Highs & Lows

Success!

The move is complete. My mom and our animals have safely relocated to eastern Maryland. If I pick up the phone and say I need her, she can be by my side in one hour and fifteen minutes flat. That gives me the piece of mind I’ve been missing since I was diagnosed more than two years ago.

The weather completely botched the move schedule and condensed an 8 day plan into 3. It wreaked havoc with our tasks and nerves; unfortunately this means a future WV trip will be needed to complete some little projects. But still – the move complete, and it’s coming off The Froglist!

We Now Return You to Your Original Programming

I still have cancer. No, that’s not news; but I’ve been distracted by planning and executing a very complex move. That said, I owe my friends, readers, and this chronicle itself many updates (or lowlights, as they may be.)

The Scans

After three months of Camptosar, I had scans in early January to see if it was working. The PET scan was unofficially stable: there is nothing significant enough that we have to deal with it. I think it’s a nice way to say “yeah, cancer may be growing/spreading in your lungs, but there’s nothing we need to tend to right now.” And it’s absolutely not measurable. (More on that later.)

In contrast, my brain MRI was a virtual shit-show. (My technical terminology, of course.) I have new spots. All are small, less than 1 cm, but the people who read the scans and write the reports didn’t even bother to count them. Dr. Roush told me about one or two old, zapped ones which may have shrunk; he seemed like he was desperately reaching for something positive to say.

Nothing is CyberKnife-able (boo) or surgical (yay), and for the first time I understood that anything we do from here on out is a chemical solution: pill or infusion, trial or FDA approved. Those are the tools that remain.

Trial Tribulations

Armed with crummy news, Seth and I prepared for the drive to Massachusetts General Hospital in Boston. We thought we would meet once again with Dr. Alice Shaw and enroll in the next available drug trial for ALK+ lung cancer. It’s good we called ahead…

There is a drug in trial that is showing promise for ALK+ lung cancer that has metastasized to the brain. Unfortunately, I do not meet the requirements for the trial. Specifically, the patient must show measurable tumor growth in the lungs. Not only are my lungs generally stable, I’ve never had the kind of lung tumors that could be measured in centimeters, for example. The drug company could change the rules and remove or relax this requirement in the future. But for now, there is no trial available to me.

For Now

At the end of January I began a chemo drug called Temodar. It’s used to treat primary brain tumors, which I don’t have, but both Dr. Roush and Dr. Shaw thought it was a logical next step. The key is that it is known to cross the blood-brain-barrier. Common side effects are messed-up blood counts and fatigue. So far my counts are acceptable, but I have experienced some other popular side effects like headache, nausea, and fatigue.

I have a growing list of other issues and concerns which are common with brain lesions and swelling, but I’m not ready to discuss those in detail. My oncologist and neurologist are adjusting the doses on a couple medications to try to mitigate some of my overall unhappiness.

It’s been difficult to stay in touch with my closest friends… to even know what to say. Many days I feel like I’m falling apart; some days I actually am! And I don’t have the energy or desire to lie when they innocently ask, “How are you doing?”

There have been many DIY projects associated with the purchase and move, and realizing all the things I can no longer do has made me feel very inadequate. Most of these are things Seth and I enjoyed doing together too. Now I just watch as he replaces electrical outlets or installs a new faucet (my fine motor skills aren’t very dependable lately). It’s also frustrating to require help to accomplish anything. (In other words, I’m obnoxiously needy!) I know Seth loves me and would do anything to help and include me, but I miss being his equal partner-in-crime during our DIY and other miscellaneous capers!

The H Word

On Monday my oncologist brought up the topic of “hospice” for the first time. Once a patient decides to stop curative treatment, they transition to hospice. As I understand it, insurance officially stops paying for anything meant to cure the person and instead focuses on what’s needed to provide comfort and symptom relief. (It’s not that we ever thought I was curable, but receiving CyberKnife, WBR, and chemo are considered such.)

I’m glad he brought it up. There had to be a first time, and now the door is open to continue the discussion. I’ve been able to deal with a lot by pretending my situation isn’t as serious as it is. And I know beginning hospice doesn’t mean I will die by a certain date. I’ve read a few stories where people flourished and even lived for a few “extra” years once they make the transition to hospice. It makes sense that some people thrive once they are out from under the thumb of constant treatment.

I feel that I should do some homework and interview a few in-home hospice providers. I’ve made a couple calls and left messages in the past, but I chicken out and never answer when they call back. My oncologist casually recommended a close, small place that has 10 “very nice” in-patient hospice rooms. I understand the benefit of having a nurse available 24/7, but I think the comforts of home will probably trump all!

