Moving on

Edward Hopper - Compartment C Car

I got some results from the bone scan I had last week and the CT and MRI earlier this week.  My brain still looks good, but my liver and bones are starting to show signs that the cancer is evolving its way around the Faslodex.  There are some new spots on my spine and some smallish areas on my previously unaffected liver.  It's not terrible, but it's not that great, either.

I also have more kidney stones.  Because today is my day, it seems.

So, at the recommendation of my oncologist, I'm moving on to a new drug combo and last month's Faslodex was my last Faslodex.

It was expected that this day would come, and I think I still did better than average, but I was hoping I'd get a longer run of it.

But, starting tonight, I'm on to Letrozole, an aromatase inhibitor.  I'll be combining that with Ibrance, the  new drug from Pfizer that was just approved by the FDA 2 months ago.  Timing is everything.

The Ibrance will take a few weeks to get (it has to come through the mail from a speciality pharmacy) and my oncologist wants me to wait until after I get back from the first away vacation I've taken in years later this month--it should be fine, but it seems a little ironic that I had 12 mostly uneventful months on Faslodex and the one week in 3 years that I plan to get on a plane for fun, and this happens.  As I said, timing is everything.

Letrozole's side effects should be similar to Faslodex.  Ibrance brings fatigue and low blood cell counts (red and white), so that may be a little more of a challenge.  Or maybe not.

The good news is, in the clinical trials, the Ibrance/Letrozole combo had a median progression free survival of 20 months, which compares to 10 months with Letrozole alone.  Those were women who had not already failed a different hormone drug like I did on Faslodex, so it may not be as good for me, but obviously median PFS is a guideline not a promise, anyway.

I guess I'm getting better at cancer these days.  I'm sad, but for now I'm feeling like it's ok.  It's time to roll up my sleeves again and move on to this next treatment.  And fortunately I'm not out of treatments yet.

And so I move on.  And hope this next new thing will be the next new thing.  And so it goes.

All sorts of updates

Wilhelm Conrad Roentgen, who discovered X-Rays,
won the first Nobel prize in physics, and started the
chain of events that made my hip feel much, much better.

Yesterday I found out the clinical trial I was expecting to be in isn't going to happen after all.  The sponsoring organization is having some delays in opening it up, so it won't be enrolling until, most likely, May.  I'm not willing to wait and my oncologist isn't recommending it.  So, yesterday we moved on.

I guess the clinical trial just wasn't meant to be. I keep telling myself that if it was the right thing for me, it's what would have happened.  Goodness knows there have been enough things I found discouraging in life that later turned out to be for the best, so I guess there's no reason why this couldn't be one of them.

So instead of a consenting to the clinical trial, I got my second dose of Xgeva (as scheduled) and my first dose of Faslodex (Fulvestrant).  I need to come back in 2 weeks for my second dose, but after that it's one dose every month at the same time as the Xgeva.

In effect, it's the same as being on one of the arms of the clinical trial, the one with the drug (which would have been Faslodex anyway) and the two placebos, except that it's all the "benefits" of the placebos without needing to take placebos.  

Put that way, it sounds almost awesome, doesn't it?

Hopefully the Faslodex without the other drugs will work well, and work well for a long, long time.  It is one standard treatment for this and it can work well, even where Tamoxifen was a dismal failure (and honestly, my quick trip to mets on tamoxifen really does have to be considered a dismal failure).  I'm hoping Faslodex works beautifully for me.

Unfortunately, the Faslodex is an "intramuscular" injection, given in two shots deep into 2 big muscles.  It hurt at the time and hurt most of the evening.  I'm still sore today, but if it does the trick I'd gladly put up with that and then some.  

Fortunately the Xgeva is "subcutanious" injection, so that one goes under the skin in my upper arm.  I won't lie, it does sting, but when it's over at least it's over.

Both the Xgeva and the Faslodex have similar side effects, mostly headaches, muscle aches, and some GI stuff, but so far for me it hasn't been that bad.

Fortunately, in contrast to the moderate unpleasantness of the Faslodex and Xgeva, my radiation therapy is darn near miraculous.  

Before I started the radiation my hip was already feeling a bit better than I had been at my worst.  I don't know if that was due to being very careful to avoid using the joint more than was necessary or something unexpected with the Xgeva, but I'm glad of it.

Still, I think the radiation was a good decision.  I just can't get over how much better my hip feels each day.  From what I hear from my Radiation Oncologist, Radiation Nurse, Radiation Therapists (yes, lots of radiation people on my team), how long it takes to feel better varies considerably from person to person.  After my tamoxifen failure at the same time as the failure on my previous clinical trial, the failure to get in to this next clinical trial, the unpleasantness of all the injections, and what was generally a hard day, I'm pretty glad to have something going pretty nicely right now!

