Moving right along

I just returned from a visit with my oncologist to discuss the results of my most recent PET scan. As expected, the news continues to be excellent; my health with regard to this insidious cancer continues to improve. As on the previous scan, there are no metabolic hot spots, no activity in my lungs to indicate that cancer is growing or spreading. The largest of the remaining tumors has shrunk further, from 1.2 mm to 0.9 mm. Many of the smaller ones are gone altogether. The drugs are doing their dirty work and my body is flushing the detritus!

The radiologist’s report noted a pattern of “ground glass” in my lungs. This is nothing to worry about, according to my doctor. A mild lung inflammation that accounts for the intermittent fevers, limited stamina, and flagging energy I’ve had over the past couple of weeks. It could be from the drugs, or possibly something inhaled. She assured me there’s no possibility it’s cancer, but of course, I had to ask. She gave me a prescription to address it.

I’m on schedule to start a third treatment cycle next week. After that, my doctor’s cautious approach dictates that we add on a fourth round “for good measure.” This is not fun, but it’s the safe way to go, so I’m all for it.

Off the pump

Chemo. The word alone is frightening. “So-and-so is on chemotherapy.” This used to easily invoke images for me of faceless techs in darkened rooms administering painful injections of searing drugs; patients retching for hours on end. Maybe that’s a little dramatic. But surely, it must be a sad and somber event.

Today was my second in-office infusion day, and I’m here to report… there could be worse. Every individual has their own experience, of course, and the point on the timeline contributes to one's current reaction; it's said to be cumulative. But today again, my visit to the infusion floor was pretty relaxing.

The medical staff is kind, empathetic, warm, and helpful. My “infusion nurse” is the same every time I go in. There’s comfort in consistency, and she’s a delightful person, to boot. She grimaced in reflected pain when she saw how irritated my sensitive skin is from the bandages holding the IV tubes in place. She administered my dose of Abraxane, drew blood many times, joked and schmoozed, and sent me home. I look forward to seeing her next time, even if it does mean she'll hook me back up to the pump.

I brought along special friends: my computer and cell phone, so I was able to get some work done and feel connected to my life. I dozed in my reclining chair, ate lunch, walked around when I needed to stretch.

I still don’t know what to expect of this journey. I asked my doctor a lot of questions this morning, before getting started. It’s a fine line to walk. I want to gather enough information to feel some control, but not speculate so much I get lost in “what-if” circles.

I asked about the side effects I experienced last week: headaches, fever, migraine aura – all expected results in this study. There’s no reason to believe the dog tick I found on the back of my leg last weekend contributed any measurable ill effects, but we'll watch for unusual symptoms from that too.

“What will you look for when I go off the meds and get scanned?” I asked.

“After the first cycle, we’re happy if the tumors remain stable from the last scans. If they’ve grown in size and number, we’ll rethink the plan we’re on. If they get smaller, that’s a terrific sign, but even if they haven’t changed at all, we’re encouraged.”

“Okay… chances are good then we’ll do a second cycle,” I speculate hopefully, “but what determines if you do a third, or a fourth?”

“We’ll continue as long as we see improvement; even a plateau.”

“I thought there was a ceiling of four cycles in the trial. Do you ever do more?”

“Yes. The protocol initially called for four cycles. But when we see continuing improvement, we continue the treatment. We’re looking to change the protocol to spell this out.”

So this is what research is all about: Set goals, and when the results come rolling in, change the parameters to achieve higher and higher goals.

When I first met my oncologist five years ago, she told me she hated melanoma. It’s personal with her, a vendetta. She hopes to find a cure, and she works very hard at it. She works for one of the top medical centers in the world, in a city full of world-class medical treatment. It’s not a race to see who gets to the top of the mountain first; she collaborates with the other top centers. NYU, Sloan Kettering, Columbia-Presbyterian – they all remain connected and aware of each other’s research. Her ethics dictate that if there were a better program somewhere else, she’d send me there.

Over the years I’ve seen her look weary many times. Melanoma takes its toll even on those who don’t have it! Just as my elephant can run me over in an instant, she sees patients all day long, each never far from their own elephant. She’s constantly dodging pachyderms, and I’m sure it’s exhausting!

When I first met her, I was so impressed with her dedication. My clinical trial is not her only research. She’s exploring vaccines also. Something stirred deep inside me, a desire to help her achieve her goal. Maybe that’s part of why I’m here….

Really good news

It’s Monday night and I’m breathing a huge sigh of relief. I’ve got a course of action, a positive direction. My life holds promise again!

My 2 o’clock appointment with the oncologist stretched out to nearly 6pm. Followed by a celebratory dinner with my sister.

First came results of yesterday’s PET scan indicating confinement of malignant cells to my lungs. There are about ten tiny bilateral nodules, consistent with the findings of last month’s pulmonary biopsy. Surgery is not an option in this case. The target is too small and too scattered. Apart from the invasive nature of surgery, there’d be no guarantee of getting them all, or that more wouldn’t replace them.

What options are there then? There’s chemotherapy. The rate of improvement for a course of standard chemo may not be much to write home about. But we can aim higher. My doctor runs clinical trials that mix chemo with experimental drugs that act as a kind of booster, where experimental means a drug not yet approved by the FDA.

The trial she recommends combines two traditional anti-cancer drugs (Temodar and Abraxane) with Genasense, an experimental one with exciting possibilities. It has already achieved eleven of the twelve FDA requirements and it has my doctor’s team lobbying for its acceptance. She’s been invited to Spain in a few months to present her findings in conference there.

So I’ve signed up to start this trial next week. My doctor’s enthusiasm is contagious. Her findings so far indicate that patients who respond to this treatment respond “completely”. She’s achieved a high rate of total remission where other treatments had limited success. Even more striking than overall statistics is the success rate achieved in patients with normal levels of blood enzyme LDH. She’s excited about the potential in my case where I am healthy and have excellent blood numbers. There are potential side effects, but for the most part patients are not sickened as they typically are with chemo.

I’m sure I’ll have plenty of mood swings over the course of the next many months. This course of treatment runs in eight week segments: six weeks on medication and two weeks off during which they run more CT scans. It can be repeated up to a total of four cycles. Most of the treatment is administered at home via pills and by pumping the experimental drug through an IV device embedded under my skin near the collarbone.

Right now I’m studying the materials my doctor has given me, anticipating placement of the “mediport” IV device on Friday, preparing for the eventuality of losing my hair, and thinking about the client work I need to get done now that I have some of my mind back.

More updates to come….