Bone Biopsy and Results, Part One

For the fourth time in my cancer career, I reported to the 5th floor Ambulatory Surgery center of Roosevelt Hospital on the morning of my bone biopsy. This is the same place I had to go when I had my liver biopsy and my two surgeries, so I'm pretty familiar with the place by now.

Luckily, unlike those other times, my appointment was not at the crack of dawn, but rather a much more reasonable 10am.  Although, I learned that the price for getting to sleep in a bit meant that I was that much more hungry, since I was not allowed to eat anything after midnight.  Interestingly enough, when we checked in my Dad was remanded to the hallway to finish his coffee, as they don't allow any food or drink in the waiting room.  The reason for this is to not flaunt food and drink in front of the patients who can't have any!  I thought that was pretty thoughtful and considerate, though it did mean my Dad had to chug his coffee in the hall (I guess we didn't remember everything about Ambulatory Surgery!).

We didn't have to wait long before they called me to the back.  As usual, they asked me a bunch of questions (like why was I there, when was the last time I ate, etc.) and then gave me a hospital gown and locker to store my stuff during my procedure.  Then my Dad was allowed to come back.  Once again, we didn't have to wait too long before they were ready for me.

I was wheeled down to the 4th floor, where the procedure would take place, and a nurse came over to put in an IV.  She tried to put it in my hand, since I would be lying on my stomach for the procedure, which would theoretically make a port IV difficult, but the vein blew (hate when that happens).  So, she left to ask the doctor if a port IV would be OK and luckily he said yes (whew).

Once my IV was all set up, a fellow who works with the doctor came over to explain the procedure.  They would be using CT scans to guide a needle into a tumor in my spine to extract a small piece of it for analysis.  I would be given a sedative to relax me, but not put me out (though she said some people do fall asleep).  I would also be given a local anasthetic.  She also warned me that the needle itself makes a noise - kind of like a dental drill - since it would be going into bone, and not to be alarmed by the sound.

While we waited for me to be wheeled into the procedure room, my Dad and I chatted about - of all things - Easter candy.  You see, I gave up chocolate for Lent, and I really, really miss it.  And considering that it was around noon by this time, meaning I hadn't eaten in about 15 hours, I had candy on the brain.  So we discussed what my parents would be purchasing for Easter candy this year and concluded that it would include all of my favorites, especially peanut butter eggs, but also a chocolate bunny, Cadbury eggs, Peeps, and jellybeans.  (And yes, even though I'm almost 35 years old, my parents still do my Easter basket every year!)

After I got wheeled into the procedure room, Dr. Friedman came over to talk to me as well.  I told him that I remembered Dr. Sara saying that they might have to avoid the area of my spine that had radiation, since sometimes that can affect results.  Dr. Friedman said that shouldn't be a problem, but just to be safe, he called Dr. Sara to discuss it before starting the procedure.  And Dr. Sara agreed that the area they were planning to go in was the best place.  I liked that they listened to my concern, and took the extra step to double check with Dr. Sara before doing anything.

Anyway, I was then given Versed and Fentanyl which relaxed me.  I didn't fall asleep during the procedure, so I did hear the "drill".  But it didn't really bother me.  It didn't hurt at all, except for a burning sensation I felt a couple times as the needle was going in.  I mentioned it but they said this was normal too, so nothing to worry about.

I think the whole procedure took about 30 minutes or so, at which point the doctor said they got a good sample, and I was wheeled back out.  I was still very sleepy, but I started to perk up after the drugs started wearing off.

I was then wheeled back up to the 5th floor, where I could finally eat!  They actually had a hospital tray for me with a full meal, but it wasn't vegetarian and didn't really look very appetizing, so I just had some graham crackers and ginger ale.

I was discharged about an hour later, and then I could finally have a real meal.  We went to a nearby diner where I had blueberry pancakes which tasted SO GOOD!

Over the next couple days, I had a slight soreness in my lower back - like I pulled a muscle - but other than that I had no lasting effects from the procedure.  It was pretty easy, all in all.

The following Monday, my parents and I went to Dr. Sara's office to find out the results.  Now, I did not really feel apprehensive about getting these test results - after all, we already knew that it was cancer of course, and we already knew that it was increasing in the bone; it was just a matter of whether or not the cancer was hormone receptive, which would determine the type of treatment.

Dr. Sara told us that the test results showed that the cancer was actually NOT hormone receptive.  It is HER2 receptor positive, but not hormone receptor positive.  This means that determining treatment is more complicated.  If the cancer was hormone receptive, the answer would have been clear - add a hormone treatment to my current regimen.  But that solution will clearly not work, so what do we do now?

