Category Archives: Treatment

But I know more details would be helpful…

My beautiful daughter on a particularly fateful day.

My beautiful daughter on a particularly fateful day.

Is there some fresh way of saying ‘It’s been a challenging time?”

No, probably not. And besides, challenging is a euphemism; a gentled version of what I wish to convey.

It’s been a difficult year, and the year before that as well. Adjusting to life alone, the continued progression of my lung cancer, a short stint on Xalkori, and then at long last admittance to the PF-06463922 trial. But it has not been without wonder.

About that trial…

I went in with low expectations, as my second secondary acquired mutation (G1202R) is highly resistant to all ALK inhibitors, although results in the lab indicated that my cancer could still respond at higher doses. I entered in the third cohort, at a dose of 75 mg. I was delighted when my cough began to abate almost immediately. But then four days after regular dosing started, I began to experience marked shortness of breath and the sensation that something was caught in my windpipe. I was coughing a lot and some of it was streaked with blood. The following morning there was a small clot of blood in my sputum, but my shortness of breath had abated. However, upon awakening the next day I coughed up yet another small clot. Hemoptysis is one of those things you just can’t ignore, so I sent a text message to Dr. Shaw, who was away at ASCO.

While waiting for a response, I received the phone call from my stepfather Jim telling me that my mother had passed away.

And that phone call was followed by one from a member of the clinical trial team, telling me that I’d been scheduled for an urgent CT scan, in order to rule out a blood clot or pulmonary embolism.

Fortunately my daughter Jemesii had the day off and pretty much insisted on meeting me at the hospital. I was going on adrenalin at this point and don’t know what I would have done without her. In prep I blew two IV’s for contrast (these veins are getting tired) and ended up having a vasovagal response (never happens to me) so I earned some time out in the recliner with some intravenous saline. And then after the scan wrapped up Jemesii and I headed over to the Termeer Center for the results.

And this is when things got really weird. The attending physician said I had neither an embolism or a clot. “How about cancer?” I asked. “Is that all gone?”

“Well, no…but…” she said, and then read from the report:

Lungs and Airways: Status post left lower lobectomy. A mixed
attenuation lesion in the lower portion of the remaining left upper
lung is significantly smaller than on the prior exam now measuring 2
cm x 1 cm x 3.2 cm significantly smaller than on the prior exam where
it measured approximately 8 x 7 cm in diameter. A small right upper
lobe mixed attenuation lesion (series 4, image 330) measures 6 x 7 mm
minimally decreased from prior measurement of 7 x 9 mm. 4 mm region
in the left upper lobe seen on series 4, image 339 is not
significantly changed. A nodule in the right upper lobe seen on
current examination (series 4, image 314) and on prior examination
on 66, image 155 now measures 4 mm in diameter down from 6 mm. And
unchanged region of atelectasis is present in the left upper lung
near the left hemidiaphragm. Additional nodules. Similar in size to
prior exam. No new nodules are seen. There is no evidence of new
pneumonia or pulmonary edema.

I had begun regular dosing six days prior and an 8 x 7 cm chunk of tumor had melted away to a mere shadow of itself. It was just unbelievable.

Stunned, Jemesii and I decided that a good meal and an even better glass of wine was in order. We raised a toast in honor of my mom. And then we raised another to the future.

Finding myself again

I don’t believe I understood how badly I needed this break from chemotherapy. Five straight years of treatment:  I cannot overlook the fact that it represents an enormous luxury for someone with advanced cancer—in terms of options and continuing survival. However, all the positives aside, five years is a hell of a long time to not feel normal.

As my energy levels rise and my head clears, I am embracing this moment to rediscover me. To quote one of my favorite poets, Wallace Stevens (from Tea at the Palaz of Hoon):

I was the world in which I walked, and what I saw

Or heard or felt came not but from myself;
And there I found myself more truly and more strange.

A bit adolescent, this new self indulgence; perhaps that is why I feel so rejuvenated. And I am trying to make the most of this opportunity. I’ve been weaning myself off of ativan, and am already eyeing the medicine cabinet to see what can go next. My eating habits have changed as well—daily salads and smoothies (my GI tract is showing its approval by cooperating). Long walks and laps in the pool; sixty lengths yesterday, it will be sixty five today.

