Next steps

Where to start?  It’s been a busy week.  On Thursday I went to Boston for allergy testing. I sleep on a natural latex mattress and had been using a pillow out of the same material. Several mornings in a row I awakened with a lot of swelling around my eyes and cheeks. After spending the night at a friend’s home and waking up minus the swelling, I returned to my own bed only to have it happen again. I replaced the pillow with one that wasn’t latex and  voila, no more swelling. Because I am in and out of a hospital so much, there was a chance that I had developed an allergy to latex. A prick test (yes, that’s what they call it) came back negative and I am awaiting a blood test, but it seems unlikely that my facial edema was related to latex. A minor medical mystery.

On Saturday, we had a belated birthday party for Peter, who turned thirteen in April. Seven of his buddies spent twenty four hours at our house. The air was thick with adolescent testosterone. When they weren’t eating they were out in the woods using each other as target practice with a battery of air soft guns. They all had on protective gear and were instructed to not shoot each other in the face and/or point blank, and, for the most part, they complied.

The entire air soft concept took me awhile to warm to. Despite my own access to not only cap guns (remember the smell of a freshly detonated cap?) but twenty two rifles as a child, as an adult and a pacifist, I have a general policy against weapons of any sort. Not easily thwarted,  a then-three-year-old August would chew his toast into the shape of a gun. Gradually I acknowledged that an attraction to things that shoot was somewhat intrinsic, and rather than banning firearms, I did my best to stress respect for life while allowing for fantasy play. These new guns do take it to another level. However, the boys had a great time and we all survived.

Sunday afternoon we partook of a more gentile activity, as Peter had a music recital. It was lovely to listen to a wide range of ages and abilities on a variety of instruments, including Peter Duff on guitar.

I turned in early that night, exhausted from the boy party, a big boy party (remember Go Dog Go and “a dog party, a big dog party”; I cut my reading teeth on that book). Yesterday morning I left the house at six a.m. to follow that familiar path down the highway to Boston. All the trees are almost completely leafed out now, and everything is so green. There was also a lot of roadkill. I saw opossum, fisher cat, coyote, deer, as well as some mangled black fur of unknown origin. It is a sad rite of spring;  young animals unaware of the great danger that crossing a highway poses.

At my  appointment, Alice (Dr. Shaw) laid out my treatment options in more detail. My next scan is in three weeks, and will help us to assess how quickly the cancer is developing. At some point I will need to undergo another biopsy, in order to learn more about why I have become resistant to the 1066 as well as to determine what the most appropriate therapy might be. If the pleural effusion has gained in volume, some of the fluid could be removed and analyzed. The presence of the fluid makes it viable to remove ‘live’ cancerous cells that could then be cultured.  Clinically that would be a real advantage, but from a therapeutic perspective a pleural effusion can be difficult to manage, so I am hopeful that such a scenario is not an option.  In lieu of that, I would likely have a wedge resection via VATS, as a punch biopsy would not procure enough material.

As I mentioned before, a HSP-90 inhibitor might be the next logical step.  HSP-90 is an acronym for Heat Shock Protein 90.  In healthy cells, HSP-90 acts in part as a chaperone that shields proteins from destruction. In cancerous cells, a number of proteins can be over expressed and inhibition of HSP-90 may induce apoptosis (cell death) through inhibition of growth signaling pathways. A phase II trial for HSP-90 is now enrolling patients with ALK mutations at MGH.

Alimta remains a fallback possibility and we will be keeping our eyes on a couple of ALK inhibitors in the pipeline (in addition to Ariad, Novartis has one in development).  My fingers are crossed.

In a couple of weeks, ASCO will have it’s annual meeting and this year the PF-02341066 trial results will be presented in a plenary session.  I am interested in seeing the newly published data, including the actual number of participants who, like myself, have relapsed.  I am also happy that the resulting exposure and publicity will make so many more oncologists and patients aware that people with NSCLC should be tested for mutations. It really is the dawning of a new era in cancer treatment.

11 responses to “Next steps

  1. I joined the 1066 drug trial 9 weeks ago and have gotten back my first PET scan results. Several of my tumours were described as having “no residual activity” and several tumours have shrunk. 1066 is truly an amazing drug.

    I read an article by Rabiya Tuma, PhD in Oncology times which quoted Dr. Carbone of the University of Colorado as saying there are “dozens of new drugs that are being tested that are better ALK inhibitors [than 1066].”

    If true, this would obviously be good news but so far the only specific reference I have read about is the Ariad press release about their ALK inhibitor. Your post is the first I have heard about Novartis having an ALK inhibitor. I did a quick Google search and found nothing. I was wondering if you can share more about what you have heard about Novartis’ ALK inhibitor.


    • Congratulations on your response to the 1066–quite a feeling, isn’t it. My oncologist has spoken to me about Novartis, but when I write a blog I always google and double check to make sure I’m not putting any false information out there. Here is a link to one of the articles I found which mentions not only Ariad and Novartis, but another potential maker as well. It is very encouraging, and many of them sound as if they are even more potent than 1066. I hope there are not too many hurdles for them to cross before they go to trial. Linnea

  2. Pat & Will Plattner

    A belated happy birthday to Peter! He’s unrecognizable in his “shooting gear”, but we are sure he is still as handsome as ever!! Good luck with your treatments, Linnea. You are, as always, in our thoughts, and we send good energy your way from Chapel Hill!!

    • Pat and Will, that boy in the disguise is one of Pete’s friends, but Peter is still handsome (getting tall as well). And thank you for your good thoughts and energy. Linnea

  3. Linnea,

    Hi, it is really nice to hear you through your blog.