Dr. Sara said that there is no clear answer on how to treat this, so he is consulting with other oncologists to get additional opinions and ideas.  By the time I have my next chemo treatment (this coming Thursday), he will have a plan in place.

You see, there are three known characteristics of breast cancer receptors - HER2 and the two hormones estrogen and progesterone.  But, there are other types of receptors which have not been discovered yet.  And it's one of these receptors that is causing the cancer in my bone to respond differently from the cancer in my liver, which is why it's so difficult to determine treatment.

Dr. Sara said one possibility he is considering is putting me on TDM1, which is the latest "blockbuster" breast cancer drug.  It actually has just been approved by the FDA, and will be on the market within a week or so.  It is a HER2 drug, so it's possible the cancer in the bone might be more receptive to this new drug, since it's not responding to the Herceptin and Pertuzamab.  Dr. Sara is consulting with the team at Memorial Sloan Kettering, as they did the clinical trials for TDM1, so they know it well and can tell Dr. Sara if they think it is a viable option for me.  The team at Sloan actually already knows about my case, since Dr. Sara had tried to get me into one of their clinical trials for this drug awhile back.

Another option might be to just keep me on the same regimen that I am on, and repeat my PET scan in 2 months, versus the usual 4 months.  Dr. Sara said that sometimes, there can be a "delayed response" in certain areas, so it's possible that the cancer in the bone is just being slow and will eventually respond to the drugs I'm currently on.

The bottom line is, we just don't know yet.  And the not knowing has hit me a little harder than I expected it too. As I said, I was not really apprehensive about getting these results, but I came away from it a little upset.  It was difficult to hear that there is no clear answer to my treatment.  And while I have full confidence that Dr. Sara will come up with the best solution and there will certainly be a plan when I go for chemo this week, the not knowing is hard.

It's not that I'm worried that the treatment will be more demanding physically or anything like that.  It's just that the fact that we don't know what is causing this cancer to not respond to the current regimen means that there is a greater chance whatever treatment we do choose may not work.  Despite this fact, I think I will feel a little better when I know what the plan is, so I am looking forward to Thursday, and to knowing more.

Until then...

Whac-A-Mole

Well, this past week was a scan week... I had my latest PET scan on Tuesday, and got the results on Thursday. As has become the "norm," the results were mixed once again.

The good news is that the cancer in my liver is "markedly" improved. Wahoo! The areas in the lymph nodes in my neck are also improved, which Dr. Sara already knew from his clinical exams.

However, there are some cancerous areas in lymph nodes in my chest and abdomen, as well as a few places on my spine, which are increasing.

So what does this mean? Well, we know that the chemo regimen I am currently on (Herceptin, Pertuzamab, Taxotere) is working - at least where the liver is concerned. So, Dr. Sara does not want to completely change my treatment.

However, obviously, something needs to be done about those increasing areas. As you may remember, last time my treatment changed, Dr. Sara's theory was that the increasing cancer in the liver was likely HER-2 positive, meaning drugs that fight the HER-2 protein (like Herceptin and Pertuzamab) would be effective against it.  It seems that Dr. Sara's theory was correct, since the cancer in the liver is responding to this treatment.

Now, his theory is that perhaps the cancer that is not responding to this treatment might be hormone positive, since when I had my first biopsy back when I was diagnosed, my cancer was both HER-2 and estrogen positive.  It's possible that the cancer in my liver is more HER-2 positive and the cancer in the other areas is more hormone positive.

With breast cancer especially, the cells can act differently within the same body, even though it's all still breast cancer. He used the analogy that my Mom, Dad and I are all part of the same family, but we are still different. This "acting differently within the same body" thing is more often seen with breast cancer than with other types of cancer, and obviously makes treatment more complicated.

If Dr. Sara's theory is correct, then adding a hormone treatment to my current regimen should help fight the increasing spots. However, he doesn't want to just go by trial and error - he would rather know for sure what we are a dealing with rather than just throw something to the wall to see if it sticks.

To that end, I am going to have a bone biopsy this week. They will stick a needle in my spine to extract a tiny piece of the tumor which will be analyzed to see what it's made of, and if it is indeed hormone positive. Then, Dr. Sara will make a decision on treatment.

I'm scheduled to have the bone biopsy at the hospital on Tuesday. It will be similar to the liver biopsy I had three years ago, except this time the needle will go in my spine instead of my liver.  In fact, the same doctor who did my liver biopsy will also do this procedure. I will get a local anesthetic, and probably also some kind of sedative so it should not hurt (hopefully!).