Having a ball

Having a ball

Getting tired of this crap

I had a CT scan on Monday and my review with Dr. Shaw yesterday. It was also to be my ninth round of alimta (four of carboplatin/alimta, followed by maintenance of alimta every three weeks). However, at my last infusion, I told Jen Logan, Dr. Shaw’s wonderful nurse practitioner–that I was ready for a break.

Except for washout periods and brief drug holidays due to extenuating circumstances (liver toxicity and surgery)—I have been in treatment for five straight years now. That’s a long time. And although my current regimen is tolerable, it still comes with a laundry list of possible side effects. To wit, copied from Drugs.com:

Alimta Side Effects

“Check with your doctor or nurse immediately if any of the following side effects occur:

More common

  • Black, tarry stools
  • bleeding gums
  • chest pain
  • chills
  • cough
  • fever
  • loss of coordination
  • lower back or side pain
  • painful or difficult urination
  • pains in the chest, groin, or legs, especially calves of the legs
  • pale skin
  • pinpoint red spots on the skin
  • severe headaches of sudden onset
  • shortness of breath
  • sore throat
  • sudden onset of slurred speech
  • sudden vision changes
  • swollen glands
  • troubled breathing
  • ulcers, sores, or white spots in the mouth
  • unusual bleeding or bruising
  • unusual tiredness or weakness

Less common

  • Bloody urine or bloody stools
  • decreased frequency or amount of urine
  • fainting or loss of consciousness
  • fast or irregular breathing
  • increased blood pressure
  • increased thirst
  • itching
  • loss of appetite
  • nausea
  • skin rash
  • swelling of the eyes or eyelids
  • swelling of the face, fingers, or lower legs
  • tightness in the chest or wheezing
  • vomiting
  • weight gain

Incidence not known

  • Blistering, peeling, or loosening of the skin
  • joint or muscle pain
  • pain and redness of the skin in the area of earlier radiation treatment
  • red skin lesions, often with a purple center
  • red, irritated eyes
  • stomach cramps, tenderness, or pain
  • watery diarrhea

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health careprofessional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common

  • Burning, tingling, numbness, or pain in the hands, arms, feet, or legs
  • confusion
  • cough or hoarseness
  • decreased urination
  • diarrhea
  • difficulty having a bowel movement (stool)
  • difficulty with moving
  • difficulty with swallowing
  • discouragement
  • dizziness
  • dry mouth
  • feeling sad or empty
  • hair loss
  • headache
  • heartburn
  • increase in heart rate
  • irritability
  • lightheadedness
  • loss of interest or pleasure
  • mood changes
  • muscle aches or cramping
  • muscle stiffness
  • pain or burning in the throat
  • pain produced by swallowing
  • rapid breathing
  • sensation of pins and needles
  • stabbing pain
  • stuffy or runny nose
  • sunken eyes
  • swelling
  • swelling or inflammation of the mouth
  • swollen joints
  • thinning of the hair
  • thirst
  • tiredness
  • trouble concentrating
  • trouble sleeping
  • weight loss
  • wheezing
  • wrinkled skin

Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.”

Not much fun, huh? I’ve personally experienced nausea, diarrhea, constipation. Rather stunning fatigue that lasts for almost two weeks each infusion. Sores in my mouth and other places I’d rather not mention. Creased and dimpled nails on my fingers and toes, hair loss (it is coming in thick on the crown of my head, but is yet sparse everywhere else), and a tongue that feels as if it is scalded. Rheumy, reddened eyes and rapid recession of my gums. Dry mouth, puffy eyes, and wheezing. Bloody nose and sloughing/flaking skin. And although I hoped I might bypass cognitive deficits, it is clear my short term memory is rather shot.

Fortunately, my latest scan showed stability and Dr. Shaw was onboard for at least a short break. I will see her again in a month and we will reassess. In the meantime, I look forward to a steroid/alimta/treatment-free summer. However, before I can truly enjoy myself, I need to resolve a stubborn case of constipation. Thus far an unholy mixture of water, fiber, prune juice, senna, colace, lactulose, glycerin suppositories and even a fleet enema have made but a dent in my problem.

I really just want to be a regular person.

