Tag Archives: LDK378

As it turns out, not quite enough (of me)

The word from the lab looking for the PD-1 protein in my biopsy is that there weren’t enough cells (cancerous or otherwise) for a thorough analysis. If it is determined that enough tissue was ‘banked’ after the biopsy, a sample will be resubmitted. Dr. Shaw is not particularly optimistic.

So, the plan for the moment is to watch and wait. We will rescan in November and as long as I don’t become significantly more symptomatic, my situation will be reassessed at that time. In lieu of a PD-1 antibody, I could potentially return to one of the ALK inhibitors which I previously benefitted from:  LDK378 or Crizotinib—although as the LDK is still in trial, I’m not sure how that would work. Chemo remains an option but given the slew of side effects, I would say it is the least attractive choice. What I’m really hoping is that I can hold out until the next ALK inhibitor comes to trial (rumored to be end of this year or beginning of next)—the timing could be just right for me.

In the meantime, my plate is plenty full. I’m looking for a place to live as well as a means of support. I realize that statement implies much and answers little; I’ve got a lot to process and when the time seems right, I will discuss this new chapter in my life.

And this is where the road forks: 12/12/12

L1020594Tonight I will take my final dose of LDK378. At 7 am sharp tomorrow morning, I will report to radiology/surgery to get prepped for a needle core biopsy. I am hoping that it is uneventful (no pneumothorax), and successful: that sufficient cancerous tissue can be harvested and that the mechanism of my resistance will ultimately be determined. Also on the table–possible gene sequencing.

It’s been a good run; about fifteen months on LDK. I am exceedingly grateful for this deposit in my time bank, but I look forward to the possibility of ramping up my quality of life again. As it stands now, I will be starting chemo (carboplatin/alimta) next week, so it’s a given that I am going to feel worse before I possibly feel better. I’m taking the long view though…

My instructions for tonight include NPO after midnight. I know this means I should refrain from eating or drinking, but I decided to find out what the letters actually stand for:  Nil Per Os. That’s latin, but I’ll take a wild guess that it does in fact mean nothing by mouth (or NBM in english!).

Tomorrow’s date is 12/12/12. There will be more than the average number of weddings, induced labors (who doesn’t want a lucky baby) and lottery tickets purchased as well. I like to think it is an auspicious date. But it seems I almost blew it; my go-to-biopsy outfit was to be some black yoga pants. However, according to numerologist Swetta Jumaani in an article from the NY Daily News, “Black is a very inauspicious color,”……. “Something bad always happens.”

Out with the black, in with something colorful and not unlucky.

Me again

I would like to thank all my friends from INSPIRE for sharing your individual stories. I believe by speaking out you are empowering not just yourselves, but others who have been impacted by this devastating disease, lung cancer.

Now it’s time to update my own status.

I met with various members of my team last Wednesday. Due for a scan in two weeks, they bumped it up to that day after I described my growing anxiety over steadily worsening symptoms; cough, fatigue, and bronchorrhea.

Bronchorrhea is an uncommon symptom associated with the variant of lung cancer I have, mucinous bronchioalveolar carcinoma, and it is making bedtime miserable. The moment I lay down, my lungs start to crackle. For the next 30-40 minutes, I cough, hack and spit as I clear 2-3 ounces of frothy mucus from my windpipe. It is exhausting and at times frightening as well. There is no antidote for this sort of bronchorrhea, other than treating the underlying cause, the cancer itself.

Although some of my cancer is yet responding to treatment, it is likely that a new clone or mutation has been selected out for; one that is resistant to LDK378. This scenario is suggested by the appearance of my scans, as my cancer is returning in a very different pattern than it has previously. Rather than a gradual consolidation of diffuse nodules, much of what we are now seeing resembles billowing smoke, and is likely responsible for the bronchorrhea. However, the only way to confirm this hypothesis is to retrieve some cancerous tissue.

Fortunately, a biopsy is now considered doable and a core sample shall be removed from my left lung on 12/12/12. In addition, I will take my last dose of LDK378 on 12/11 and one week after the biospy, I will start chemotherapy; four rounds of Alimta/carboplatin followed by continuous maintenance with the Alimta alone.