I will get the results the following Monday, and that's when I'll find out what my treatment moving forward will be. I have been on a hormone treatment before - namely Tamoxifen, which is a daily pill that luckily did not cause any side effects for me. However, I imagine there are other types of hormone treatments as well and so we'll just have to wait until next Monday to know what it will be (if it is indeed a hormone treatment that is added).

This experience of test results that are "some areas up, some areas down" has become a pattern, and it is definitely frustrating. My Dad calls it Whac-a-Mole because it seems that as soon as we knock down one area, another pops up. While I am very thankful that my test results continue to not be "catastrophic," just once I'd like to have some all-around positive results.

Maybe this new treatment will do the trick and next time my wish will come true!

Tumor Markers

Just a quick post with some good news... On Friday, I had treatment #3 of the latest chemo regimen (Herceptin, Pertuzamab, Taxotere) and got some good news - my tumor markers are DOWN! And not just down a little, they are down a lot - from 700+ to around 200.

And these results came in after only one treatment - even Dr. Sara says this is "big," and if you've been following along you already know that Dr. Sara does not sugarcoat anything!

They even showed me the graph - it looks like a mountain.  You can see a sharp incline in early December before my first treatment of the new regimen, and then it's a pretty steep drop after treatment #1.

Obviously this is very good news, as it tells us that the chemo is doing it's job. In addition, during this week's clinical exam, Dr. Sara could barely feel the lymph nodes in my neck, and he also could not feel anything in my abdomen/liver (unlike last time).  Further proof this new regimen is looking pretty effective.

Of course, while all of this is very encouraging, it's also important not to jump to conclusions - this certainly doesn't mean that I am cured, or will be cured, and it doesn't mean that this new chemo is going to work forever.  All it means is that it's working right now, which is amazing and good enough for me right now!

It's even better because this chemo continues to give me no real problems on the side effect front. In fact, the pre-meds I have to take to ward off side effects are giving me more trouble than the chemo itself. I have to take Dexamethasone twice a day the day before, the day of, and the day after chemo.  It tends to make my mouth taste funny, and it's also been affecting my sleep.

I told Dr. Sara about this and he said that next time, I get a 50% off Spring sale - meaning I only have to take half of the dose I normally take.  As long as my feet don't swell (one of the side effects it wards off), I will be able to continue on the half dose and that should alleviate the mouth/sleep issues.

So all in all, it was a very good week at chemo!  Until next time...

Cancerversary

Happy New Year! This year I resolve to be a better blogger. I hate, hate, hate it when I end up making promises I can't keep, so I hereby resolve to blog at least once a month. There, now that it's out in the universe, I will make it happen!

For me, January brings more than cold, dreary weather; a re-dedication to healthy eating and fitness plans; and NFL playoffs (go Packers!). It also brings my "Cancerversary," i.e. the anniversary of the day I was first diagnosed. Some people refer to their "Cancerversary" as the day they completed treatment or were declared cancer-free, but since I don't and frankly aren't likely to have one of those days, at least not anytime soon, I'm sticking with the first definition.

On January 14th, it will be three years to the day that I found out I had breast cancer. I think back to that day and how my mind was reeling with the unknown. Even though in my calmer moments I knew that statistically, most people survived breast cancer just fine, I couldn't help thinking things like "I hope I'm still here next Christmas." Well, I did make it to that Christmas, and the one after that, and the one after that.

And while I still have advanced disease and am still a regular at the Oncology ward at Roosevelt Hospital, I am also still thriving. I still work full-time, travel, and live a full life, despite my diagnosis.

Back on January 14, 2010, I could not have imagined that would all be true despite my dire diagnosis. So for that, I am very, very thankful. I'm not really sure how I feel about the word "Cancerversary," because is the day you receive devastating news really something to put a celebratory notion to?  But if I think about where I am now, versus where I saw myself at this point three years ago, then yeah - that is something to celebrate!

When we last left off, I had started on the new chemo regimen of Avastin and Abraxane. All went fine with that, until my next scans came up in August. Mixed results once again - some cancerous areas in my body were increasing, while others were decreasing. And no, there was still no way to tell quantitatively if there was more or less cancer in my body.

So, Dr. Sara changed my treatment once again. This time, I was put on Adriamycin, Cytoxan and 5-FU. The minute I heard "Adriamycin" I thought "The Red Devil."  You see, I'd heard about this drug. It's been around for a long time so I've read about it in various cancer articles and books. It gets its nickname from its red color (it even turns your pee orange - party trick!), but also because of it's brutal side effects.

Luckily, Dr. Sara assured me that it's not really considered "The Red Devil" anymore because anti-nausea drugs have come such a long way that they can now effectively combat the side effects.