Hopefully this conversation is premature. Hopefully new tumors stop appearing at such an alarming rate. Hopefully I stop becoming more and more symptomatic! I wish I knew my timetable, but there is no way to even guess. The immediate goal is to reduce the negative impact of chemo and other meds so I can spend more quality time with my loved ones. And hopefully Temodar will keep new tumors from sprouting while I’m busy enjoying life.

Pack Your Pony!

On the Friday after Christmas, Seth and I closed on a very special property where my mom and our small family of animals will live much closer to us. I’m over the moon!

Having my mom and lifelong best friend so far away has been one of the most difficult things about being sick. We have an integral bond not completely definable in terms of friendship, love, and endearment. (It will make good book fodder should anyone ever talk me into writing my memoirs.) Needless to say, it’s a key ingredient in the special sauce that is my intrinsic happiness.

And while I am too scientifically stubborn to believe my medical progress is directly correlated with stress or support of one relationship, I know many of my friends and even casual acquaintances reading this who do. It doesn’t seem like a productive ‘argument’ to have, so I’ll agree “stranger things have happened” and leave it at that. What I do know is that I will be a much happier bunny once my mom and I are more available to each other than we presently are.

Knowing this better than anyone, Seth has done his part to move heaven and earth – again.

I grew up on a small, rural farm which my mom literally built with her own hands, and sadly we lost it due to a combination of the economic downturn and unrelated domestic events. Seth and I had been work friends and dating for only a short period of time; I was bowled over when he offered to invest in a new farm, essentially providing enough capital that would allow us to keep our family (animals) intact and not homeless.

We had to find a place on a very small budget, and time was of the essence. We found a tract of land with a half-finished house in West Virginia. The distance would be a challenge (going from a 2 hour to 7+ hour drive), but what we could afford wouldn’t be anywhere near Philadelphia. I promised my mom I would visit once a month, and that’s exactly what I did for two+ years, while I was healthy and airplane flights were competitive.

Unfortunately things went to hell in 2011. My mystery illness turned cancer diagnosis made independent travel nearly impossible, and the 7+ hour drives became more frequent.

Previously Seth and I would drive out for a week-long visit just two or three times a year. Now he is schlepping me there every six weeks or so. (And not once has he complained.) Seemingly overnight the farm’s distance went from unhappy to unbearable. I was in and out of the hospital, while my mom had no one we could trust to tend to the animals, not to mention help her with a very long, stressful drive, so she could visit me.

We listed the farm as ‘for sale by owner.’ A year passed with little activity. We broke down and decided to list with a Realtor in early 2013. To date, we’ve had some interest (showings) but no offers. I have listed the property information at the end of this post and appreciate you sharing the listing with anyone who will read and share.

Seth and I knew we had to sell the existing farm in West Virginia before buying a new one. To carry an extra mortgage for an undetermined length of time would be foolish, stressful, and insane! And that doesn’t even explain that I would need to use every penny I’ve ever amassed for a new downpayment. What kind of crazy person would do such a thing?!

Me, apparently! There are few events that will make two balanced, logical and otherwise risk-adverse people take a chance like that. And frankly, I hope you never figure out where your limits are. Mine was a grand mal seizure and the discovery and growth of a dozen+ small brain tumors. Seth having to check for life signs after my seizure may have been his breaking point.

Very quickly our priorities clarified, and we made the conscious decision to move my mom immediately, no matter what that meant.

Fast forward five months, and here were are! The house needs some basic pieces (appliances, a floor refinish), and the barn and fence need patching before we can safely move everyone to their new home. Paint and other cosmetics will be projects along the way and aren’t considered critical to the move (or in the budget!)

Even though she will have to manage everything at a distance, my mom hopes to move by the end of January. I think an end-of-February goal is more feasible. She has been tasked as the general contractor on all things ‘new farm,’ and my brother (a marketing pro) will continue to focus his attention on attracting a buyer for the farm in West Virginia. Please help us spread the word about this beautiful property for sale!

* Via our custom, mobile-friendly site: http://propertyforsalewestvirginia.com/

* Via realtor.com: http://www.realtor.com/realestateandhomes-detail/2468-Dudley-Hill-Rd_Middlebourne_WV_26149__M37821-07279

* Contact our Realtor, Harry Cain, at (304) 455-2550 or harry_cain21 (at) hotmail (dot) com

I’ll do my best to keep you updated as the big move nears! Please know that moving our furry and feathery family is a delicate process! My fundraiser stays open to help me pay all expenses on my Frog List, including the cost of moving one very handsome, roan pony! 😃

Here’s to the Happiest New Year yet!