When I underwent chemotherapy in 2005, I had a port installed. As it is a foreign body, there is a risk for infection and there are now a limited number of antibiotics that I can tolerate, so at least initially, I shall forgo the port. Should infusion through an IV prove too difficult, we will reconsider.

So that’s the scoop, from the medical perspective.

YES!

This one’s a YES!

On Monday I went to Boston for my six week CT scan. My mom, Evalynn and stepfather, Jim were visiting from their home in Utah and they came along. After having my labs drawn, Dr. Shaw and Margeurite (all time favorite nurse) were kind enough to step into the waiting room for a brief introduction. It meant the world to my parents, and made the day a special one.

That evening Alice (Dr. Shaw) called after having viewed the CT scans along with two radiologists. The results were a bit astounding–there appeared to be no significant change. This news caught me  a bit off guard as I had been preparing myself for anything except stability. Now I had the option of staying on drug for six more weeks. It took a couple of seconds to adjust my mindset (cancer really teaches you to think on your feet) before deciding yes, this was the obvious choice. As we ended our conversation, Alice cautioned that she would receive confirmation once measurements were taken and the actual report was written.

Yesterday Alice called once again; my scans were really, truly, stable. So, here I am, on the edge, but holding. And I am fine, make that better than fine, with my current status. I’m on a journey, and this traveler plans to take her time. It’s going to be back roads, blue highways and the scenic route for me.

Six weeks notice

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This is day two of a week long visit from our twenty six year old son August. We hit the ground running yesterday, with a trip to Massachusetts General Hospital. David and Peter came along as well, and August got his first peek into this particular window of my life.

It turned out to be a bit much for him. A lack of geographical proximity has provided August with an emotional distance from my cancer; accompanying us on a visit to the hospital brought it all home, and shortly after we were shown to our private room, he broke down.

When Dr. Shaw came in, it was just David and myself. She asked some careful questions as to how I was feeling. Great, I said; heaps of energy and rock solid resolve. But when I lay down at night, the crackling/wheezing in my lungs was a potent reminder of where I was heading.

I had in fact just arrived: in clinical trial parlance, progression. Defined as (not 30%, as I stated in an earlier blog–now corrected) 20% progression from the nadir–or the least amount of measurable cancer in my lungs since starting trial. To break it down another way:  A positive response in a clinical trial is defined as a 30% or greater reduction in tumor burden. Ultimately, my cancer decreased in measurable area by 63% ; that was my personal nadir. My latest CT scan shows a 21.8% increase from that lowest point. However, I still have approximately 40% less cancer than when I started this trial.

My cancer is returning or progressing relatively slowly and I continue to maintain an exceptionally high performance status, (ability to complete daily tasks). If this were a standardized rather than experimental treatment, I would undoubtedly eke several more serviceable months from it.

As a participant in a clinical trial, I am bound by protocol (literally). Happily, Dr. Shaw pulled a rabbit out of the hat; Novartis has agreed to let me to stay on LDK378 for one more cycle. We now have six weeks to figure out where to turn next, and that softens the blow considerably. Soon, I will embark on a new adventure. In the meantime, life will be lived to the fullest.

After saying goodbye to Dr. Shaw, we collected the boys and grabbed a late lunch. Not deterred by the fact that it was already half past three, we continued on to Ipswich and Crane Beach.  Arriving just as the crowd for the day was thinning, we were met by clear skies and balmy weather. August and Peter took a quick dip in the chilly Atlantic and soaked up the late afternoon sun while David and I walked the length of the beach as the tide came in.

But we weren’t finished yet; August had requested dinner at the Clam Box, where the four of us worked our way through two enormous plates of fried clams.

Stuffed, but with much food for thought still on our plates, we headed home.

