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.

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19 responses to “MGH

  • Ray

    Remember you have a friend who lives 10 minutes from Yale New Haven hospital who has a guest bedroom that is yours whenever you need it.

  • juli@djvassociates.com

    Jessica, I am always amazed & impressed at the beauty and intelligence of your writing. If it would be OK with you, I would love to meet you in person – and of course, meet Blossom too. If you would be up for that, please let me know. In the meantime, I am so very impressed that the experience you had with Dr. Shaw & her staff was so positive. It sounds like all involved received A+ in their Bedside Manner courses – that is as it should be. My thoughts & prayers for you continue. Regards, Juli

  • juli@djvassociates.com

    Jessica,

  • kimmywink

    Options are good. I wished they looked more appealing to you and Seth. Hope your able to sort through them without getting overloaded. Brainless TV might be a good friend. Ray’s comment might have helped!

    • Jessica

      Thanks hon. It’s not that I’m Debbie Downer… Just a die-hard realist!

      Yes, it’s a relief to know that I have a friend nearby if I end up at Yale. Now I’m off to read YOUR post! :p

  • Barbara

    Jessica, I’m a little south of Boston with a guest bedroom that you are welcome to stay in as long as you need. Barb

  • Craig

    Jessica,

    It looks like you learned some good information that you didn’t already know, is that right? From your write-up, it sounds like you learned it well. I’m glad you discussed your side effects in some detail and that Alice is trying to get some extra latitude for you on dose or pattern from Novartis. I am looking forward to 3rd generation drugs, too — I’ll need one if the kind of drug-resistance I get continues to be something that a new generation of ALK/ROS1-targeted drug can handle.

    Did you also discuss other avenues of research being done elsewhere, things not targeting ALK specifically but something else that many lung cancers have?

    It’s so nice to see people offering up accommodations in New England. For what it’s worth, the American Cancer Society offers a Hope Lodge in Boston (free lodging). I use the one in the middle of Massachusetts, but there is also one in Boston if you will stay at least 3 nights each time. (But apply before you need it — there is a backlog.) I can imagine that could be handy during the first couple of weeks of a trial. I’ve knew one person from California who stayed a couple of months for treatment at MGH.

    I hope the meeting with Dr. Shaw, once you’ve had time to digest it, will have given you as much peace of mind as possible under the circumstances.

    Best hopes,

    Craig

  • Patrick

    Jessica, kudos on the way you covered such technical mumbo jumbo in a easy to read format. Reading your post though I am growing more concerned that survival rates of lung cancer are not only severely impacted by the options available if personal wealthy but increasingly geography, kind of a city mouse medicine vs country mouse health care. Most importantly I am glad to read you have the options to maximize survival.

    • Jessica

      Patrick,

      There are definitely different options available in different places. My mom currently lives in rural WV, and I struggle to find her quality medical care. Some things are adequate, most aren’t.

      With regards to breakthrough medicine: I think this will be a problem for decades, if not centuries to come. It’s the nature of the beast. Everything has to start somewhere.

      As a society we have changed nature’s laws. It used to be that if you were diseased, you died. There was something wrong that took you out of the population, originally for the betterment of the species.

      But we are now in the business of cheating death. From surgery for fetuses to drugs like the ones used to extend my life, we are going against what would otherwise be natural.

      Instead we’ve imposed our own sort of culling. In theory, the strongest, smartest, or prettiest could get access to the treatments needed to live. That’s not true, of course, but isn’t it ironic that in our efforts to beat the system we have created one anew?

      I have started a post to this extent many times, but it never comes out as I want it to. Perhaps your reply will be my jumping off point.

      Thanks, as always, for reading, responding, and caring. xo

    • Craig

      I’m impressed by your perspective on how humans override Darwin’s survival of the fittest for their environment (an increasingly polluted one in our case). FWIW, I’ve heard it said that people who grow up on farms often have a more down-to-earth perspective about it all than “city-folk”.

    • Jessica

      Thanks, Craig. That means a lot to me. Lol, and yes, I’m certainly not city-bred. If I ever wrote a book, it would probably be on this subject. Unfortunately I just don’t have enough to say to fill all of those pages. I suppose I’m destined to blog. 😊

  • Barbara

    Jessica, I don’t feel like a stranger. I’ve been following your journey from the beginning. I’m a two time cancer survivor and got great treatment at Dana farber in Boston. It’s just my h and I here now so there is plenty of room for you and your bf. please seriously consider our offer.

  • Sjoukje

    Thanks for sharing Jessica! Im glad to read that you had a positive experience with Dr.Shaw. She, and her staff, sound really nice and professional. Also glad to read that you are far from done, eventhough the road will not be an easy one.

    Sending you much love and lots of bunny nosebonks too of course!
    xx

  • linnea11

    Jessica, thank you for the informative post and I’m glad your appointment went so well. And I am wondering, were you there yesterday (Thursday) as well? After reading your post I wondered if perhaps I had seen you in the waiting room on 7B….

    Linnea

  • Donna Brown

    How brave you are. Thank you for writing about your visit with Dr. Shaw. I am in Seattle at Fred Hutchison Cancer Research Center. Would like to see Dr Shaw for a second opinion. How to decide which road to take so you have the best chance to live? Makes the brain hurt!

    • Jessica

      I hope you are able to make the trip to see Dr. Shaw. Yes, the decisions are difficult when the whole situation is lose-lose. BUT we do our best and surround ourselves with love for as long as possible.

      Good luck, my friend.

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