Patrick Leer

Earlier this week, lung cancer extinguished a bright star. Patrick Leer is the first cancer friend I’ve lost. It’s heartbreaking in so many ways; some were anticipated, others were not.

Patrick was diagnosed in January 2012, just a few months after me. He was stage 1 and had surgery in March 2012. After 14 months cancer-free, his doctors discovered new lung tumors and brain mets in May 2013. He had WBR for his brain and was suffering through chemotherapy to treat his lungs when he started going downhill. I know he was hospitalized with an infection but had come home shortly before he died.

I knew Patrick through his blog, our emails, and short Twitter direct messages. He was a kind man whose primary passion was to love and care for his wife, crippled by MS only four years into the 28 they would spend together. He loved her so much and spoke of the time they spent together only as a privilege and never a burden.

Patrick blogged at http://lung-cancer-survivor.blogspot.com. I’ve found myself going back, seeing if I could piece together his last few weeks, but I can’t. Maybe his daughter will finish his story someday.

Lung cancer only exists to kill, and after two years in this unfortunate club, it has taken one of my friends. The rest of us can only hold hands a little tighter and hug our loved ones a little longer. And when we tell you “I love you,” please know that we mean it so much it hurts.

Post Production

I’m pleased to report that I’m feeling human once again.

Last Tuesday I had my third dose of Camptosar (irinotecan) chemotherapy. It reminded me why some drugs are given on a “three weeks on, one week off” schedule. The body needs that fourth week to detox before you can add more poison. This is my best guess since each week it took me longer to bounce back than the week before.

In addition to making me feel like crap, this line of treatment has really impaired my blog post production.

Sometimes I think I have no more to contribute to the world of blogging. I’m nearing my two year cancerversary (diagnosis anniversary), and I wonder if I’ve shared everything there is to tell about lung cancer and the impact it has had on my life.

Treatment side effects stopped being unique long ago: fatigue, flu-like symptoms, and abdominal and back pain. Whether it’s a chemo drug decades old or the newest clinical trial for ALK+ tumors, there’s no doubt that I sound like a broken record.

I suppose I’m afraid of getting stale. I want this blog to be insightful and not just a place to bitch and moan. (I use Twitter for that!)

Camptosar: Week 1

The days immediately after treatment are not the time for clear-minded, sharp writing. But during these precarious and emotional times, keeping this blog current seems more important than my grammatical shortfalls. For whatever reason, though, this post has been particularly stubborn, requiring four days and way too many drafts!

Monday was a milestone in my cancer journey: day one of a new treatment.

Camptosar, FDA approved in 1996, is a brand name for irinotecan (eye-rin-oh-TEE-kan). It is a chemotherapy drug most often used for colon and rectal cancers. The most common side effect is diarrhea, which can be severe if not managed aggressively. The onset can be early or late. On Wednesday I began to experience the late-onset side effects. The cramping pain was much more debilitating than the diarrhea. But following a strict schedule of huge Imodium doses did the trick, and now I’m right as rain (I think). As with most chemotherapies, there is a laundry list of other possible side effects. This comprehensive list is courtesy of the ACS. My main side effect was just feeling like crap. Because that’s what chemo does: it makes you feel like crap. (Eloquent, I know…)

This is my third line of chemotherapy. I keep track of my cancer treatments and other milestone dates using a cool site called Timeglider. The events there link back to applicable blog posts too, in case you decide to check it out. 

Beginning in May 2012, I had a cocktail of carboplatin, Alimta, and Avastin to try to control aggressive lung cancer growth. Although I enjoyed the treatment schedule (infusion once every three weeks), I experienced no improvement in my condition.

In July 2012, I began Gemzar (gemcitabine). This weekly infusion was very difficult for my body to handle. I had some nasty, uncommon side effects and was rather relieved when I learned it wasn’t doing anything to help my cancer.

Now I am revisiting the chemotherapy well in an attempt to halt the cancer that has metastasized to my brain. My doctor chose this drug because it has the best chance to be effective (not because it’s going to be the gentlest). The odds of it benefiting me? Who knows. And when my doctor saw the question coming, he simply responded: “There is no other Jessica Rice.”

I began to press for more information. His next answer – the Camptosar brain met stats and his experience with a standard patient – was composed and sitting at the tip of his tongue. But I stopped him. I knew only his first answer was accurate.

