Category Archives: Treatment

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.

Carrying on

This again

This again

I had my repeat mammogram yesterday. It was my right breast that was in question, and initially seven additional views were taken. Those of you who are of the female persuasion are only too familiar with this procedure, but for the rest of you, here is a precise description of a mammogram copied from womenshealth.gov (italics mine):

“You stand in front of a special x-ray machine. The person who takes the x-rays, called a radiologic technician, places your breasts, one at a time, between an x-ray plate and a plastic plate. These plates are attached to the x-ray machine and compress the breasts to flatten them. This spreads the breast tissue out to obtain a clearer picture. You will feel pressure on your breast for a few seconds. It may cause you some discomfort; you might feel squeezed or pinched. This feeling only lasts for a few seconds, and the flatter your breast, the better the picture.”

Ironically, after coaching you into an awkward position, and then squeezing your breast so hard you think it might just pop, the technician advises you to ‘try to relax’. Yup. Thats the same line repeated at our other annual exam, the pap smear. In both situations, relaxation is simply inconceivable.

After a sufficient amount of squashing I was ushered into a special waiting room while the radiologist reviewed the films. Morning television, a pile of tatty magazines, and, curiously, a large collection of Chicken Soup for the Soul’s. And a reassuring sign that read “We compress because we care.”

Soon I was joined by another woman; a real Chatty Cathy. The first thing out of her mouth was “Do you have breast cancer?” I was momentarily mystified, but then I realized that my lack of hair is a potent signifier. So I told her that no, I had lung cancer. Her next query: “Oh, and it spread to your breast?”. Oh my. After telling her that I hoped not, her final, and I suppose inevitable, question was, “Did you smoke?” I was relieved when my name was called and I was spared from further conversation.

It was but a brief respite, and I was returned to the waiting room after two further (and even flatter) compressions/impressions. Fortunately Chatty Cathy’s nose was buried in a magazine.

When I was fetched again I was led to a far room for ‘privacy’. There was no way this was going to be good news.

Sure enough, The findings were as follows: “Diagnostic views of the right breast including spot magnification views were performed demonstrating a cluster of suspicious looking amorphous calcifications in the right central medial breast. A second grouping of calcifications is noted within the right superior breast. These 2 groupings appear to contain morphologically similar calcifications. The breast tissue is heterogeneously dense, which may obscure detection of small masses. There are no dominant masses seen with the right breast.”

The radiologist explained further that these were ductal microcalcifications and that worst case scenario, she felt they might represent a ductal carcinoma in situ.

Tomorrow I will meet with Dr. Shaw for a scan review (I had a chest CT scan on Monday) and then my third round of chemotherapy. On Friday I will return to the Avon Breast Center at MGH to meet with a breast surgeon and to schedule a biopsy (80% of breast biopsies are not positive for cancer–I’m hoping mine will be one of those).

And just to make things more interesting, this is the regional forecast for Friday:

...A POTENTIAL HISTORIC WINTER STORM AND BLIZZARD IS EXPECTED TO
DROP 1 TO 2 FEET OF SNOW ACROSS MUCH OF THE REGION FRIDAY INTO
SATURDAY...
Never a dull moment…

Some close shaves

Some incredibly high winds blew through the area on Thursday. Upon awakening Friday morning, we discovered that two big pines had fallen and brought a large branch from a maple tree down with them. The whole mess grazed the edge of the house and somehow landed in between the propane tank and the air conditioning unit. A section of the chain link fence was destroyed and one errant branch took out some screens on the porch, but all in all we got lucky. However, David has decided it is time to bite the bullet and pay to have a few more trees removed, as a direct hit would have been devastating.

Friday brought a bit more anxiety, as I got a call back in reference to the mammogram I had on Thursday. I refuse to believe that there is actually an issue, but I will have to go back in on Tuesday for another read.

And then, just before noon I was rushing around to get out the door and rolled my left ankle (the same one which sustained a spiral fracture in 2009) and took a nasty little spill. I limped back inside, iced and elevated, and then decided it was going to be just fine, and I could go run my errand.

It turned out to be a poor decision and by the time I got home I was really hurting. More ice and elevation, but as my discomfort grew, I felt a trip to urgent care might not be a bad idea. However, first I had to help Peter with the last of his application essays. Once the submit button was pushed, David fetched my crutches from the garage and we were off. Three x-rays later it was determined that I’d sprained my ankle and I left with a splint and instructions to check in with my orthopedic surgeon next week—just to make certain that the hardware inside my ankle hasn’t shifted.

And then there’s my head. The chemo cocktail that I am receiving lists hair loss as a potential side effect. At first it seemed as if my follicles might just hang on, but by week two they began to lose their grip. A couple of days ago I came to the conclusion the comb over look had to go. First I snipped off as much as I could with the shears, and then David clean it up with electric clippers. Always a bit of a shock initially, sans hair, but I am actually much more comfortable.

Two bald Linnea's

Two bald Linnea’s

Oh, so much on my mind

But that’s not a very good excuse for keeping it all to myself. Time for an update!

Let’s see; it’s Sunday and I had my second round of chemo on Thursday after getting the okay from the allergist on Wednesday. Basically, the urticaria (hives) were yet such a problem, that it wasn’t possible to do a proper skin patch test—I was simply too reactive. So I was rechallenged orally with decadron (dexamethasone–the steroid) and watched for an hour. I felt my eyes getting a little puffier, but it wasn’t obvious to the allergist and certainly not concerning. And given my description of my symptoms post infusion, he felt I was at a very low risk of being hypersensitive to the carboplatin.