Every single day I'm noticing something better after radiation than I had the day before, which is incredibly cool.  On day 2, I was able to bend my leg to put on socks in a way that had been excruciating the day before.  On day 3, I noticed I could get into the car without having to brace myself with the good leg and fall into the seat.  Day 4, I could get out of the car like a normal person without having to twist around and flip my right leg out first and I'm a lot less aware of where my bones are and if I'm putting pressure on them.  This morning, I woke up and noticed for the first time in a long time that my hip hadn't hurt every time I rolled over to the side that bent the joint.  

And the best part is, so far I haven't had any of the side effects I was told could happen, and none I wasn't told about either.  Just plain none!

Well done, Wilhelm Röntgen and company, well done.

Tamoxifen is no longer my new best friend, but I think radiation therapy will fill that vacant spot quite nicely.

Yesterday was a long and moderately depressing day, but today is better and that's really what the goal is here.  A few tough days (if necessary) in exchange for more days in general and, with any luck, a lovely long string better days to come.

This could be the making of me

William Blake - Ancient of Days

One of the things about cancer is that there really are no (or at least very few) absolutes in treatment.  They have things that "usually" work or "often" help, but there's no real guarantee that it will work for me.

This is one of the hardest things for me to deal with.  I don't like to take chances and I'm very, very fond of sure things.

People who work with cancer do, of course, absolutely know what works a lot of the time.  They know if something has been proven to work better than other things, plus they understand the reasons certain things should be effective (for instance, my cancer, both in the original tumor and now in the bone, has been tested and found to have estrogen receptors, so depriving it of estrogen is considered a good approach because it both fits the science and has worked in controlled trials for others with similar cancer characteristics).

But, with cancer (like, unfortunately, with so many things) there is still a chance it won't work. Kind of like how I had the "most likely to cure this" treatments last time and yet....

Basically, there are still a lot of unknowns.

In the next week, I'll have been off the tamoxifen (no longer my best friend) long enough to "officially" have it out of my system and be ready to start the next treatment plan (the Xgeva I started a few weeks ago is intended to help prevent further bone damage from the cancer, but it's not supposed to kill the beast).  The plan is to move on to a different kind of anti-hormonal drug (probably an estrogen downregulator, possibly with or instead an aromatase inhibitor, both of which are different than an estrogen blocker like tamoxifen was, for those keeping track or playing cancer treatment bingo).  If that works, then great!  And hopefully it will work and work for a long time.  But, if not, I will probably be on to chemo fairly soon (then, hopefully that will work and work for a long time).

But, of course, we won't know what will happen to the cancer until it actually happens.

For now, with this next treatment plan, the question is which particular estrogen treatment (there are seveal out there for post-menopausal/post-chemopausal women to choose from) and what else goes with it.  And, for now, the non-answer answer is, "it depends."

As I mentioned in an earlier post, my oncologist is recommending a clinical trial for me.  I'm hoping it pans out.  There are a lot of pieces that have to fall into place for it.  Things that do look likely to fall into place, but it's not a sure thing.

The trial is just opening up--in a way that feels very cool because if I was diagnosed even a month before I was, I would have already been on an aromatase inhibitor or estrogen downregulator and not eligible for the trial, so that feels like a good sign--but, because it's just opening up, my hospital's institutional review board still needs to approve it for their patients.  They were meeting at the end of last week, so hopefully that's done with, but if they were to put off making a decision, we wouldn't put off treatment (because cancer) so that would mean I'm out of the trial.

If it is now approved by the IRB, there are still some tests I need to "pass" to meet the requirements.  I should pass them, no problem, but there's a chance that I won't.  Wouldn't be the worst thing ever, of course, because I'd still go on one of the standard treatments, but it would be disappointing.

And if it's approved and I'm approved, there's still a chance the institution coordinating the trial will have delays in opening it on their end.  Which would also mean I'd be out of it.

But, even if all of that works like a clockwork (and I hope it does), there's still the fact that it's a double-blind clinical trial.  This particular one is, I believe (and my oncologist believes), a pretty good bet for someone like me who's not in dire straights and who's not already run through multiple treatments: it's testing 3 different currently on the market drugs to see if they work better together, so it's not testing a new product yet to be used in the larger world and, therefore, not testing things without long track records.  Also, it's a phase III trial, which means it's passed tests for dosing and safety already.  And, most importantly, no matter which "arm" of the trial I end up in (between drug plus 2 placebos, 2 drugs plus placebo, or 3 real drugs), I'll still be receiving the drug that is an accepted standard of care for someone in my situation in any of the 3 arms.  So that part, of course, is not at risk.

But it's kind of a gamble, even if I'm in the trial, as to which arm I'm in and which arm I should want be in.

I'm relying on faith (ok, faith combined with the knowledge that I'll still be getting good treatment no matter what else goes with it) that whatever I'm on will be "right".  I'm hoping for the best, and hoping it brings me to NED (no evidence of disease) and keeps me there for a very long time.

I try to remember that God has a plan for me even when I don't know what it is.  But, unfortunately, God doesn't promise eternal life on earth and doesn't promise there will be no trials in this life, either (trial/trial? I guess it works either way, right?), so there is that.

