Category Archives: Treatment

Damage control

I am still experiencing significant peripheral neuropathy. Specifically, decreased sensation in my fingers (such that buttoning my coat is difficult) and my toes as well. Thankfully, my face–nose, tongue, throat, lips, are just about back to normal. However, there is one uncomfortable detail that I have not yet shared:   the muscles of my pelvic floor have gone bonkers:  uncontrolled muscle contractions every few seconds accompanied by burning pain. The level of discomfort verges on extreme and is the sort of thing that, should it continue unabated, could just drive me crazy.

This unpleasant scenario seemed to begin with a urinary tract infection on Christmas eve. I had a previously scheduled appointment with a urologist two days later, and I described the sensation to him. At that time we both felt it was related to the UTI. However, even after the infection cleared, the urethral spasms continued. Before long, the neighboring muscles got on board (yeah, those muscles). I contacted Dr. Shaw and allowed that this might in fact sound crazy, but that it was very, very real. She prescribed neurontin, which has helped dull the burning pain but had no impact on the contractions.

I have looked online but found very little to corroborate my experience. Certainly the fact that I had four rounds of cisplatin and taxotere (both highly neuropathic) in 2005 made me more susceptible to subsequent peripheral neuropathy. And it is not without personal precedence. Platinum has the potential to be the gift that keeps on giving, with progressive symptoms of neuropathy weeks to months after the final infusion. In November of 2005, a little over two months after my final dose of cisplatin, I experienced the very same situation; burning sensations and extreme spasticity–also referred to as hypertonic muscle spasm–in the perineal region. I was so miserable (and freaked out) that I ended up in the emergency room at MGH. There were no findings, other than the fact that I had recently had a urinary tract infection. The discomfort continued for several more weeks and then finally disappeared. At that time, it never occurred to me that my symptoms could represent peripheral neuropathy.

As to why it has affected my pelvic region, I can only suppose that there had been previous injury to the nerves serving that area. I joked with Dr. Shaw that the 10 pound 4 ounce baby might have been a contributing factor. Further research revealed that there are certain risk factors for pelvic floor neuropathy that are associated with childbirth. High birth weight (that big baby was not delivered by cesarean section), forceps delivery (first birth), extended and active second stage (first and third labors).

On Wednesday I have an appointment with Dr. Shaw followed by my second round of chemotherapy. The data  suggesting that progression free survival is longer when Alimta is combined with carboplatin is persuasive. If the neuropathy has cleared up by then, I will consider going with a reduced dose of carboplatin. However, if the pelvic neuropathy continues, I will choose to go with just the Alimta.

Ultimately, I value quality over quantity.

Still standing

turning to ice

turning to ice

A storm two days ago dropped ten inches of snow and it finally looks a proper winter around here. Today I trudged down to the pond; it was better than good to be out of doors.

I almost feel myself again after what can only be described as a rough go; the first cycle of carboplatin and alimta was significantly more difficult than I had anticipated. Of the attendant side effects it is the neuropathy that I continue to find concerning (or unnerving, as I said to Dr. Shaw–in an apt yet unintentional pun).

According to a National Institute of Health webpage: “Peripheral neuropathy describes damage to the peripheral nervous system, the vast communications network that transmits information from the brain and spinal cord (the central nervous system) to every other part of the body.”

Unfortunately, this damage can be both catastrophic and irreversible and it is not always easy to predict the extent of injury. In my case, by day five some of the symptoms had begun to subside; a positive indicator. However, a week and a half after infusion, both my internal tremor and a noticeable lack of sensation (primarily in my feet and hands) has lingered. The question is, will I experience an even greater degree of neuropathy during the second infusion?

The next ten days will be telling. Should my nervous system show signs of healing, I will be somewhat reassured. However, if significant neuropathy remains, I may be reticent to risk further injury.

Weathering

A gale has been battering me, from the inside out; there are moments when I have felt unmoored.

At the time of my last post, I was hopeful that the tide was turning. However, by the following morning, the nausea suddenly seemed inconsequential, as my peripheral neuropathy became more persuasive. Dr. Shaw checked in last night and I expressed my concern; her feeling was that by today (day four) it should begin to abate. When I awakened this morning, it was clear that my symptoms had intensified. My face had begun to lose sensation; by lunch time swallowing seemed to present a challenge.