Before bedtime I took my second decadron, a Zyrtec and a Claritan (antihistamines); ditto in the morning. We dropped Peter at school and headed straight to the hospital. I had labs (they looked great) and then it was off to infusion where I was given the usual dose of Alimta but less than half the amount of carboplatin that I’d had four weeks ago, and delivered at half the rate. A nifty little shut off valve was attached to my IV and an extra bag of saline hung just in case. However, the whole event was issue free.

And, hallelujah, I still feel good. No nausea, no obvious additional neuropathy, no facial numbness. Pelvic floor seems to have settled down as well. So, aside from some fatigue, it’s an entirely different situation than it was after the first round. This likely means there will be continued dialogue as to whether it is appropriate to bump my dose of carboplatin up again, but as I have a scan in two weeks, we won’t just be shooting in the dark.

I’m highly encouraged about my physical state and now just have to keep focusing on the mental aspects of this battle. Again, I’m getting there; really working hard on staying positive and hopeful both. Of course, not feeling poorly is a real boon, and I am incredibly grateful that I’ve been able to skip right over the unpleasant side effects this cycle.

What else is on my mind?

We are just winding down with Peter’s applications to private school. Last spring, when I experienced my first liver toxicity, I started to get a little panicky about Peter’s future. Of great concern is the fact that David is often away on business; a situation that has been difficult for me to navigate but which is simply unimaginable if I were to pass away. After a bit of serendipity (being seated next to a bright young thing from Phillips Exeter on a plane ride), I began to research the private schools in the area and decided that this was an option worth exploring.

It’s been a big process and crunch time coincided with my switch-up in therapy. However, in a week and a half the window for admissions will close and we will sit back and see what happens. It is not merely acceptance that is needed; we would require a substantial financial aid package so there are lots of unknowns. However, imagining both the potential opportunities as well as the extensive support system that boarding school could provide for Peter, I am hopeful that this shall become an option.

Also on my mind, the Lance Armstrong confession. I watched both segments and derived no pleasure from the humiliating spectacle. I could, however, relate to at least one claim he made; how it was only after battling cancer that he became a fierce competitor and that this was due in large part to the survive at any cost mentality.

I get that, and the truth is, all sorts of ‘banned substances’ are part of the cancer arsenal. It is possible to see how a line could be crossed.

However, what I will never understand is his willingness to lie, cheat and to destroy the reputations of others. That pervasive flaw can only be attributed to a wanton lack of character and I doubt that he will ever be self aware enough to realize all of the damage that has been done. I will still wear my LIVESTRONG bracelet though and support the charitable aspect of the organization. It is not about the bike, and it is no longer about the man. Originally a slogan cooked up by NIKE in a clever marketing campaign (and co-opted by cancer survivors everywhere), live strong is now about believing in myself.

And one more thing. Please keep my dear friend Thao in your thoughts and prayers. She is at a tough place where options are few and yet she is not ready to stop fighting. What Thao wants is one more chance to get ahead of the cancer. May she get it.

An unforeseen delay in treatment

Wednesday should have been the day of my second infusion. Although I was still experiencing some lingering peripheral neuropathy, I was on the fence about continuing with the carboplatin. The primary reason for my indecision was the fact that I had begun to notice a positive difference in the symptoms of my lung cancer.

As I noted previously, the dexamethasone  significantly reduced the inflammation in my lungs. However, once I’d tapered off the steroids, both my cough and the bronchorrhea returned with a vengeance. And then, starting a week ago, I stopped coughing during the daytime and the production of fluid at night went down by half.

At my appointment with Dr. Shaw prior to infusion, she reiterated that the median progression free survival when alimta was combined with carboplatin for the first four rounds was double that of alimta alone.

Confusing the matter was the fact that aside from the neuropathy in my hands and feet, the issues I had described following my first round of chemotherapy were anything but textbook. As we talked some more, Alice (Dr. Shaw) seemed to feel that the pelvic floor symptoms may have had their origin with the urinary tract infection, but as I spoke again about my facial numbness and difficulty swallowing, she began to wonder if those symptoms might actually represent hypersensitivity to the platinum agent.

After more conversation (and a quick phone call to the allergy department) it was decided that the most prudent course of action would be to schedule a consultation and a patch test prior to any further infusion. Should I prove to be hypersensitive to the platinum agent, there might be the possibility for desensitization; I would be admitted to the hospital for a carefully monitored and very slow infusion. If  the patch test was inconclusive, we would consider a significantly lower dose of carboplatin.

Allergy testing is scheduled for Wednesday with potential infusion the following day. And it would seem I will have a lot to talk about when I see the allergist:  I had taken three dexamethasone in preparation for chemotherapy, and I subsequently developed both an itchy rash and swelling in my cheeks and above my eyes. Allergies to oral steroids are not commonplace, and would be a bit ironic, as the steroids are administered to help stave off an allergic reaction to the chemotherapy agents. And just to keep things interesting, yesterday I developed  a rather uncomfortable case of oral thrush; likely also related to the steroids.

Hopefully we will arrive at an answer to all these questions rather quickly. I am eager to get back on track with treatment.