A little bit of housekeeping

Two quick things: a correction and an option.

The correction: On my last post, I mentioned that the results of the PALOMA-3 with news on whether Ibrance is helpful in Overall Survival (how long people live) in addition to Progression Free Survival (how long till the cancer evolves around it and grows again) are expected to be presented at ASCO this weekend.

This is not actually true! 

It's sort of half true, but that doesn't count for much.  The actual truth is that the results of PALOMA-3 will be (or have been) presented at ASCO this weekend, but those are aren't Overall Survival (OS) for Ibrance and letrozole.  They're actually Progression Free Survival (PFS) of Ibrance and Faslodex--the results are very good, and Ibrance more than doubled PFS over Faslodex alone, from a median of  3.8 months to 9.2 months, which is, as I understand it, an almost unheard level of improvement in cancer drug development.  It's similar to the improvement found with Ibrance and letrozole over letrozole alone and all points to Ibrance being a really big deal in the treatment of hormone receptor positive metastatic breast cancer.  A huge big deal.

For me, personally, it's probably not that useful since I've already flunked out of Faslodex, but it will be big for a lot of women in the future, so that's really good news.

The study results I was thinking of about Overall Survival with Ibrance and Letrozole are actually Phase III of the PALOMA-2 trial (not phase II of the PALOMA-3 trial, but maybe you can see where I went wrong there!) are due out in October.  And I'm still anxiously awaiting those, though even more anxiously awaiting getting to the my next scans and seeing how Ibrance and Letrozole are working for me!

And the option:  I've just made a Facebook page for this blog for people who like to use Facebook to follow blogs.  If that's you, here you go!  You can go directly to www.facebook.com/mepluscancer or click the Facebook icon to the top left, and (either way) "like" the page.

If that's not you, or you just don't want to follow this one there, no worries.  And I promise this is the last I'll mention it.  And there will be no "give-aways and please, please, please like it" posts.  Because I don't like those.  And also, this is a blog about metastatic cancer so what exactly would I give away, anyhow? (Can you see it now?  300th person to like it gets an empty bottle of letrozole, 400th gets an Ativan info sheet and an empty bottle of Ibrance--whoot!)

The most wonderful time of the year

Today is the first day of the 2015 Annual Meeting of the American Society of Clinical Oncology.

It's a time when all kinds of cancer researchers, cancer drug companies, and cancer healthcare professionals present papers and reports on their research and clinical trials, and already some releases are hitting the mainstream news.

There are other meetings throughout the year that have similar presentations--the results of the PALOMA-2 trial were released at last year's American Association of Cancer Research meeting, which resulted in early FDA approval of palbociclib/Ibrance, which resulted in me being able to take it now--but advance press on this one has been really promising.

And results on PALOMA-3 with news on whether Ibrance is helpful in Overall Survival (how long people live) in addition to Progression Free Survival (how long till the cancer evolves around it and grows again) are expected to be presented.  Obviously I'm very interested in news about that one!

A lot of the research they will announce is still years away from being usable as cancer therapy, but it's progress and a sign that there are new things coming.  And, hopefully, there will be something good coming to take the place once my cancer evolves around Ibrance.  Maybe even something more permanant.

My brother sent me a link to one article based on brand new research with the subject: "Hold the line!  Help is on the way!"

I love that!  That's the plan, that's the goal, hold the line long enough for the next army to arrive.  

And this weekend, we should get a first look at some of the armies making their way to my battlefield.  And God willing, there will be at least a few butt-kicking regiments all geared up and getting ready jump on in and save the day.

Numbers that may or may not mean something

M.C. Escher - No. 45 Angels and Devils

Have you ever watched those videos where an artist starts drawing something and at first you have no idea what it's supposed to be but at the end, with those final last strokes--presto!--suddenly it all comes together and turns into something?  They used to do a lot of those on Sesame Street with the voice-over kids guessing all the while at what it would finally turn out to be.

Health care is like that, too.   

Sometimes there's a lump or bump, maybe a random, fleeting pain.  You don't think that much of it at the time, but when it gets worse or other things happen, you get a diagnosis and in hindsight you can see how it all fit together.  Pieces of the whole.

