I've found that if I eat a carb rich meal before I take it, I feel much better, and can usually stave off the nausea.

According to all of the information that I've been able to gather about dasatinib (Sprycel) the side effects are mostly more mild than those seen with Gleevec, although there is the potential for more serious side effects.  Sprycel can cause both pleural effusion -  a condition in which excess fluid collects in the pleural cavity - and a more serious condition call Pulmonary Arterial Hypertension - which is

"a disease in which the pressure in a patients pulmonary arteries becomes dangerously high and puts a strain on the heart." 

Lets seer clear of either of those, eh?

I haven't seen the doctor to check my numbers...as you'll recall, the last appointment I had, I did not get a gold star.  At the end of January my BCR-ABL cancer measurement was at over 40%.  When you're looking for zero, forty is not good.  It's like getting 40% on a test...40% is a big fat "F" for failure.  So I'm kinda just swinging in the wind, here, right now.  Is the Sprycel working?  Or are my cancer cells growing out of control again?  All will be decided at my next appointment, April 10th.

Tune in for the dramatic results.

May the Odds Be Ever in Your Favor

No one knows this.  It's something that I've kept to myself thus far.  Way back, when the nurse first called me back in for more blood tests, and Lacey thought I might have leukemia, I sat in my bathtub and cried my eyes out, thinking about that Mandy Moore movie, "A Walk to Remember".  (It didn't help that, at that time, Lacey had the song from the movie as one of her ring tones on her phone.)  It's based on a Nicholas Sparks book, and Mandy Moore who is in her teens, dies of leukemia.  So even when I was telling myself that only old people and young children get leukemia, deep down I was terrified.

Firstly, I hate to admit to watching anything based on a Nicholas Sparks book...and second, and more importantly, I hate acknowledging my weakness.  If there is one thing that I've learned since I caught "the cancer", it's that you absolutely HAVE to stay positive.  BELIEVING that you are going to be okay, is absolutely your best and most lethal weapon.  (Maybe, your only weapon.)  It's really difficult, though, because cancer doesn't fight fair, and just when you think you've got it pinned, it flips you on your back.

So, I've been on gleevec since April 04, 2014.  I gained a complete hematologic response, and was working my way slowly, but surely, towards achieving a major molecular response, but something inside me (lets call it cancer) decided not to cooperate, and my BCR-ABL level spiked from 6.8% at the end of October, to 46% when measured on January 29, 2015.  My self checks failed me this time.  Maybe it's because my blood counts - with regards to my white blood cells, and my hemoglobin levels - are normal.  (Huh? How does that work?)  So...I have a normal number of white blood cells, but almost half of them are cancerous?  Talk about not fighting fair.

Not sure if the failure is due to building up a resistance to gleevec, or some sort of cancer cell mutation, but the new plan of attack is a second generation TKI called Sprycel.  I'm still waiting for my pharmacy and my insurance company to duke it out, so that I can get started on my new regimen.  According to my avid web browsing research of the last 72 hours, as many as 30% to 40% of people do not achieve an "optimal response" on gleevec, and are switched to one of the second generation TKI's.  In general, people tend to respond more favorably, with fewer side effects, and with a faster and deeper responses on Sprycel and Tasigna.  So here's to hoping that my non-conformist little body, will tow the line this time.

Oh, wait, make that big body.  Aside from the devastating news that my cancer is making an unsolicited comeback, I also literally tipped the scales last time, weighing in with a total weight gain of 23 pounds.  So, somehow, I got the kind of cancer that makes you fat.  I didn't even know there was such a thing.  I'm just that lucky.

Sprycel, I eagerly await your arrival.  Let's you and I team up and kick some cancer ass!