In the end, this trial could be one of many things that I'm not doing in life, it could be just another treatment that does or doesn't work for me against my cancer.  Or, you never know, it could just be the thing that saves me.

Here's hoping for that last one.  Whichever meaning of "trial" and "save" you want to apply to that, let's just put our hope in that one.

Standing on the Shoulders of Giants: me (plus clinical trials)

I laugh with my kids about how the internet revolutionized our lives.  When I was younger, we used to argue about facts on and off for years.   My kids argue briefly and let Google figure it out.  Doesn't really cut down on the arguing, but at least they put an issue to rest and move on to another fairly quickly these days.

I don't remember much from 8th grade science class.  To be honest, I don't even remember what branch of science it was focused on and, while I can see his face, I don't remember my teacher's name.  What I do remember is a single quote our teacher attributed to a modern scientist accepting some big science prize--possibly a Nobel, but I don't remember for sure.  While accepting the prize, the scientist said, "I am merely standing on the shoulders of giants."

I've tried to find out who it was, but Google gives me lots about ancient legends and Sir Isaac Newton and nothing (or nothing I have the patience to wade through right now) about modern scientific prize winners.  Perhaps I'm remembering wrong, perhaps it never really happened (that was another hazard of the time before internet, urban legends had much longer legs), but I still love that quote.  

So much the we have is built on the work of those who came before us.  Cancer fighting techniques and my odds of staying alive are no exception.

There's a blogger who writes about science and medicine who's written the clearest explanation I've seen about the process of developing the knowledge that is our current treatment for breast cancer here.  The knowledge gained is impressive, but as impressive, to me at least, is the number of women over decades of time who were willing to be part of these trials and help provide better treatment for those of us who would follow.  I am profoundly grateful to them.  

It isn't an understatement to say I likely owe them my life.  For my cancer, they estimate the chemo regime I had offers me a 32% increase in survival odds (32 out of 100 more women will be alive because they had the chemo regime). 

Good trials require a lot of things, but one of the biggest requirements is a large enough number of participants to see what's due to the treatment difference.

I think about it this way: I'm having pain in my hip.  It could be I injured it exercising.  It could be the tamoxifen.  It could be a genetic predisposition to hip weakness.  It could be wear and tear from my years as a cross country and distance track runner.  It could also be bad shoes.

So, at my doctor's suggestion, I've been resting it and taking Advil.  It's a bit better now.  I'm assuming it's the rest and Advil that are helping, but I have no way of knowing if it could really be better because I haven't been wearing athletic shoes or because the leaf mold has put me back on my allergy pills and they help or because I'm eating food with more or less of a certain vitamin or mineral over the last 2 weeks, or something else entirely that I'm not even thinking of.

I'm one person with all kinds of things I do every day, so who the heck knows which it was?

But, if someone who knows a lot more than I do about joints and allergy pills sees a way allergy pills might, say lubricate joints...  Or if someone looks at records for people who take these pills and notices there seems to be a trend of less hip pain...  That's a great time to set up a trial and see.

With enough people involved, the different little things we each do (wear sneakers, eat a lot of berries, stretch after exercise or don't) have a much smaller impact on the whole and by looking at lots of people with hip pain and giving them either the allergy pill or a sugar pill, we can get a much clearer picture of whether the allergy pill makes any difference or not.

As a cancer patient, I probably hear more than my share of stories about people who did x, y, or z and are now cancer free (in my life, these come from a place of love and a desire to help me, so I'm thankful for that).  As a cancer patient, I also have been through times where I have been very sad and very frightened and want to do something to make it better, so there have been times when I've been pretty "ripe for the picking" about ideas that might help me.

But the thing is, while you may have heard of someone who had cancer and drank 10 cups of organic juice every day and are cancer free to this day, that's not really proof that the juice helped.

Maybe it did, but maybe all the cancer was removed by surgery or the first doses of chemo the person did prior to giving it up and juicing.  Maybe it was something else the person did but isn't thinking to mention, like hit menopause, lost weight, or stopped using goodness knows what.  Maybe that person is one of the lucky few who were on the right side of the odds--even a cancer that will kill 95% within 5 years still has 5% who don't die, and someone has to be in that 5%, right?

Goodness knows cancer sucks and I, as much as anyone, want to believe in things that will help.  But so-and-so who did something and is better doesn't tell me anything, really.

Maybe it doesn't hurt to add whatever so and so did into the mix if it's harmless, but if its something with the potential to do harm, either by itself or because of what you give up to do it, well, I don't want my life to be hanging in the balance.

So that's where the clinical trials come in.   When enough men and women sign up and people track carefully, then we know.  And, for me, that's how we know my dose dense ACT chemo regime works better than AC alone which works better than the earlier chemo regimes which works better than no chemo.

Maybe I'd be one of the lucky few who would have lived anyway, but the stakes are high and the odds aren't good.

And so I truly believe I stand here today by the grace of God, medical people, and thousands of men and women who cared and paid it forward.

(and yes, I am in a trial myself--to my kids and their generation: hope it helps!)