There is no one else who has what I have, has responded to various treatments/trials in such ways, and perhaps, has even lived long enough with this very aggressive lung cancer to try what I’m attempting in controlling the growth of new brain tumors. I guess I’m pretty special, although not for the reason I would prefer!

My doctor once told me that every lung cancer patient – if able to live long enough – will get brain mets. Most don’t ‘get the chance,’ for lack of a better phrase. And for those with slow-growing varieties of lung cancer, that could be 10+ years! (I don’t want to incite any unnecessary panic.)

On Monday morning Seth and I arrived on time for my 8:15 appointment, and we didn’t wait longer than 10 minutes to be escorted to the back. I stepped on the scale and unwisely peered at my weight before heading into the exam room. Talk about adding insult to injury! (I should stop eating so much and retaining fluid once I’m off daily steroids.)

One nurse began the routine questionnaire while another accessed the port embedded in my upper right chest. The thick Huber needle didn’t hurt much. They flushed the direct access catheter with saline, and I made my standard funny face. I am one of many patients who can taste when some things are pushed into the bloodstream. Saline flush isn’t yummy, but at least I know when a vein is hit correctly!

The next step is to draw blood so they can run my ‘counts.’ This tells the doctor a number of things and assures that I am indeed healthy enough to receive treatment that day.

The nurse pulled back on the syringe. The saline was now tinted bright red, but it wasn’t pure blood. She pumped the syringe back and forth, back and forth. No blood.

(sigh) Sometimes ports are stubborn. And during my past two office visits, I’ve had to do some gymnastics to get the flow started. In 18 months of port ownership, I have had a real problem with it only once.

We tried the moves that nurses swear by. I gave myself a bear hug, stretched my neck around, lied down completely flat, raised my arm at various angles, and shrugged my shoulders. They flushed more, tried some heparin, more flush, a larger syringe. But then part of the plastic hub snapped off.

(sigh) They would have to remove the needle and stick me again. This one hurt briefly, but that wasn’t why I was fighting back tears.

I had remained quite calm for the first half hour, but I was starting to break. When a device implanted in you doesn’t cooperate, you’re allowed to panic. (I wrote that rule.) It didn’t help that two people had been hovering extremely close to me for a long time. I was physically overwhelmed by the invasion of my personal space. Knowing that I was reaching the end of my rope, we decided I would see the doctor and complete the rest of the exam before trying anew.

The port trauma was enough to keep me pretty quiet during Dr. Roush’s exam and our Camptosar conversation. He did the entire ‘this is your new drug’ song and dance, but much of it was a repeat of our phone conversation. He was thorough, and I didn’t have any new questions.

As I mentioned earlier, I refrained from pressing him for Camptosar odds. And I was in such a ‘bad place’ by this point, that my brain couldn’t have generated any positive conclusions from any data he could give me anyway. He finished his exam and asked the nurses to “tPA” my port.

tPA, tissue plasminogen activator, probably does a lot of things. But I know it as “Drano for ports.” A small amount gets injected just far enough to journey to the end of the port catheter: the tube that terminates at the top of my heart. Once there it breaks up the fibrin sheath that can develop over the end of the line. The build-up is like a flap. When fluid goes in it pushes open without a problem. But when trying to withdraw fluid (blood), the flap gets sucked against the tube end and nothing can come out.

The nurse injected the tPA, and I waited for an hour. Then… POOF! Lots of easy flowing, dark, rich, good, yummy blood. Yay!

I was exhausted and ready to go home, but the day’s events hadn’t even begun. My bloodwork was run, Dr. Roush approved my orders, and pre-meds were started. We were exactly two hours behind schedule.

It took more than four hours for the rest of the drugs to be infused. The pre-meds were the same I received with Gemzar: Aloxi, Decadron, Ativan, and Pepcid. Camptosar came last and took two hours for infusion. We had to slow the drip a little when my nose started running and eyes got watery. Moving forward, this will probably be a four to five hour day depending on how busy it is in the infusion room.

This is a weekly treatment given 3 weeks on, one week off. It is the same schedule I was supposed to follow with Gemzar, but my body wouldn’t tolerate three consecutive, weekly treatments. This is a totally different drug, though, so I go in expecting the best and this schedule:

Treatment Dates:
Oct 20, Oct 29, Nov 4
Nov 18, Nov 25, Dec 3

After those two cycles I will have an MRI of the brain, and the radiologist will assess my progress. Hopefully there will be a) no new brain tumors and b) less suspicious “brain lint.” If brain tumors continue to grow, that will be the end of my Camptosar experiment. I’m not sure what drug or trial would be next. Those are concerns for another day.