And, surprise, surprise, Dr. Sara was right. I did have some occassional chemo-related fatigue and appetite issues (after one treatment, I only wanted to drink iced tea; after another, it was birch beer), but all in all, it was not bad at all.

Dr. Sara could tell the treatment was doing its job because the lymph nodes in my neck would either stay the same or decrease when he examined them every three weeks I was there for treatment.

But alas, you can't REALLY know what's going on until you get scanned again. My next scan was scheduled for October 30th, but you may have heard about this little incident we had here called Hurricane Sandy.  As it turned out that crane that was dangling from a building in NYC during the storm that was all over the news was just a couple blocks from the radiology place! Not to mention the fact that I was stranded in my apartment in Hoboken for 2 days until the flood waters on my street receded and I could flee to Mom and Dad's, where I was a refugee for a week and a half.

I was determined not to miss treatment though, so even though it took us FOUR HOURS to get to the hospital on the Thursday after the storm (when it should only take about an hour and a half from my parents' house), we made it.

But of course, that scan did not happen as planned, so instead Dr. Sara said we would go one more cycle, and then get scanned after Thanksgiving.

Side note - they have changed the guidelines for the no carb, no sugar diet I need to follow the day before the scan... it's even more restrictive now. So I had to change the PET scan diet routine I had gotten used to - it's all about cheese-less veggie omelets and salad now. No fruit whatsoever, not even apples and blackberries which used to be OK; no cheese; and no yogurt which also used to be allowed. Ugh; at least it's only one day every four months or so!

This latest scan showed results much like the previous two - mixed.  The cancer in all areas of my body except the liver, including my lymph nodes, spine, abdomen, were all decreased or unchanged.  But, there are new lesions in the liver, so another change to treatment was in order.

Of course, the liver is the only vital organ the cancer is in, so it's disheartening that that is the one place the cancer was increasing.  But Dr. Sara reminded me that the liver is one of the most resilient organs in the body, and he assured me that he didn't expect me to start experiencing any effects from the cancer itself, which was good news.

With most cancers, chemo tends to treat all the cancer in the body equally, as it's a systemic treatment. But sometimes with breast cancer specifically, they see cases like mine where some areas can be up while others are down.

Now, I have not been on Herceptin, or any HER-2 drug in about a year, so Dr. Sara's theory is that perhaps the cancer in the liver contains more HER-2 receptors than the cancer in the other areas of my body, which would explain why my most recent traditional old-school chemo regimen wasn't being effective there.

So my new treatment cocktail includes a return to some old favorites. Welcome back Herceptin and Taxotere! They are now joined by newcomer to the party, Pertuzamab.  Pertuzamab is a HER-2 drug very similar to Herceptin, but studies show the two drugs taken together are more effective than either on their own. And Taxotere is more of a traditional chemo drug, which was part of my original chemo regimen back in 2010.  The thinking is that hopefully the Herceptin and Pertuzamab will attack the cancer in the liver, while the Taxotere will keep the other areas in my lymph nodes, etc., quiet.  It sounds like a war strategy, doesn't it?

I've now had two treatments of this new regimen and so far, so good. These drugs are much milder on the side effects scale than my most recent regimen, and that wasn't even that bad.

I did have the new experience though of having an initial reaction to the new drug.  The very minute the Pertuzamab started dripping into my bloodstream, I suddenly got chills. My fever had risen slightly, and my blood pressure was really low. This is a common reaction to any new drug, but it was new for me as I've been on LOTS of new drugs and had never had any problems before. I was given Demerol to combat the reaction, which made me really drowsy - I basically took a nap the rest of the day in the chemo chair.  Dr. Sara was not too concerned and said he did not expect it to happen again, and luckily it did not when I had my second treatment of this regimen last week.

One side effect of the Taxotere is hair loss though, so I will not be getting my hair back anytime soon. Sure enough, right on schedule about 18 days after my first treatment, I started noticing my hair falling out again.  Now, my last few treatments have all caused hair loss and I've noticed it kind of ebbs and flows... it will come out heavily for a while starting the requisite 18 or 19 days after treatment, then it will slow down, then it might start up again, etc.  The result being that right now I have what looks like a thinning buzz cut.  It's not attractive to say the least, though Dr. Sara was quite amazed that I have as much hair as I do even after the Red Devil, I mean Adriamycin.

