Tag Archives: Carboplatin and Alimta

Picking up the narrative thread and pace as well…

On Friday, March the 15th, I was back in Boston for my biannual appointment with my ear nose throat doctor. In addition to discussing the virus I hadn’t quite shaken, I brought up the tinnitus and loss of hearing that I had been experiencing ever since the third infusion of carboplatin and alimta. I explained that the symptoms were particularly pronounced on the right side, which did not surprise the ENT, as that ear canal was completely blocked by wax. He asked if I used q-tips and I allowed that yes, I did, but carefully. As expected, I was advised to drop that practice and to simply clean my ears with a tissue (so why do they still sell the damn things?).

Anyway, he carefully scooped away the blockage and what do you know, for the first time in five weeks, I could hear out of my right ear. When I told my tale to Dr. Shaw later in the day she laughed and said she would have to start looking in people’s ears (if you recall, my final dose of carboplatin was reduced yet again due to the combination of low white blood cell count and my hearing loss).

Jemesii joined me for lunch, and afterward I zipped up to the 6th floor for a CT scan. When I finished up there, I headed over to the main hospital, as a buddy of mine had been admitted. I hung out for an hour and then I took my place in rush hour traffic.

Dr. Shaw was good enough to call that evening with the initial read on my CT scan and although nothing had improved from the last session of imaging, it also wasn’t worse. We would stay the course and move on to alimta maintenance.

L1020827Saturday was an even bigger day, as I was going to be in attendance at the annual conference for the Association of Health Care Journalists. Better yet, I would be part of a panel devoted to clinical trials: What you need to know about clinical studies but were afraid to ask. My fellow panelists were Dr. Jeffrey Drazen, editor in chief of The New England Journal of Medicine, Dr. James H. Ware, Frederick Mosteller professor of biostatistics as well as associate dean for clinical and translational science at the Harvard School of Public Health, Ron Winslow, the deputy bureau chief of health and science at The Wall Street Journal, and moderator Scott Hensley, a digital correspondant and editor at NPR.

Speaking in front of a large crowd is something that pushes me way out of my comfort zone, but when asked to do so, I don’t say no. So there you go. Fortunately, I had a few friends in the audience who were pulling for me (Anjali Thomas, John Novack, and Christopher, Melinda and Dr. Kihan Lee). It ended up being an entirely positive experience with a lot of nice feedback and support from the journalists in attendance. Should you like to read a nice write-up about the panel, check out Covering Clinical Trials:  a message for journalists and  critical readers, from Dr. Judy Stone and the Scientific American blog Molecules to Medicine.

At the conclusion of the session, my five friends and I went out for a lovely meal. I was (I know I’ve been saying this a lot lately, but it is in fact a recurring theme) utterly exhausted, but oh so happy too.

Moving slowly and possibly requiring assistance

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.

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.

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.