This week I’ve focused only on recovering as quickly as possible. Today is all about packing and travel. The wait is over, and it’s time for our awesome weekend at the NASCAR races!

Another Bridge Crossed

No matter how hard I try, I find it impossible to craft a positive post; or, as I often do, spin a note of hope or promise from what I write. I will return you to your previously scheduled, positive programming once I’m feeling a little better.

Truthfully, I’m feeling very sick: radiation poisoning, I suppose. It’s so bad that I’ve decided to restart the steroids (as my doctor gave me carte blanche to do) in hope that it will tame some of these symptoms.

This past Friday (August 16) was my last session of whole brain radiation (WBR) treatment. And surprisingly, it was the hardest.

At first glance, that seems illogical. I should have been relieved to put this behind me. I should have been glad that I no longer had to participate in such a self-destructive, daily activity. And for both of those things, I was (and still am) thankful. Yet that last day was more upsetting than any of the others.

Perhaps I was concerned whether or not I had enough radiation for it to be successful. Maybe I didn’t like the the pressure to ring the cancer center’s bell which would indicate I was done with treatment. (Clearly, I didn’t.)

But it wasn’t either of those.

This was the end of yet another treatment. Number six, to be exact. Here’s a refresher: 1) Xalkori (crizotinib), 2) Alimta/Carboplatin/Avastin (chemo), 3) Gemzar (chemo), 4) LDK378 (clinical trial), 5) CyberKnife radiation, and 6) whole brain radiation. The first four were to treat my lungs and the last two, my brain.

With each treatment, a clip of ammo is emptied, a bridge is crossed and burned. Slowly, I am being forced through a labyrinth which will result in the same dead end (pun intended) no matter which path I take. So completing a treatment is bound to be at least a little depressing, even when the treatment itself was terrible.

There is one exception to the above, and that is CyberKnife. This is a well I can visit one more time, according to my oncologists. In fact, that’s their master plan. For any brain tumors that continue to grow or sprout anew, I will receive this focused, high-dose radiation. And if my “brain lint” doesn’t respond to WBR, a chemotherapy drug specific to it is in the holster. (This assumes the brain is more aggressive than the lungs, and I don’t know if that is true.)

For now, we wait and see. In the best case scenario, my MRI in late September and PET scan shortly after will look great, and I will have a treatment-free Autumn!

There are no pro-active measures to take. Life is to be enjoyed as much (and as expeditiously) as possible. Now is not the time to hold back. Now is the time to live.

Changing the Rules

I met with my entire clinical trial staff last Thursday: doctor, nurse, and nurse practitioner.  When prompted, I explained how I felt in the three weeks since my last visit: rather crummy. When I entered the facility that morning I felt so-so; but by the time we met, abdominal pain had set in.  We talked for quite some time.  Witnessing the pain for themselves once again, they asked me how I wanted to proceed.

“I guess I’ll just keep doing this until I can’t take it any longer,” I said between the cramping.  But my doctor had another idea.

The trial protocol allows participants to take a break for up to 21 days.  She suggested a two-week break to allow my system to “reset.”  I agreed to the plan.  But there was more…

During a drug trial, the sponsor can revise the protocol whenever they wish.  In other words, the drug company gets to change the rules because we’re playing in their sandbox.  This time there were two changes that could potentially affect me: one positively and one negatively.

First, the potentially good news.  The protocol was revised to allow continued treatment even if the cancer begins to grow in a particular area.  It is my understanding that before this, you had to leave the trial if a metastasis was identified.  If we find that the cancer has spread to my brain or some other place, I would be allowed to treat that area and return to the trial.  (Odd to think of that as good news, eh?)

The bad news is a bit more black and white.  Novartis has specified a point at which they feel a patient is not tolerating a drug and, therefore, should be kicked out of the trial.  The new rule says the patient must take at least 75% of the doses each cycle.

A cycle is 21 days, so I would need to take it 15 or 16 days each cycle to meet the 75% requirement.  During Cycle 9, I took LDK378 for 12 days.  Cycle 8 was fewer than that.

My doctor is obligated to report this information to Novartis and see how they want to proceed.  Since I’m still reacting positively to the medicine (my last scan showed stability), they may allow me to continue in the trial.  But there is a chance they will conclude I’m not able to tolerate the drug and give me the boot.