One hot mess

Time to make some excuses. It was my intent to have part two of my trip to Utah up days ago. My infusion on Thursday was without incident, and on Friday I checked off the items on a fairly ambitious day-after-chemo list. However, I also cut way back on the dexamethasone (steroid) this time:  two, two, one, none—or, over and out by Friday afternoon. Of course, by Saturday I crashed, and the sudden heat wave simply contributed to an overwhelming sense of torpor. All volition vanished, and I focused what little attention I could muster on replenishing my fluids and following the plot line of The Cloud Atlas (what a long and ridiculous movie). Staying hydrated proved easier than comprehension, and when dinner presented additional challenge—chew, swallow, think, repeat!—I began to wonder if I might have backed off the steroid a little too quickly.

I slept quite soundly Saturday night; for almost twelve straight hours. Of course, that is the upside of my decision to cut back on the dexamethasone. The oppressive heat was a little softer yesterday—the heavy air pushed around by gusts of wind. A glass of iced coconut water in hand, I spent much of the day anchored to the couch directly in front of the blast from an industrial sized fan.

Almost as clean as a newborn baby

Almost as clean as a newborn baby

In the meantime, David has been opening the pool for the season. When he peeled back the heavy green cover on Friday, twelve frogs in various states of decay decoupaged the bottom. A dead amphibian—or even a mouse or vole, is not uncommon as we proceed through the summer, but twelve at once was a new (and somewhat distressing) record. It was going to be necessary to drain two thirds of the water in order to change the bulb in the pool fixture and to redo some caulking. I was in favor of flushing out all of what I now felt to be a bacterial broth, but David was sure that ‘shocking’ the pool would be sufficient (for Centers for Disease Control and Prevention guidelines on what to do when you find a dead animal in your pool, click here. And pay special attention to any raccoons that may have fallen in and drowned while washing their dinner.).

Well, David finally came around to my way of thinking, which was generous of him as he would be doing all of the work this time around. And what a job it has been. Or, as he says, “this is how much I love you”. Which is, I feel, beside the point—and my rather pathetic line anyway. Just ask Pete. When I pulled up to school on Friday and handed him an icy drink from Starbucks, I repeated a version of the same line. Different context, same underlying plea:  I hope you notice the effort I am making on your behalf.

And I do, I really do.

It rained last night and the air has cooled. With the help of an ambien, I enjoyed a second night of sound sleep, troubled only by dreams of a headmaster who would not let me out of the bathtub to attend recess. A little hungover from the ambien, I’ve got one nap under my belt already this morning—it is now time for a second cup of coffee. By this afternoon, I should be ready to tackle Vegas.

Scan report: 4/29/2013

I’m delighted to write that I have not posted a blog simply because I have been too busy living my life. Over the next few days I hope to rectify the lack of communication by playing catch-up. I may as well start with my last scan—being presented here in unadulterated fashion. Couple of notes; for the uninitiated, ground glass refers to patchy or lace-like areas which represent some form of inflammation and/or cancer. We always hope for the former, but in my case, it is likely the latter. Also, the pericardial effusion is not actually new—but rather has been noted for some time, as has the pleural effusion:  no biggie.

linnea radiology 4:13001As for what this all means; in short I continue to have progression. Not marked, but Dr. Shaw felt ‘little significant change’ was not quite adequate either. However, as I am tolerating the alimta and feel pretty well overall followed by one week of feeling just about fabulous, there is no discussion about changing up therapies yet.

Also noted at my appointment was the fact that I have gained fifteen pounds in four months. I was pretty skinny coming into chemotherapy, so this is a good thing. However, at least some of the weight is due to steroids, and therefore not evenly distributed. I’ve got a bit of moon face going on, and my fingers and toes are sorta chubby—merely enhancing my resemblance to a big baby (more about that later).

Routine and then some

Kinetic sculpture by Arthur Ganson at the MIT Museum

Kinetic sculpture by Arthur Ganson at the MIT Museum

When I wake up in the morning I wiggle my toes and then repeat “I’m alive” three times. Then I do a little yoga stretch before I swing my legs over the side of the bed. I pee (doesn’t everybody when they first get up?), mosey on down the hall to the kitchen to get the kettle started for coffee, turn the light on Pete’s aquarium and let our golden retriever Buddy out for his first pee of the day. Joining him outside, I pick the newspaper up from the end of the driveway and gently place it in his mouth. Buddy thens trot back into the house (rather proudly), and drops the paper in the proximity of his food bowl, a not so subtle hint.