I have pretty much been "wigging it" since we lopped off what remained of my hair last Memorial Day. And I have added a new style to my wig repertoire as well:

I'm BLONDE! (PS aren't Claire and Ben just the cutest?) This wig is courtesy of the American Cancer Society. The NYC office runs a program providing free wigs to cancer patients.  My friend Bernadette and I had fun trying on the different styles.  Here is one we passed on; I call it my "Vegas look":

And lastly, I'm FAMOUS!  Well, not really, but back in August I was interviewed for a CBS NY special that aired in September leading up to the Komen race. They did a segment highlighting all the great programs at Roosevelt, including music therapy.  Here is the link; you can see me just before the 2:00 part. You will also see Dr. Sara and some of my favorite nurses: http://newyork.cbslocal.com/video/7706895-2012-susan-g-komen-race-for-the-cure-special-part-3/

And here's a pic my Mom took of the "shoot":

Until next time (which will be February - I promise!)...

Catching Up

Yes, yes, I know it's been more than six months since my last post.  It's not that things haven't been happening on the cancer front - they have (but don't worry, nothing tragic) - it's more that 1) I've been busy living my life and 2) lately, in the limited free time that I have, I've found myself not wanting to really sit down and think about cancer.  But that being said, here is the Cliff Notes version of what's been happening over the last 6 months, and I really will try not to go so long without updating next time.

Now, where did we leave off? Oh yeah, my cancer markers spiked, the PET showed some new spots, and so my treatment was changed to Halaven.  The Halaven went well... once again, as seems to luckily be the pattern with me, I did not have any adverse side effects.  The worst that happened was that my nails became really brittle and split, and I had to keep them really short.  Miniscule in the grand scheme of things.

Better yet, the drug seemed to be working.  In January, Dr. Sara re-ran the CEA test and the numbers had dropped significantly.  I remember checking my phone after a meeting with a client on a Friday morning, and I had a message from Eugenie (Dr. Sara's nurse practitioner) with the favorable results.  Now that's about the best news I could've received that day.  I saved that message for awhile!

I got re-scanned again in March, and the results were mixed.  The cancer in my liver and in some of the lymph nodes by my liver had decreased; some of the other spots (like the spot on my spine) had not changed; but there were also two spots in my abdomen which had increased and a new spot in lymph nodes on the right side of my neck (in addition to the left which was discovered in December).


There is unfortunately no such thing as a test that measures all the cancer in your body to be able to tell collectively whether there are more or less cancer cells than last time, so it was hard to say if the results were better or worse, but we were encouraged by the fact that there were decreases in the more "important" areas (i.e. the liver).


So Dr. Sara decided to keep me on the Halaven, but repeat the scan soon - in May - to keep a bit of a closer eye on things.

And then in April during a clinical exam, he could feel that the lymph nodes in my neck were swollen - a sure sign that the cancer there was increasing.  So I was scheduled for another PET scan and even before I had it Dr. Sara had decided on my new course of treatment.

The PET showed that some of the existing spots - including the liver - were more "active" (though not necessarily increased) and of course the cancer in the lymph nodes by my neck had increased, which we already knew.

My new treatment - which I am still on - became the combined forces of Avastin and Abraxane.  Both drugs are 30-minute infusions, and I now go to chemo every week for three weeks, then have one week off.  On weeks 1 and 3, I get both drugs, while on week 2 I only get the Abraxane.

The first day of my new treatment was extra long since the Avastin had to be administered over 90 minutes, to ensure no adverse reactions.  I was in the infusion suite all day - it was like back to the early days of chemo.  But, of course, I did not have any adverse reactions so the next time I received Avastin it was a 60-minute infusion, and now it is down and holding at 30 minutes.

One major side effect of this new treatment is that I have lost my hair again - well, sort of.  It became very brittle and course a few weeks after treatment started - what I call "chemo hair" - and then it started falling out about a week or so before my birthday (May 29).  Even though my hair is so thick that even after week of significant hair loss you still could not tell by looking at me, it was super annoying.  I was constantly vacuuming my bathroom floor and after a week I was tired of pulling fist-sized clumps of hair out of the shower drain.

So over Memorial Day weekend, my brother-in-law Kevin once again put his shears to use and shaved my head.  What a relief!

Oddly enough, it seems like my hair is growing back - I kind of have a crew cut now - but it's still very thin in the spots just above my temples.  I look like I have male pattern baldness, so I pretty much keep it covered with my wigs or any variety of hats/scarves.  I have gone running a few times and gone swimming in the ocean with nothing on my head... it's so hot out, that I just don't care sometimes!  Luckily I haven't noticed any staring.

I've also noticed a little bit more fatigue than I'm used to.  It's manageable; I just find that I need more like 8.5-9 hours of sleep these days rather than the standard 8.  I'm trying to make an effort to go to bed a little earlier, especially during the week, but it's easier said than done.

On the bright side, my nails are no longer brittle and splitty; in fact they seem stronger than ever.  Funny how the different drugs affect things differently.