I'm thinking of that because my tumor markers have gone up.

Long time readers and those of you also involved with cancer will know that tumor markers are something some cancer tumors give off into the blood.  They aren't present for everyone with breast cancer and they aren't 100% reliable even if they are present, but I have them and they seem to be pretty reliable, as verified by the CT and bone scans (more about tumor markers here).  And, basically, the more active the cancer, and the more cancer there is, the higher the tumor markers are.

And mine have gone up a lot since we last tested them in early April.

I'll admit, when I first saw the high number, higher than I've ever seen it before, I panicked.  Damn you, Ibrance, you stupid punk, not even worth a month? Really?!?

But then I started thinking.  And the real truth is that I have no idea what it means.

It's true, in general, high tumor markers are bad, but a few things I was thinking of:

1. Anti-hormonals like Faslodex and Letrozole (with or without Ibrance) can take a while to make a difference.  That's why if it's a crisis, they go for radiation or chemo, not anti-hormonals.  The problem for me is that I don't know what "a while" means here and I don't really know what's supposed to happen in the meantime.
2. I've read that sometimes anti-hormonals can cause tumor "flares" when you start taking them, where the cancer activity ramps up sharply as the tumor starves for estrogen, but after the flare, the anti-hormonals start to make a difference.  But it isn't true in all cases and I don't know if it's true at all when you switch from one type of anti-hormonal (like Faslodex, an estrogen receptor downregulator) to another kind (like Letrozole, an aromatase inhibitor).  So these numbers could be a sign of a flare indicating effectiveness.  Or they could be a sign that the cancer is just plain growing, indicating ineffectiveness.   Who can say?
3. I know what my tumor markers were in early-April and I know where they were 6 weeks later, but the thing is I have no idea what they were doing in the meantime.  For all we know, they could have gone up a lot higher between the two points.  For all we know, this newest high number could actually be a lovely, Ibrance and Letrozole led drop from whatever even higher point they were at in between. Really I have absolutely no idea.

There's a reason I don't practice medicine.  Clearly, I have no idea whatsoever what I'm doing.  And maybe some people really do have that Earth-Mother-Goddess ability to "know their bodies" and listen to some sort of soft, sweet voice of confident intuition telling them what's going on, allowing them the supernatural ability to "know their bodies best."  I think that would be really cool, but I wouldn't know for sure because I've never, ever had such a thing happen to me.  Ever.

But I did come up with one good thought of my very own (or maybe that's my soft, sweet voice of confident intuition finally weighing in, but probably not).  I don't practice medicine, but I know someone who does.

So I went back onto the new Electronic Medical Record site where I saw the high tumor marker number and sent a message to my oncologist asking her what, if anything, we were supposed to make of this number.

And she told me, basically, that it's just too soon to tell.  It's too soon to know if the drugs are working, too soon to know which piece of which picture this one is going to turn out to be.  She's not worried right now and it's no reason to switch drugs right now.  Because, right now, it's just too soon to know.

So this picture could end up being "Dawn of Utopia" or it could end up being "End of an Empire," but right now, no one but God himself can tell where this one's going.

The good news is it isn't bad news. The bad news is it isn't good news.  And beyond that we just need  to wait and see what kind of news it will turn out to be.

Ibrance cycle 1 is in the books

One of Theo van Hoytema's
astonishingly beautiful calendar pages

This evening I took my 21st Ibrance pill, the last in my first bottle.  That makes it the last Ibrance pill of this first 28 day cycle, which will be complete after the next 7 days of only Letrozole.  Then I pop open bottle number 2 and start the whole thing over again.

Other women on Ibrance report that the week off is usually a good week with better energy, a lessening of side effects, and a general return to feeling better.

As I mentioned before, I think I'm tolerating this pretty well all in all--but I'm still really excited at the idea of hopefully not dealing as much with some of the things I'm having during these next 7 days.