Today, as I walked down the driveway I heard one of my favorite sounds:  the call of the wood thrush. My heart soared. On that note, I think it is time for a personal update:  as a good friend pointedly noted, inquiring minds would like to know.

My emotional challenges hardly need delineating. But joy continues to burst through, as sudden and unpredictable as bird song. Sometimes I am actually outrageously happy; full of energy and plans. My stamina and lack thereof do follow a pretty set schedule though. For a day or two following chemo, (and because of the steroids) I fly pretty high. But when I come down, it is precipitous; the sense of fatigue profound.

There are other unpleasant side effects that also set in about day three. I cough a good deal and it feels as if there is a band tightening around my chest (what one friend in my club calls the alimta squeeze). Incessantly watering eyes, scaling skin, and nose bleeds are part of the mix.  My other mucus membranes (all of them) become quite irritated, resulting in diarrhea and mouth sores.

By the second week, I am feeling marginally better on all counts.

Week three—I feel pretty damn good. Then it’s time to do it all over again; I have a scan review tomorrow followed by infusion. I had that scan on Monday, and while in Boston, went on a little outing. My friend Ginger, who is a double digit survivor of lung cancer but now battling a new, unrelated cancer, made arrangements for the two of us to go to lunch at Flour and then to the MIT Museum in Cambridge.

We had a fine old time, and asked a member of the staff to take a commemorative picture of the two of us, in which, Ginger appears to be a mini me. We’re sporting exactly the same hairstyle at the moment, although she is far less gray. Our smiles are quite similar. However, although Ginger never thinks of herself as petite, either she is, or I am very large. Like I said, a mini me. So where’s the photo?

Well, it wasn’t very flattering; just didn’t capture our inner beauty—I think it might have been the lighting. So, we’ll just have to take another one the next time we are together. Promise.

The devil is in the details

It has been a long winter, but the last of the snow is melting rapidly. In New Hampshire, we are just beginning mud season.

L1020809There have been other harbingers of spring, starting several weeks ago with the silver spigots and buckets of maple sugaring. One of our neighbors has been collecting sap and hauling it down to what looks like some crazy distillery in the woods, complete with a wood frame covered in tyvek, a trash barrel full of empties (miller lite) and a blaring boom box. Just about 24/7, he and his cronies have been evaporating down three giant pans of sap over a wood fire. It’s a labor of love, maple syrup, with a forty to one working ratio (sap to syrup).

However, my neighbor, who has a creative approach to life in general (I speak euphemistically), has found his own way to ‘stretch’ the product. A few days ago, trying to walk off the effects of my fifth infusion, I wandered on down to the maple syrup factory. My neighbor’s cousin was manning the pans, and I asked him if the massive pot of clear liquid on the ground was virgin sap. Nope, he said—It’s olive oil. After I wondered what on earth they used olive oil for, he looked me in the eyes (I’m making that part up—he specifically did not look me in the eyes) and said “It’s hard to make that much syrup.” And then I understood. They were cutting the maple syrup with olive oil.

The moral of this part of the story is: if you’re in New Hampshire and a guy named Ray asks you if you’d like to buy some maple syrup, just say no. Firmly.

Speaking of details, prior to my infusion of alimta a week ago, I got the hard copy of my recent radiology report:

Persistent bilateral multifocal solid and groundglass opacities without significant interval change to 2/4/2013.”

There’s not a damn thing I like about the first seven words, which in plain english simply mean that there is yet cancer scattered throughout both of my lungs. However, at this stage of the game, one focuses on the second half of the sentence: without significant interval change. In two weeks, I will have my second maintenance infusion of alimta, followed by another CT scan, and then a reassessment of the situation. 

In the meantime, I’ve finally kicked the virus and am feeling stronger again. Today I took a rake to the gardens for an hour and also went on a walk. I’m now exhausted but in the good sort of way that comes from physical exertion; I shall sleep soundly tonight.