And the new treatment is working.  Almost immediately, we noticed a decrease in the lymph nodes.  As Dr. Sara said, he of course does not like the fact that I have cancer in my lymph nodes, but it does apprise him the opportunity to be able to tell right away - without a scan - if the treatment is working.

I've now completed two full cycles of the new treatment, and will start cycle 3 this week.  In the last few weeks there has not been a change in the lymph nodes, but this is not cause for alarm or reason to think the treatment is no longer working, since as long as it's not increasing it's good, and there could also be scar tissue there as well.

Pending no more unforeseen drama, my next PET scan will be after the next cycle, in August.  I am coming up on a year since the cancer was discovered to have returned, so here's hoping for a better August than last year!

As I said in the beginning of this post, one of my "excuses" for not posting in so long is that I've been busy living my life.  I am still working full-time and full-force; in fact, iVillage.com did a nice piece on me for doing just that, which you can check out here:  http://www.ivillage.com/real-women-i-kept-working-while-i-had-cancer/4-a-460382?p=2

I am still traveling, both for fun and for work - so far in 2012 I have been to Seattle, Las Vegas, San Diego, Dallas, upstate New York (twice), Washington, DC (a few times), Portland (Oregon), the Jersey shore (a lot), and also have upcoming trips planned next month to Bedford, PA; Denver and Las Vegas (again).

I've also tried to stay active.  I started off the year great with a 5-mile "Hangover" run in my hometown of Hamilton.  Here is my sister - pregnant at the time - and me at the finish line:

While my commitment to staying active has kind of waned in the last few months as I've been adjusting to this new treatment, the summer has re-inspired me to get back to the gym!

And most importantly, there is a new member of our family.  My nephew Benjamin John Kirner was born June 17th.  Now Claire has a little brother!

Here's a picture of the little guy:

And here is a picture of me with both of my little munchkins:

So you can see, it's been a busy year... until next time!

A Little Bit of (Unwelcome) Drama

Last time I blogged, the plan was to get re-scanned in November.  When we looked at the calendar we realized this meant my scans would be during the week of Thanksgiving, so Dr. Sara decided that rather than add some unnecessary drama to the holiday, we'd wait another 3 weeks and do them in mid-December.  This would give the drugs a little more time to work anyway, since between all the co-pay and pre-authorization stuff it took a little bit of time from when the drug was first prescribed for me to actually get it and start taking it anyway.

So, throughout October and November, it was business as usual.  I took my Tykerb and Tamoxifen dutifully every day, and went every three weeks for Herceptin.  I continued to feel no side effects from any of the drugs, and stayed active and healthy (even running a 5K in freezing, windy and rainy weather!).  I even had a music therapy session during one of my treatments (the playlist, handpicked by me, included Coldplay, Kings of Leon and Florence and the Machine).  I even sang along and played accompanying instruments, including a xylophone and the "ocean drum" - and didn't frighten everyone out of the Infusion Suite!

My most recent treatment was the Tuesday before Thanksgiving, and on that day I set up my next PET/CT scan, which was scheduled for December 13th, with the "results show" taking place during my next Herceptin treatment on December 15th.

And then this past Monday I got an unexpected call from Dr. Sara.  Much as I love Dr. Sara, it's usually not a good sign when he calls me out of the blue.  He was concerned about the results of the blood test I had the week before.  One of the cancer markers they test for called CEA, which for me was always in the normal range, had suddenly spiked.  He told me that this is most likely an indication that the cancer is spreading and that he wanted me to get scanned right away so we could see what we're dealing with as he was almost certainly going to have to change my treatment.

My reaction: "well, this sucks".  Dr. Sara agreed with me.  I then asked him if this test was pretty foolproof or if it was known for false positives; I was trying to look for any kind of bright side to this news.  Dr. Sara said that yes, of course false positives are possible, but that he does not think that is what is happening here - he told me that he expected my scans to be worse than they were in August.  Dr. Sara has said from day one that he would always be 100% honest with me and would never sugarcoat things, and he has stayed true to his word; something I really appreciate even though this was a crappy and extremely emotional draining call to get.

So, my PET/CT was quickly scheduled for Wednesday.  On Tuesday I followed the required special diet (yogurt! salad! eggs!), and the scan was pretty routine.  For my contrast "milkshake" I chose apple this time; seemed like an appropriate seasonal choice.

It is amazing what the physical reaction to stressful news like this can be; a lot of people would be losing sleep but for me it's the opposite.  Almost as soon as Dr. Sara called me on Monday, I felt a crushing exhaustion.  I even went to bed at 9pm one night and slept for 10 hours - that is not like me at all (I'm more of a night owl), but I guess this kind of stress takes a lot out of you.