Honestly, they would be right.  I’m not tolerating it.  But I’m still taking it because it has helped.  And I still want the option to participate in the trial.

My doctor asked that I make an appointment with my primary oncologist to discuss my next steps.  That was when I realized that getting kicked off is a real possibility.  Of course, I’m also nearing the average duration of response (the amount of time the average person was helped by the drug).  And that alone is a good reason to regroup.

Indeed, it’s time to figure out Plan E.  Will I try another chemo option?  Will I go to Boston for treatment?  Or maybe there’s something else I’ve forgotten.

If I am allowed to stay in the trial, I’ll probably do another cycle to see how my next scan looks.  Of course, by the end of this two-week break I could be feeling so good that I refuse to go back!

MGH

On Tuesday morning Seth and I trudged through the slush and pelting sleet from our hotel to nearby Massachusetts General Hospital. We were very early, and I was surprised that the only paperwork I had to complete was the privacy policy notice. Even more shocking was that I was called back for my appointment at 1 pm, precisely on time.

A nurse took my temperature and blood pressure before leading us to the exam room where she noted my height and weight. About ten minutes later the fellow working with Dr. Shaw entered the room. He introduced himself and explained what his role is as a fellow. Then he asked permission to recap what he understood my history to be.

He walked us through from my diagnosis to treatments and side effects, complete with timeframes. He recited everything from memory; I was impressed. When he finished I decided to elaborate on a few events, just for good measure. He hit all the milestones.

The doctor quickly realized who Seth and I are – candid, educated, with a dry, quirky sense of humor. He examined me by listening to my lungs, and we agreed that the standard exam in this setting is really just for show. (Every doctor/NP tells me “your lungs sound good.”) He felt my lymph nodes and noticed the permanent scars and bruising where a surgeon butchered me during port installation.

We talked some more and he summed it up quite accurately: “So it’s been a real shit show.” I grinned and Seth exclaimed “Yes!”. The doctor certainly knew we would appreciate his acknowledgement and candor. He excused himself, and we awaited his return alongside Dr. Shaw.

Dr. Alice Shaw is a thin, petite woman with short, dark hair. She entered the small room, introduced herself, and sat in one of the companion chairs between Seth and me; I was sitting on the exam bed.

We began our conversation with a recap of LDK378. She shared how pleased she was with my improvement, particularly between my early January and late February scans. The trial team at Fox Chase told me there was “some improvement,” but Dr. Shaw communicated with enthusiasm that made us realize it was quite measurable.

Next we discussed my side effects. Her questions focused on finding consistencies and patterns. I shared my thought that there is a ‘build up’ that occurs within me where it may take a certain amount of the drug, even over days – to trigger a toxic effect; that this is why I eventually have side effects at 450mg as I did at 750mg, except that they take a few days to manifest. She is going to work with my current trial doctor and Novartis to see if my schedule can be modified. If I can take off weekends, for example, maybe that would give me a few light or symptom-free days each week.

Next we agreed that even if I stay on LDK there will be a day I need to move to a different treatment. Thus began our discussion of HSP90 inhibitors, 3rd generation ALK inhibitors, and chemotherapy. I’ll do my best to condense things for this medium. But please know nothing is as cut and dry as it seems. It’s also important to note that I am trying to substitute a decade of medical training with a phone call, an afternoon visit, and what I can read online. Here we go…

3rd Generation ALK Inhibitors

It’s easy to liken drug generations to the way technology progresses. A new iPhone is developed to have the latest and greatest features and technology; it’s the same way with Windows operating system: Windows 8 is after Windows 7. The first generation of ALK inhibitor was Xalkori (crizotinib). The second generation includes LDK378 and a drug called AP26113. The next drugs, when developed, will be the 3rd generation.

It seems that a patient is allowed to participate in one trial for each generation. For example: now that I have been on LDK, I am excluded from entering the AP26113 trial. I will be allowed to try a 3rd generation ALK drug when available. Dr. Shaw noted that it would be important that I enter a trial only after a therapeutical dose has been found. In Phase 1, scientists start at small doses that they know will be non-therapeutic (aka useless). They escalate the dose until a certain level of toxicity is found. Although this part of the trial isn’t meant to see if the drug works, patients are still getting scans, and that data isn’t ignored. Dr. Shaw recommends that I wait until patients show some progress before entering a trial.

Like many other things, it is difficult to know when a 3rd generation ALK inhibitor might be available. I think Dr. Shaw estimated that these drugs are at least one year away from beginning trials.