Because of the steroids, I have been unable to really sleep. Two ambien buys me three hours on the top end, followed by another hour or two patched together. I am exhausted but wired and almost preternaturally aware. I cannot stop trembling. My vision has been effected as well, and I stumble when I walk. Warned that a crushing fatigue will likely follow withdrawal of the steroids, I almost welcome it. To sleep and not to think seems like the best way to weather this storm.

Back to the present with a jolt

Showing a little bit of attitude

Showing a little bit of attitude

I plan to return to Marfa and points beyond as well, but first a quick update:

Tuesday, the day before infusion, I started taking dexamethasone, a steroid designed to stave off an allergic reaction to the chemotherapy agents, and with some additional anti-nausea effects as well. When I went to bed that night, my lungs sounded better than they had in months, and I coughed up very little fluid. It would follow that a good part of bronchorrhea is related to inflammation; it’s a shame steroids come with so many negative side effects. To wit–that night, I had a splitting headache and didn’t sleep a wink. I’m just glad we had agreed that David would drive me into Boston the next morning.

That was yesterday, Wednesday. Having taken the advice of members of my support group, prior to chemo I requested thermal packs to warm up my veins and I drank lots of water as well. After being dosed with zofran and more dexamethasone, infusion began. Alimta was only 10 minutes, and then another 50 for the carboplatin. Of course, that 60 minutes can stretch into many hours, what with waiting for lab results and the pharmacy to mix my personal cocktail.

L1020614I should add that I dressed for the occasion. First, the ironic but somehow very appropriate t-shirt shown above. My diamond earrings, to go with the platinum that would be coursing through my veins (my idea of a funny). And a lucky charm; some years back Jemesii  cast an actual piece of Lucky Charms cereal in silver, and it has become a cheeky and cherished amulet.

Heavy metal time

Heavy metal time

We left the hospital around 3 pm and I was feeling a little bit loopy but still pretty chipper. I took a couple of ambien prior to bed and logged at least six hours of good sleep. This morning I had two more steroids as well as some zofran and sent out an email to my family and a few friends to say that aside from a somewhat leaden (make that platinum) feeling in my limbs, I seemed to be tolerating the treatment. However, I believe I crossed my t’s and dotted my i’s a bit too soon.

An hour after lunch, I got hit with my first wave of nausea. I popped a compazine to little effect. After an hour I took two more zofran. Fortunately I never vomited, but was caught off guard—I’d not expected to be so nauseated on my first course (the side effects of chemo tend to be cumulative). The headache returned and I gravitated between chills and sweats; fortunately no correlating fever. My tongue felt swollen and I became cognizant of peripheral neuropathy (tingling and numbness–in addition to the relatively mild neuropathy which has been a lingering side effect of cisplatin/taxotere) in both my hands and feet. This ride was becoming bumpy.

However, I am happy to report that I feel somewhat better tonight. Also, I am greatly cheered by the phone call I received from Dr. Shaw:  the gene sequencing is a go.

Onward. Let’s just hope that the cancer’s butt is being kicked too.

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.

Power on

My every-six-week chest CT scan in Boston was scheduled for 2 pm on Monday, the day Sandy was coming ashore. As luck would have it, the MBTA  had announced that they would be shutting down at exactly the same time, and many of the hospital staff rely on public transportation. So I gambled on going in early, which turned out to be a very good thing. Yawkey was running on a skeleton crew, but many patients had also cancelled, so I was able to get my scan and be on the road again by about 1:30 pm. The storm was really starting to pick up as I headed north and there were a few dicey moments when the wind would come blasting over a ridge and hit my car with enough force to shove the vehicle sideways.

I made it safely home shortly before three. David was baking cookies (for cheer and courage in the days to come). Generator, candles and bottled water at the ready, we watched the weather channel as the storm howled outside. After flickering on and off for hours, our lights went out for good at 7 pm.

In anticipation of the storm, school had been cancelled on Monday and remained closed on Tuesday. That afternoon Peter and I needed to go back to Boston, as he had an appointment in the city. There was little traffic, but otherwise no apparent ill effects from Sandy. We enjoyed a warm meal and after checking on the status of the power at home (still out), camped out at a Starbucks for several hours so that Pete could work on homework.