And then on Thursday, my parents and I went to find out the results of my scan.  Dr. Sara cut right to the chase.  If you remember, in August when my scans showed that the cancer was back, it was in three main places: my liver, lymph nodes near the liver, and a small spot on my spine.  This week's scan showed that the  cancer in the liver was actually slightly decreased, the spot on the spine was unchanged, and the cancer in the lymph nodes near the liver was slightly increased.  In addition, there are new spots lighting up in lymph nodes on the left side of my neck.

So, this was obviously not great news, because you never want to see new spots, but Dr. Sara said that it was not nearly as bad as what he thought we might see.  He thought there was a good chance we'd find that it was rampant through the liver, or that it had spread to my lungs or some other vital organ.  Luckily, this was not the case.

Compared to what we thought we might hear that day, we were all pretty relieved to learn that the news was not as dire as it could have been.  It's funny how your reaction to things all depends on what your expectations are.  If my blood test had not spiked and these were my routine scan results, we probably would have been a lot more disappointed because we would have gone in hoping for no new or increased spots.  But, when you are pretty much expecting it to be bad, and it turns out not to be quite as bad as you were thinking, it really improves your reaction to things.

So, what does this mean for my treatment?  Well, my treatment will completely change.  I am being taken off all of the drugs I am now on - Herceptin, Tykerb and Tamoxifen - and I will start getting a relatively new chemo drug called Halaven.  This is a 5-minute infusion which I will get at the hospital.  The cycle is "two weeks on, one week off" - just like the Navelbine was.  I start tomorrow, Monday, Dec. 5, and I will go again next Monday the 12th, then have a week "off" then the cycle will start again on Dec. 27th.

Dr. Sara said this drug is very well tolerated, meaning there are not any common crazy side effects.  Some people feel a little fatigue, and some people experience neuropathy (tingling in hands and feet) but since I've been on chemo drugs where these side effects were much more common and I didn't have them, he expects that I won't really have a problem with this drug. Of course you never know how you're going to react to a new drug, but I've had a LOT of chemo drugs and luckily tolerated them all really well, so I'm pretty confident that will be the case with this one too.

We are going to try this drug for three months, and then - assuming I still feel good and no more blood tests spike between now and then - I will get scanned again in the beginning of March.  Until then, I will keep living my life as normally as possible!

In other news, last time I mentioned that I had received some financial assistance from the Patient Advocate Foundation and the Pink Daisy Project to help me with the exhorbitant Tykerb co-pays I had.  Well, I have two more charities to add to that list!  Team Continuum was very generous to me, providing $600 to my condo management company to pay off my condo fees for the next few months!  And, CancerCare provided me with more than $300 to help offset my financial burden as well!  I can't even express how appreciative I am to these organizations for helping me through this difficult time.  And I especially have to thank two people who put a lot of time and energy into researching programs I would qualify for and helping me to apply for them: my Mom, and Lori, the social worker at Roosevelt.  All in all, with their help I ended up receiving assistance to help pay for more than half of the $5400 I had to pay in three months of Tykerb co-pays.

And luckily, the crazy co-pays did indeed end after three months, and not because Dr. Sara took me off the drug.  In early November, I was able to change my health insurance plan, and under the new plan, my Tykerb co-pay became $30 vs. $1800.  What a relief that was!

And finally, I have say thank you to all of you who donated to the Making Strides for Breast Cancer Walk that my family and I did on October 15th in Bedford Springs, PA.  I really appreciate your generosity and know that your donations are going to a good cause to help other cancer patients like myself!

We had a great time - here are a few pictures from the weekend:

Here is all of us in our "Omni Army" team shirts before the walk.

My Mom and me in our "Survivor" gear:

The "Human Pink Ribbon" of survivors (my mom and I are near the top left):

Me and Claire:

Thanks again for all your support and in case I don't blog again this month, HAPPY HOLIDAYS to all!

It's Back

Unfortunately, the title of this post is not referring to the fact that I'm finally writing after a 3-month absence.

On August 11th, I found out the results of my latest PET scan, and they showed that the cancer is back in my liver, lymph nodes (did you know there are lymph nodes near the liver?  Just another fun fact you learn when you have cancer), and a tiny spot on my spine.

Needless to say, this has been a devastating blow to me and my family.  Even Dr. Sara was surprised by the results and said he is as upset about them as he would be if it were his own daughter.  But unfortunately, this is cancer we're talking about and as I've said before cancer is ruthless, unpredictable, and doesn't play by the rules.