Moving slowly and possibly requiring assistance

Minder
A minder is a person assigned to guide or escort a visitor, or to provide protection to somebody, or to otherwise assist or take care of something, i.e. a person who “minds”. Wikipedia

I am no longer the perpetual motion machine of yore; my fourth and final round of carboplatin and alimta left me fatigued and with a profound lack of energy that I just can’t seem to shake. In two days I undergo maintenance infusion of alimta, and the hope is that it will be significantly easier minus the platinum.

The virus I have been fighting is beginning to take leave, but slowly; it is clearly one persistent bug. And, although I was pleased when I started chemotherapy that I did not immediately descend into a fog of confusion (as I had with cisplatin and taxotere) I can no longer deny that there has been a cognitive hit as well. I was once a bit sharper. To wit, today I put the kettle on to boil some water for tea, and then lay down for a nap. Fortunately David came downstairs in the nick of time, but I’m becoming somewhat of a menace.

So please, if you have emailed, written or called and I have not responded, understand that I may have simply forgotten. Yesterday Peter was streaming some music and I asked him for the name of the group. After he shared with me both song and artist I said “Got it” to which he responded (without a moment’s hesitation) “Yeah, right.” And he was—I retained neither.

Four down

It has been a whirlwind week. Peter got home late Sunday night after nine days in Florida for winter break (thank you Migliozzi family!). He swam in the ocean, fished, tasted fried alligator and had a blast at Busch Gardens on the roller coasters, including this crazy looper de looper, Montu.

I’ve spent the past few days surfing the couch, as chemo number four was on Friday. More about that in a minute. But first the fun leading up to infusion.

David left for a business trip on Tuesday morning. Realizing I would be alone the first night after chemotherapy and feeling kind of sorry for myself, I called Melinda, who immediately volunteered to come up for a sleepover. And then on Wednesday my sister Bink flew in for a short visit. We zipped over to yoga class only to discover that it had been cancelled due to inclement weather (it was kind of slippery out). No mind. We enjoyed a nice dinner out and then came home and watched the new James Bond movie, Skyfall. I miss the days when family was just around the corner!

tnThursday morning we were on the road for Boston by 6:30 am. Due to the fact that the pharmacy in the Yawkey building is being remodeled, infusion would be a two day affair. Day one was labwork and an appointment with Dr. Shaw. I had emailed her earlier tn-1about the fact that I have been experiencing both tinnitus and decreased hearing since the last infusion. Unfortunately, ototoxicity from platinum chemotherapy can potentially be irreversible, (again, I am at greater risk for side effects given my four tn-2prior infusions of cisplatin) and in addition my white blood cell count was depressed (leukopenia), so Dr. Shaw advised returning to a lower dose of carboplatin. That was fine with me. Bink and I had the rest of the day off, so Jemesii met us at MGH and we took a short ride on the T for a yummy lunch at Flour. Then we picked up my car and headed over to the Hilton in Boston’s Back Bay. I mentioned in a previous post the largesse of a good friend who has donated some of his Hilton points so that I would not have to make the drive back and forth when appointments doubled up. This is the first time I had taken advantage of his generous offer, and the fact that Bink was along made it into a night out on the town.

L1020792First though, an afternoon on Newbury Street, where we worked our way up the retail food chain (primarily window shopping). Last stop was the Barney’s in Copley Plaza, which for all intents and purposes may as well be a museum.We also enjoyed a meal in Legal Seafood, and after bidding adieu to Jemesii, retired gratefully to our room with the view on the top floor of the Hilton.

The next morning Binky treated me to room service breakfast in bed (a first for me!) and then it was time to head back to the Yawkey Building for infusion. There was a wee bit of confusion as to whether or not I should have dosed prophylactically with antihistamines, so just to be on the safe side we delayed a bit while Bink ran to CVS for some Zyrtec. No more drama until the very end when the vein with the IV suddenly became quite red and painful—what the chemo nurse referred to as a ‘flare‘ reaction. Fortunately it settled down rather quickly after the IV was removed. Bink and I had a quick lunch from Whole Foods and then, all too soon, it was time to drop her at the airport in Manchester.

I made one more stop—for prescriptions, three magazines, and two cans of tuna. I had just settled into my surfing position on the couch when Melinda showed up. Tuna sandwiches, lots of chatter and some fine companionship made the night fly by, and Melinda hung around until David got home at noon on Saturday.