Wednesday brought lower temperatures and a return to school for Peter but still no power. Our small (and noisy!) generator took turns heating the aquariums and cooling the fridge, but the lack of heat and running water were becoming more problematic. Peter and I decided to spend Wednesday night at the Comfort Inn. David came over for a shower, but returned home to tend the generator (as well as the dog and aquatic life!).

After dropping Peter off at school on Thursday morning, I returned to the hotel for a nap and then after check out, stopped in yet another Starbucks to suck up some wifi (and suck down a mocha while I was at it). At 2pm I got the call I had been waiting for:  power on!

On the outer edges of Sandy’s reach, we experienced only a few days of inconvenience; temporarily deprived of creature comforts that we have come to take for granted.

My heart goes out to those for whom the storm’s impact has been far greater.

Not your average cupcake.

Marguerite’s famous cupcakes

First, thank you all for the messages of support; whether is was a comment here, on facebook, or a private message, they are all so very appreciated.

What a week! I’ve not written sooner as there has simply been no time. In anticipation of an upcoming biopsy and perhaps the start of a new clinical trial, I had left my days rather open. Well, nature abhors a vacuum and once we got the good news, my calendar filled up fast. David had a business trip planned to France that had been put on hold, but it too rematerialized, and he has been out of the country for seven days now. There has been a good deal of general scrambling this week; on more than one occasion, I’ve driven Peter to school still dressed in my pajamas.

I may struggle to keep my own house in order, but at my home away from home, The Yawkey Center at MGH, calm prevails.

The level of care I receive is extraordinary. When I walk up to the desk in 7B, I am greeted warmly and by name (as are all the other patients). The trio of phlebotomists are cheerful and exceedingly competent and getting blood drawn is drama free. Generally I recognize a patient or two, and on this past Monday my friend Christian and I had some time to socialize before being called in for our respective appointments.

When first led to my private room, I am weighed, my temperature is taken and my oxygen saturation and blood pressure are measured. On Monday I was just making myself comfortable when Marguerite came in, bearing a dozen red velvet cupcakes. For ME.

I met Marguerite four years ago, on October 1st of 2008. It was the day that I was first dosed with PF-02341066; now known as Xalkori. Marguerite was the phase I Research Nurse and she quickly became my go to person for support. I jokingly called her Mother Superior; she was so obviously in charge and yet also entirely accessible. Recently she transferred from phase I to the thoracic unit, which means I will be seeing her much more frequently. I couldn’t be happier; I adore Marguerite. And the cupcakes? Just the icing on the cake.

When Alice (Dr. Shaw) came in, we went over the scans side by side with the images from six weeks prior. Clearly, the cancer covers exactly the same area as before. No better, no worse. However, to my eye there appeared to be areas of less consolidation in the current image. Alice cautiously concurred, although our observations are not supported by the radiologist’s support. Encouraged, I resolved to shoot for the moon and hope for more resolution on my next scan.

We then discussed the congestion in my lungs, which is again becoming more problematic (it seemed to clear up somewhat after the course of antibiotics for the UTI). It is a relief that my symptoms do not seem to correlate with progression of the cancer, but it is also a bit confusing. I wondered if it were possible that anatomical changes might a contributing factor and Alice said that it is certainly possible; scarring in my lungs could in fact lead to a decrease in function. We decided that daily use of a nebulizer might help.

As Alice listened to my chest, I showed her the middle toe on my left foot, which I had stubbed rather badly the day before. After she left, my scheduler Mike came in and I exchanged my dosing diary and old bottles of drug for new, before grabbing a quick lunch with Christian and then heading north to pick Peter up at school.

By the following morning, the appearance of my stubbed toe had changed dramatically; an angry throbbing red, I felt pretty certain it was becoming infected. Peter had an interview at Exeter that afternoon, and I was unable to get into my GP in the window of time I had before I needed to pick him up at school. So I called Alice. We agreed that I should go to urgent care after Peter’s appointment and that the attending physician would call her before prescribing an antibiotic. “But Alice”, I said, “I won’t be able to get there until at least six and it will be after hours for you.” Her response? “So?”

In short, I was diagnosed with mild cellulitis. Alice was called and an antibiotic prescribed. It was after dark when Peter and I got home and there, sitting on our doorstep, was a box containing a nebulizer. No prescription to fill, no discussions surrounding insurance, no arrangements to make. All the hard work had been done for me, and now all I had to do was plug it in.

Extraordinary.