Somewhere in the back of my mind I've always expected that I would likely have to deal with a recurrence at some point in the future, but I didn't think it would be so soon.  I was JUST getting to that thing they call "survivorship".  I finished radiation on June 24th and, except for my ongoing Herceptin treatments every three weeks, I was finally moving on after a year and a half of principal treatment.  And then cancer goes and knocks me back down again (but fear not; I don't plan on staying down for long!).

After Dr. Sara delivered the bad news, and showed me the new areas on my scans (because, by the way, they are all new areas; this is not a matter of the previous liver and spine spots flaring up again), he told me what the new plan was.

He prescribed an oral drug called Tykerb, which many studies have shown has a compound effect when given in conjunction with Herceptin.  I now take 6 pills a day - 5 Tykerb and 1 Tamoxifen - and of course my three-week intervals of Herceptin continue.

I will be scanned again in November, and that is when we'll know if the new regimen is working.  I asked Dr. Sara if it is possible that my November scans will be clear. He hemmed and hawed a little then said yes, it is possible; but he would be happy if my scans were either the same or (of course) showed less cancer than my August scans.  But I'm an overacheiver so I'm going for clear!

I've been on the Tykerb for almost 2 months now, and so far I have experienced no side effects (from the drug or the cancer).  Dr. Sara said the drug is pretty well tolerated over all, so that is good.  I've also had no side effects from the Tamoxifen, which I've been on a little longer.  The most common side effect of Tamoxifen is hot flashes, but I luckily haven't had any.  (Of course, I was originally taking Tamoxifen as a preventative measure, but now I'm taking it as a proactive treatment.  Dr. Sara said that it takes a few months to be able to tell if it's working, so here's hoping that it's doing its part.)

In fact, I feel healthier than I have in a long time.  I've been eating healthier and even started working out again.  I've had a lot of false starts over the last year and a half with the working out thing, but this time it seems to have stuck (so far).  I finally mustered the motivation to go back to my kickboxing classes, which is something I loved to do before cancer, and now I go 2-3 times a week, in addition to running at least once a week.  In fact, I even signed up for a 5K race in a couple weeks!

All in all, I've been living my life as normally as I can.

Dr. Sara says that the fact that my body tolerates my disease and treatment so well is a big advantage in my favor.  He said that he has had patients who have about the same amount of cancer as me, but they have lost 25 pounds (without trying) and are very weak.  With me, you would never know, because my body tolerates it so well.

So what if the Tykerb/Tamoxifen/Herceptin combo doesn't work?  Well, Dr. Sara said that there are still A LOT of things in the arsenal to try.  Luckily, with breast cancer, unlike a lot of other kinds including lung cancer, there are LOTS of drugs to try, and there is so much research being done that there are always new things coming out.  So if my scans in November aren't what we're hoping for, it just means that we'll try something else.

Now, there's another side to this whole thing which was completely unexpected and unwelcome.  It turns out that Tykerb is what is known as a "specialty drug" - I'm still not sure what this exactly means but I think it has to do with the fact that it's a relatively new drug and only available from one drug company.

More importantly, it means that it's a very expensive drug.  Now, I'm lucky enough to have health insurance but even with insurance, my co-pay is $1800/month.  That's not a deductible or anything - that is what I have to pay EVERY MONTH.  It's more than my mortgage.  And it's not like Dr. Sara can prescribe something else that's similar but cheaper - Tykerb is the one and only drug of its kind (no wonder it's so expensive).

I found this out a few days after I found out the cancer was back.  Talk about being kicked when you're down.  Luckily, there are co-pay relief programs out there to help out people like me who are suddenly faced with astronomical bills.  My mom has made it her mission to try - and keep trying - each and every one she can find.

Of course, I don't qualify for many of these programs because several are income-based. However, there are some that are not, like the Patient Advocate Foundation, which gave me enough funds to cover one co-pay!  I was thrilled.  My mom and I have also been working with the social worker at Roosevelt Hospital, who has been very persistent as well and has been helping me apply for various other programs.  Through her help, I received $450 worth of gift cards for groceries (yay Trader Joe's!) and restaurants from the Pink Daisy Project to help offset the cost of my medical bills.  I am so thankful to these programs for their assistance, and I hope that someday I'll be in the financial position to be able to thank them with a donation of my own.

In other news, this coming weekend, on October 15th, my family and I will be walking in the Making Strides for Breast Cancer Walk in Bedford, PA, as part of the Omni Army team (the Omni Bedford Springs Resort there is a client of mine and we're going for a nice fall weekend getaway).  If you would like to donate to our team, you may do so here!

Also, I am quoted in the October issue of Prevention magazine!  Cool, huh?  You can see the story here (I'm at the very end).

Thanks again to all my blog readers for your continued support!