Back on LDK378

First, the good news. On Monday my liver enzymes had fallen to the acceptable range and I went back on LDK378 at 400mg. As long as I am on this particular therapy, I will stay away from alcohol, levaquin and NSAID’s (advil had been my anti inflammatory of choice). I have been eating lots of liver loving foods (beets, beets and more beets) as well as a daily dose of prunes and bran: my friend Mateo suggested All Bran Buds, which I am happy to say are highly effective.

For the time being, ice cream has been added to my diet, and I have already gained back four of the pounds I lost. Happily, my wheezing is much improved and my energy is back in spades.

Perhaps best of all, my spirits have risen accordingly; I am back in fighting mode.

 

 

Time for a personal update

Now that it’s all over but the shouting, I can tell you that I am ever so happy that last week is history.

It had been an unsavory mix of constipation, infection, insomnia and liver toxicity. I felt awful, with a fever three nights running. Aches and chills, splitting headache, nausea and a total absence of appetite. On Tuesday, I started taking levaquin. On Wednesday, I had a chest CT scan and labwork:  my liver enzymes, which had been rock steady for weeks, were starting to climb. I was to stop LDK378 and levaquin both. Although exhausted, I never managed to sleep a wink that night; my mind going a million miles an hour. I have learned since that insomnia can be a side effect of levaquin, and in conjunction with nightmares, hallucinations and a host of other symptoms, a possible sign of a serious reaction.

Over the next two days my liver enzymes continued to rise, peaking at around ten times normal, although still significantly less elevated than the last go around with toxicity. I started on azithromycin for the chest infection and Thursday evening, after eight days without a bowel movement (which proved stubbornly resistant to both Miralax and glycerin suppositories), a prescription of lactulose finally did the trick. As tired as I was, I could have done a little jig. I also received this congratulatory email from my mother in law, with some advice should I ever find myself in such a ‘situation’ again:

Hallelujah(!) and (I’ll say it, so Kill me!) praise the Lord for Ducolax!  Could not believe what Dave reported about your recent days of pure hell.  My first thought was of the simple suppository (mum used to carve a wedge out of ivory soap to ease our blocks of cement to the Glory Land) but it seems that on this carefully controlled regimen, one cannot revert to old fashioned methods.  Not to digress, but to digress, John nearly died of croup several times as a young’n.  I remember many nights spent in a bathroom full of steam and, in the worst scenario, trips to the hospital at 90 miles an hour.  Then I heard that my Aunt Patty (mum’s sister), as a child, had croup as well, and once, during a severe bout when she was turning blue, Grampa Tripp dripped 2 drops of kerosene onto a sugar cube and fed it to little Aunt Patty.  It broke up the congestion and she resumed breathing!  This has nothing to do with what you’re going through, but it goes to prove there are times, when all else fails, Old Fashioned methods should not be dismissed.  When one has ingested food for 8 days and nothing is coming through the Glory Land, the troops have to resort to surprising the enemy from the rear.  It has worked in wars through the ages, and you, my Darling, are fighting a war.  I think you need me, my knife, and my ivory soap.

 I love you, mum

 P.S.  I have a whole box of rubber gloves left over from a few years ago…..

Today we returned to Boston to meet with Dr. Shaw, and my liver enzymes are trending down. Better yet, Dr. Shaw got the okay from Novartis for me to continue LDK at a dose of 400 mg once those enzymes have returned to normal– I had been certain I would only be allowed to go back on trial at a lower dose if at all. AND, the CT scan, aside from a new area in my right lung which likely represents infection, was STABLE. In fact, there is a “Slight decrease in ground glass opacity at the lateral left base…”

I really hadn’t expected the wealth of good news today, and in fact figured the focus would be on what therapy we would try next. I am thrilled that I will be allowed to stay on LDK378 longer, and happier still that my scans were stable.

Obviously, there will be no more sips of wine or outlaw margaritas, no more levaquin or NSAID’s. I’m going to focus on eating foods that are beneficial for the liver, and yesterday I had beets for breakfast, lunch and dinner. I’ve got some weight to gain back, and making sure I stay regular is a high priority.

My body sent me some powerful messages last week, and it got my full attention. I’m listening, and will continue to do so.