    I am the partner of Stacy Raye, who started on the trial Sept 22, 2009. We have been having a wonderful time, just getting back to life, the regular stuff, readying for our summer camp that we started and still run, Stacy going to the gym, going away this past weekend to a northern california coastal town, seeing friends. It has been incredible to not have some new crisis just around the bend, which was what life was like between when she was diagnosed in Feb 2009 and Sept 2009.

    Some challenging news though for us yesterday. We received scan results from May 7th and there has been new growth in certain areas-from 4mm to 7mm in one instance in her lymph around the mediastanum. Still, like you said, it still is probably 3/4 at what it once was, and Stacy still feels great. What an incredible gift this drug has given and we are so thankful to the researchers and pharmaceutical companies.

    We talked with Dr. Shaw yesterday (she was our first connection with genetic testing, we flew out there to see her), and she explained some of the new possibilities to look into. Our local doctors are at Stanford, Dr. Wakelee and for the clinical trial at UC Irvine, Dr. Ou and we are in consultation with them too.

    All the best,


    • Heather, yes, this has been a gift to return to normal life and activities. The HSP-90, which might be my next option, is infusion again (twice weekly, every two weeks), so it will not be quite as simple as twice daily capsules. I am going to try to stay on the 1066 as long as possible, although my next scan will probably tell us more.
      I’m sorry that Stacy received that news–it’s not what you want to hear, but you have the right attitude. I’m glad you are yet consulting with Dr. Shaw. I mentioned at one point that I “knew” you from Inspire, and she said “Oh yeah, those guys are great”. She is so smart and such a love.
      Please continue to stay and touch and know that I think of you both. Linnea

  4. Hi Linnea,
    Thanks for including so much valuable information for us with ALK mutations in your blog. I didn’t know about HSP-90. Will check on it, along with the info of other ALK inhibitors under development by other makers.
    There are some people in the trial in Korea who have relapsed. Dr. Bang should mention it in his report at ASCO.
    I’m glad to know that you are well. (You must be feeling very well to host a party for big boys!)
    Love, Yuki

    • Yuki, I am really looking forward to Dr. Bang’s presentation. Hopefully it will be easy to access on the web afterward. I still feel very good, maybe just a wee bit more SOB (love the double entendre of that acronym). I hope you are feeling very well too, and know that I will continue to share any information I may become aware of. Dr. Shaw is really, really good at keeping me in the loop; something I so appreciate. As I don’t have a background in science or medicine, I research that which I don’t understand (lots) and try to break it down in a way that is comprehensible. Linnea

  5. Options before treatment options? choose your poison, VAT or pleural effusion?, them be a V.I.P atient.
    Big If, inclusion criteria: for “mutants” with life expectancy >/= 3 months. doctor patient

    I am scheduled for CT scan on May 28, just 3 weeks after I started with Tarceva, probably an error or sorry for my teenager looking nose.
    I feel like a Nobody, nobody ask me about targeted therapy here.
    Good research and trials now available in Canada for very low cost cancer drugs:
    EvAngelos Michelakis in the University of Alberta, Canada, closer to find the Magic bullet with DCA priced at less than $100 per year.

    Also Clinical trial in Toronto for cancer drug at 42 cents a day

    We must play to win. Princess Margaret Hospital (Canada is a monarchy), has a home lottery with over 30,000 prices, many are donations and 1 in 10 wins, cost $100 per ticket or 3 for $250.
    I won 3 out of 4 times before and got better now, my 3 tickets won small prices: $100, a digital camera and a mountain bike!
    Lucky Strike…
    Many ways to profits with cancer Three Promising Small-Cap Cancer Plays
    Good luck
    When we are at war with cancer teenagers play war games.
    Remember “Those who forget the past are condemned to repeat it”
    I remember arriving in 1969 and living in San Francisco, 100,000 marched on chanting “Draft beer, not boys”, “Hell no, we won’t go”, “Bring our boys home, “Eighteen today, death tomorrow”. Since I was drafted in Argentina, my pacifist and “general policy” included not to trust generals or police.
    Peter may find out soon that is better to “Make love, not war”. We never owned a gun.

    My father was a basque, I was born in 1938, the Spanish civil war 1936-1938 with approximately 1,000,000 deaths divided country and families, of 6 brothers 3 fighted in opposite sides, 4 ended in Buenos Aires. Franco won with help from Hitler, we couldn’t go back. One brother too young to fight became the first multimillionaire in the family. Lucky Strike.
    But Spain under dictatorship have freedom fighters and terrorists. In 1976 I woke up to news of my uncle Angel Berazadi killed by ETA (Euskadi ta Askatasuma) basque for Fatherland and liberty, he was kidnapped and after 2 weeks with government frozen bank accounts the family could not paid ransom. It was big front news in Toronto and a turning point, ETA reduced military activities. War is very dirty.
    Democracy triumphed latter but so much suffering starting with an democratically elected Republic. We lost roots and family home, now a rural guesthouse in a wonderful location.
    Nice eh!

  6. I found a couple of interesting links I thought you and others who are ALK positive might like to know about. The first link is to the PowerPoint slides presented at the 2010 ASCO conference (see ). I found the slides both informative and uplifting. Also if you go to Ariad pharmaceutical’s website and click on their investor tab they have two links to posters they presented at ASCO about their ALK inhibitor ( ap26113). I found the link about AlK mutations particularly interesting. From their quarterly report it sounds like they are going to spend most of the rest of this year completing tests to submit to the FDA in order to get approval to start a phase 1 study. I hope that happens in the first half of next year.

    • This is great, thank you so much. I tried like crazy to access ASCO information, but was not as successful as you have been. Please keep me posted if you see more good stuff. Linnea

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