The side effect I'm most hoping to get rid of?  Believe it or not, my hands and feet are super itchy!  It's a weird one, for sure, and I'm not entirely sure it isn't at least partly due to Letrozole and Lupron making sure there's no estrogen circulating in my body to provide any of those youthful benefits like healthy skin, but the itching started with the Ibrance and some other women have reported similar issues, so I have hope that I may be able to get a few days of improvement out of it.

The side effect I'm most curious to see if I can get rid of? I struggle with lymphedema in my right hand and arm and I've had a bad flare up for the past 2.5 weeks or so.  Lymphedema is swelling caused by removing the lymphnodes under my arm as part with my mastectomy--7 of the nine were filled with cancer and some had the cancer growing out and around them, so I'm glad they're gone although it does mean that I have to wear a compression sleeve and glove whenever I'm awake.  The flare up is not something reported as an Ibrance side effect and I wonder if it isn't more of a symptom of the stress my body's been under with traveling, a nasty cold, and warmer weather.  But the timing with Ibrance is suspicious so maybe this will help.

I'm glad I have Ibrance, and taking it for the past 21 days hasn't really been that bad, but that doesn't mean I'm not glad to have a few days without it!

Ibrance (second impressions)

My cold seems to have finally gotten better. I suspect this is in part because my good husband went out and got me some good cold medicine which allowed me to finally get a good night's sleep.  And in part because eventually whatever I have for white blood cells seem to have finally gotten the upper hand in the 2-forward-1-back war I was waging against the head cold.  I'm almost afraid to speak too soon, but I think things are solidly in the right side of wellness, head-cold-wise.  Cancer wellness, not so much, but sometimes you have to just take what you can get.

With 16 days of serious nasty cold symptoms and time off of work--by far the longest cold I can ever remember having, but I am pleased to be able to say the exhaustion is finally much better.  I actually feel like myself again.

Which is the part that makes me nearly giddy: I've been taking Ibrance every day for 17 days and I feel like myself again.

The words don't really convey the magnitude properly.  The thing is, the way the timing worked out, the day after I took my first Ibrance pill I started feeling ill. And the more days I took Ibrance, the worse I felt.  So I was legitimately wondering there how much might be outside stuff and how much was just the way it was going to be on Ibrance.  I was thinking the future seemed most likely to be a collection of days of feeling meh at best, wondering if I really appreciated the better life before this treatment quite enough.

But now I feel much more normal, so that's really exciting.

Since I'm just past the halfway point in the 21 day on/7 day off Ibrance cycle (at least assuming my blood counts are decent enough to start the next cycle after those 7 days off), I just went in yesterday to have my blood drawn and see exactly how those blood cells are reacting to having their CDK 4/6 inhibited.  The counts are expected to be down, but the question is how much and whether we're getting into dangerous territory or not.

I've gotten back numbers for the metabolic profile (sodium, glucose, etc.) and those have taken a dive from where they were holding before Ibrance, but so far I seem to be in the low end of normal--in some cases just barely, but it still counts.  

I need to wait on lab results for those blood count numbers (white cells, platelets, etc), though.  I do have some issues/side effects, some of which do seem to be related to Ibrance messing with the blood cells.  Among other things, I suspect white blood cells (low to begin with) may be having problems with Ibrance, that 15 day head cold being exhibit A.  I also am wondering about low platelets, judging from my new found mostly chronic low level nosebleed (cute, right? are you jealous?).  But at least I'm feeling pretty good again, so it's hard for me to believe the counts could be that dangerously low if I feel this normal.

And, anecdotally at least, it seems like a lot of the Ibrance blood problems start to taper off after a few cycles on the drug, so things have the potential to get even more normal as time goes on.

The biggest question (Is my cancer continuing to grow?) is still going to be an open one for a few months while we let Ibrance and Letrozole (hopefully!) do their stuff.  But unlike last week, suddenly now the idea of continuing to generally live my life while taking Ibrance is beginning to feel really do-able again.  Which is good, because I'm hoping Ibrance with Letrozole will work for me, and continue working, and continue to be worth taking for a very long time.