HSP90 Inhibitors

HSP90 is shorthand for heat shock protein with a relative mass of 90,000. It is a type of “chaperone” molecule which means it helps other molecular structures. Per Wikipedia, it “assists other proteins to fold properly, stablizes proteins against heat stress, and aids in protein degradation. It also stabilizes a number of proteins required for tumor growth…”

Researchers believe that HSP90 helps ALK fold properly and that without it, ALK is unable to do its job – make tumorous tissue – efficiently. If accurate, no HSP90 should equal no more tumor growth, even if ALK continues to be present.

There are at least three HSP90 inhibitors I’m aware of. Dr. Shaw thinks this type of targeted therapy may be my next best course of action. But it’s important to pick the right one – we only get one shot. That’s because, similar to the ALK inhibitors, participating in one HSP90 trial will exclude me from participating in the others. If the decision was made today, she would recommend I try a drug called AUY922. (I’m going to spare you the details of the others for now.)

AUY, another creation from Novartis, is given via a weekly infusion. The trial, now in phase 2, began more than a year ago. Some patients went to LDK after Xalkori (crizotinib) failed them; others went to AUY. And it’s probable that those patients will switch to the other (just as I will) when the first one selected fails to control cancer progression.

But there’s a catch… The trial is in Boston. And I’m not.

It is a weekly infusion. And during the first two cycles (one cycle = three weeks) there are additional visits peppered between the weeklies.

I’ve only begun to stress about this. Boston is a 6+ hour drive. Dr. Shaw mentioned the possibility of receiving treatment at Yale. That would be 4 hours – better, but still not easy. Amtrak is 6 hours and $200 roundtrip, per person to Boston; New Haven is proportionally less. Yes, most of my concerns are about time and money. But truthfully, I’m not the confident, healthy world traveler I once was. My body won’t hold up for a long day trip, and I’ve grown very dependent on Seth to help me get around when there would be a lot of walking otherwise.

I’m not ruling out AUY922; I’m just saying there are a lot of barriers between the treatment and me.

Chemotherapy

The other group of available treatments is chemotherapy. Dr. Shaw named the same two remaining drugs/families that Dr. R did. Taxotere (or something in the Taxain family) and Navelbine. Previously I wrote about Navelbine having some abdominal side effects. Dr. Shaw said that wasn’t the case, so I must have misunderstood Dr. R when we spoke.

Unlike the targeted therapies, there is no way to estimate how a cancer will respond to chemotherapy. It’s trial and error with a high potential for nasty side effects.

These drugs are commercially available so they have additional flexibility; we can insert them where needed between other treatments. But only once, per drug. If I try Taxotere and it doesn’t work, that option is exhausted.

Here’s an example of use: If I am unable to summon the resources to go to Boston for AUY as my next course of treatment, I could do chemo instead to see if that would work for a while. Then maybe I would do AUY after that. I think of chemo as the Joker in the deck. (Of course, the joke may be on me if I lose my hair and get very sick.)

I’ve summarized the facts we discussed, but I couldn’t possibly illustrate the emotion that layered our conversation. I tried my best to be professional and keep my shit together. But there were times I teared up and cried, no matter how hard I tried to hold it back. And when I cried, only twice, the room fell silent and time stood still. I felt respected; no one tried to tell me it would ‘be okay.’ That would be a lie. And when I regained my composure the conversation continued as if we hadn’t missed a beat.

The visit was emotionally charged and quite complex. And although there are options, I have no clear or easy path from here. It’s taken me a few days to digest it. Writing this, though, I realize I’m far from done.

Doctor, Advisor, Advocate

On Tuesday I received a long-anticipated call from my oncologist, Dr. R. He began, “How are you?”

“I’m okay,” I lied.

“No you’re not.”

The first order of business was to let him know how much I miss him. I shared how I have been quite disappointed by my trial team at Fox Chase.* It wasn’t necessary to rehash the details. He would get the gist as we went along.

My trial doctor (Dr. M) had recently emailed Dr. R an update. It said that I’m having difficulties on LDK 378, and she may try a new drug for the side effects.

I detailed my symptoms and shared what had been done to mitigate the side effects: dose reductions, change in dosing schedule, and a number of drugs. We discussed her newest proposal: Nortriptyline. She had included that in her email, and he had already looked into it.

“I wouldn’t recommend it,” he began. “I’m afraid it would interfere with your other antidepressants, and that could be very risky.”