After that, I started to crash a bit—the fatigue this time around has been rather stunning. It seems to grab you around the shoulders and just pulls down hard; frankly, resistance seems futile. Plus, by Sunday afternoon it was clear that the virus I’d picked up from Peter earlier in the week had settled into my chest and was now an infection. I emailed Dr. Shaw and then thought better of it—perhaps this warranted a phone call. Thankfully, she picked up and a prescription for Azythromycin was called into the 24 hour pharmacy.

Today I am feeling somewhat better—it will all be up from here.

Hits and misses

From the inside looking out this morning

From the inside looking out Saturday morning

The blizzard rolled in right on schedule Friday, but fortunately, we were graced with a big dump of snow but never lost power; nature in all its glory is sometimes best appreciated from a snug environ.

I had my third infusion of pemetrexed/carboplatin on Thursday. As the last round turned out to be so manageable, we decided to ramp up the platinum a bit, and for the first 48 hours, I felt pretty good. However, yesterday I skipped my afternoon zofran and began ramping down on the dexamethasone as well. By early evening I was seriously nauseous, and experiencing some pretty intense heartburn and a headache. I took a compazine, and when that had no effect, added zofran and dexamethasone. Soon I was feeling better again–I can’t begin to imagine how difficult chemotherapy must have been before the advent of steroids and antiemitics. Thanks to an ambien, I was able to sleep, and hopefully today I can again back off on medication.

So—lots to share. I think I’ll start with the visit to the Avon Breast Center at MGH. After the concerning mammogram on Tuesday, a sterotactic biopsy was scheduled locally. However, I immediately contacted Dr. Shaw and asked about having a consult at MGH instead; if the situation required treatment, it only made sense to coordinate my care right from the start.

Well, the magical Dr. Shaw got me an appointment on Friday afternoon. Because of the impending storm, it needed to be cancelled, but they were able to squeeze me in Friday morning instead. Once there, I met with the surgeon, who performed an exam and immediately found a lump (that had been missed previously) in my left breast as well. And then I had some more mammograms done, this time using a 3D imaging machine. After a short wait, more close-ups on my right breast, and then an ultrasound of my left breast.

The conclusion: likely benign fibrocystic changes in the left breast and a 99.5% chance that the microcalcifications in the right breast represent non cancerous changes. So I won’t need to undergo a biopsy and instead will have a repeat mammogram at the Avon Breast Center in six months. The moral of this story would seem to be, whenever possible, (and particularly when your medical history is complicated), get yourself to a center with the best diagnostic apparatus available as well as the expertise to interpret those results.

So that was great, great news. A good thing too, as my scan prior to chemo on Wednesday was not quite as encouraging:  “Mixed treatment response with interval decreased groundglass opacity in the left lower lobe, though slightly increased let lower lobe consolidation and slightly increased mixed solid ground/glass opacities in the right upper lobe.

In addition, the results of the initial genetic sequencing of the ALK mutation are in (it remains to be seen if full genetic sequencing can be performed, as my biopsy  sample was quite small and will require a cell line to be grown in the lab—something that may or may not be possible). The secondary mutation that showed up post crizotinib (S1206Y) is nowhere to be seen. In its place is G1202A, also a missense mutation on the solvent front, but unfortunately one which confers a good deal of resistance to all ALK inhibitors. This will potentially limit treatment options, and the mixed treatment response may necessitate a change of course sooner rather than later.

I am focusing on the fact that except for the few days post chemo, I am stronger than I have been in months. In fact, although I still have a small amount of wheezing and an occasional cough, the copious amount of  nighttime sputum has disappeared. Hopefully the resolution of this troubling side effect correlates with the positive response. However, given the mixed response, I do wonder if there is a chance that the resolving groundglass opacity might have been an inflammatory response to the LDK378 (pneumonitis has been observed as a rare side effect in patients treated with crizotinib).

At any rate, there is no way to know and the important thing now is that I am feeling better. One more round of pemetrexed and carboplatin and then, unless a subsequent scans reveals significant progression, I will go on pemetrexed (Alimta) maintenance. One round, one week, one day at a time.