Maybe about Ibrance, maybe not

Edgar Degas - L'Absinthe

Two weeks ago, I was on a dream vacation to Italy.  One week ago I came home and started my 2nd new drug, Ibrance, meant to work alongside the letrozole I started the day the new bone and liver mets were discovered.  I've been feeling sick ever since.

I can't really blame it in the Ibrance, at least not fully.  I was, after all, on airplanes, in new places, finishing a busy week with not much sleep.  My meals in Italy were delicious but not full of whole grains, fruits, and vegetables the way I try to make sure my normal meals are.  So, like millions of travelers, I caught a bad cold.

Strangely, with all the medical stuff I've had over the past several years, stuff including chronically low white blood cells, I don't get sick much. That's part of why this one has me shooting dirty looks in Ibrance's direction.

I also can't remember in recent times having a cold that lingered this long.  First a couple of days of sore throat and body aches, then add in a bad, tickley, barking cough, toss in a stuffy/runny nose for good measure, and make sure there's enough exhaustion so that the nights spent sleeping poorly with constant coughing and sniffling really hurt.  And keep up with it through what is now day 8.  Yuck.

To be fair to Ibrance, none of those are recognized side effects of Ibrance.  Plus, as of last Wednesday at least (at the time sore throat and body aches), my oncologist wasn't worried.  She pointed out that 3 days on Ibrance (at the time) wasn't really that long to be building up side effects.  So that's all good.

But, since you know me by now, you know I still worry.

I worry about the common side effects of Ibrance like lowered white blood cells and chronic upper respiratory infections.  Low platelets an poor blood clotting.  Anemia and fatigue. I worry that all of that sounds like an invitation to catch everything that may be going around.

I worry that those things, even if they're just starting to develop in me aren't helping me get over this cold.

I worry that this isn't just a bad cold based on bad luck but actually a sign of how my live is going to be on Ibrance.  Catching everything.  Taking too long to get better.

My oncologist is smart and careful, and in my head I know she's probably right, that this is just a cold and that's that.

And hey, last night, I only woke up once in the night, which is much better than the several nights before.  And yesterday, finally, for the first time in a while, I felt better than the day before instead of worse--both facts that help bolster my faith  in a non-Ibrance illness.  Or at least an illness that can run its course despite Ibrance.

But, with a cold that's unpleasant and lingering, it has me thinking back to my chemo in 2012.  That time was tough but bearable, mainly because I knew that in 16 weeks from the first dose I would be done.  That's the thing missing with stage 4 treatments, there isn't a checkered finish flag.  You start with one (hopefully the one with least potential side effects and most likelihood of good results) and keep on until the cancer gets worse.  Then  you pick another and do the same thing.  Over and over again until you run out of treatments.

Its a great system if your side effects are minimal and your success is long lasting.  It's an ok system as long as they meds are giving you good results.  But if the side effects are difficult and the drug is still effective, at some point you may have to deal with the fact that this is now just how your life is. And if the drugs aren't effective, well, you know that's not good.

Clearly, a lingering bad cold (or a series of lingering bad colds) is livable if the anti-cancer results are good.  And I have hope that Ibrance will generally go better than this first week has been, despite low blood counts that may or may not be in play and may or may not be keeping me sick longer.  At least for now, I feel like maybe I'm starting to get over my cold and coughing a little less.  Hopefully that's a good sign that it won't be like this for the duration.

I've always said, and always meant, that I'd do whatever I had to to be here for my husband and the kids for as long as I can.  But this cold serves as a reminder that so far in stage 4 I haven't had a whole lot of things that would put that to the test. I'm hoping my Ibrance experience won't be much of a challenge, either.  But this week of illness is a reminder to me that there are a lot of different things living with stage 4 can mean.

But right now, there are just too many unknowns about what this cold might mean, how Ibrance might go, how long I'm going to be feeling under the weather, and even how effective Ibrance may be for me.

So, here's hope for feeling better soon, a long and successful run on Ibrance, and no more illness.  And the hope that I'm just a traveler who caught a bad cold unaided and unabetted by any other factors and just need to get over it soon.