Damn right, I thought. A good doctor understands your priorities, even if they aren’t his specialty. For me, good mental health – free from major depression, self-doubt, anxiety, and hopelessness – is paramount.

My gut instinct was to decline the Nortriptyline. Hearing my trusted doctor make the same recommendation cemented the decision. No one (as far as we know) has used the drug for LDK side effects, and, for me, the risks outweigh the potential benefits.

Next I told Dr. R how I asked Dr. M if she could facilitate my conversation with Dr. Shaw.

“Did she call or email her?” Dr. R asked.

“No. She had someone call me with the general phone number.”

I detailed my twenty minute conversation with Dr. Shaw, and he simply responded, “so when is your flight to Boston?” i detailed my plans to see her this month; he is very glad I’m going.

Next we discussed the HSP90 inhibitor trials. He suggested I exhaust the trial options before heading back to chemotherapy. Hopefully they will buy me a lot of time. When I’m done with the trials, my (possibly last) course of action will be Taxotere. He feels that the odds of response are in thirds: 1/3 chance of no response and continued progression, 1/3 chance of knocking back the cancer a bit, and 1/3 chance of stability (no better, no worse). Those are much better than what Dr. M expressed: 6%.

The most common Taxotere side effects are hair loss and neuropathy (tingling or loss of sensation in hands and feet). There is less chance of nausea and vomiting.

There is another drug, Navelbine, which has a very low rate of response. Some common side effects are abdominal pain and cramping. It’s obvious that it would not be a good choice for me.

As we neared the end of our conversation, I expressed to him my philosophy on future treatments. “I know that as long as someone wants to keep fighting, there will always be something else to try,” I said. “But I don’t want the last month of my life to be my worst. Once we exhaust all the treatments with promising odds, I’m going to call it a day and begin in-home hospice.”

“I don’t think we’re near that,” he said.

“Good,” I said, “I just need you to know where I stand.”

Our conversation ended with his request that Dr. Shaw copies him on her findings, an update on the new office location, and some other pleasantries.

I hung up the phone with a sense of confidence. We had a clear plan of action, and Dr. R will continue to be by my side each step of the way.

* My goal is not to disparage the entire Fox Chase institution. I am certain they have many capable staff members who help thousands of patients. My comments apply only to the few people in charge of my care.

Silver Belle

Shortly after my last Gemzar infusion I noticed I was no longer losing hair at an alarming rate. Within a month I was losing only a few strands a day, as is normal for me. I didn’t realize it then, but the regrowth must have started too.

My new hair is approximately 2.5″ long. It sticks out in unruly bunches despite my attempts to tame it with headbands and scrunchies. But that doesn’t bother me much – I’m glad to have it back!

That said, I’m very perplexed. An alarming amount has grown back as bright and sparkly as tinsel on a Christmas tree! It’s most noticeable at my hairline and part, but I assume it is consistent throughout my mane.

I started getting a few grey hairs in my mid twenties. I never really cared. It’s something that happens to everyone. Plus, with dark blonde hair a few grays don’t really stand out. I also highlighted for years, and some were probably randomly colored, too.

Even looking in the mirror last week, my reaction was aloud and with awe: “Oh wow! Would you look at that?!” I couldn’t believe that a lot of the new growth was bright silver. And while I’m not running to the hair dresser, I am curious to know what happened.

There was recently a feature on TV explaining why the president has greyed so quickly. It discussed how certain cells can age four times as fast when under great stress and cause premature graying in people who are already genetically predisposed to it.

But I wonder if my case isn’t more aligned with some of the opinions in a September 2012 Huffington Post article.

It notes how there are a series of processes that take place during hair growth. And an interruption in the process where melanin-producing cells are coloring the hair is responsible for non-pigmentation of the hair shaft. And an “interruption” could be a number of things; the article cites head trauma, surgery, nutritional deficiencies or “any other stress that the body perceives as a burden.”

I also wonder if I could have fried some of melanin-producing cells during my rounds of various chemo drugs. Or maybe by drowning myself with a trial medication whose complete impact on the body is not yet understood. It is also possible that my mental stress is causing this too: but I think that is less likely. I’ve managed a whole lot of stress long before cancer. Wouldn’t I have grayed then?

Those are two schools of thought, although I’m sure there are others. I can’t yet say how much of my hair has grown back gray. It’s also worth noting that the strands that never fell out have not turned gray – at least not that I’ve noticed.

I guess it will continue to be my own personal little mystery. And truthfully it really doesn’t matter. Whether it grows blonde, gray, blue, or green, I’m very glad to have it!