Aftermath

By the time I got to Grand Central yesterday afternoon after leaving the client, I was Cinderella and my gown was starting to shred. By the time I got home I could barely walk again.

Per doctor’s orders, I increased the dose of my pain patch and got into bed at 7:30. I didn't take an anti-inflammatory before falling asleep, hoping the patch would do it by itself, but I woke during the night in a great deal of pain, so I took a Naproxen then. I was in pain a lot of the night, but managed to sleep until 10:30am when I woke up groggy and still in some pain after more than fourteen hours sleep!

My doctor says I probably overdid it.

The doctor’s admin just called to let me know she’d gotten the next scan approved and scheduled for tomorrow afternoon. She’s the greatest at getting things done!

So it’s been another lost day: naps, pain, lack of focus. I hope we can get to the bottom of this soon.

Latest results

“The scan is what we expected,” my doctor said when she entered the exam room. “No new disease, but the tumors that are there are lit up. That’s because they’re inflamed."

She was referring to the PET portion of the scan which tracks the radioactive glucose injected into my body beforehand. Malignant cells gobble up the glucose more readily than regular cells, so they show up as points of light in the pictures.

"If it were up to me, I wouldn’t do the twelve-week scan at all, just the one at twenty-four weeks. But the FDA requires it.”

My side effects over the past three weeks have been nearly unbearable. The itch and rash are gone, for the most part, but I’ve still got pancreatitis, so I continue to have bouts of nausea and vomiting, even though the anti-nausea pills I take control my queasiness during the day. I also sleep a lot, feel very weak, and have extremely low energy when awake. When I reported the symptoms to my doctor, she sent me to the treatment floor for an infusion of steroid to boost my energy level.

In fact, from the laundry list I presented, she suspects hypothyroidism as well as pancreatitis, so she also ordered more blood tests, commenting that the immunotherapy tends to unleash certain elements into the blood that cause “little itises”, and these inflamed organs can cause lots of uncomfortable symptoms. She’ll call me with results of the tests, and plan to see me in a month to make sure things are under control by then. We’ll be in touch via email and I’ll go in to see her sooner if things don’t clear up by next week.

It’s unnerving for me to watch this process continue. I would certainly like to be disease-free. I’d like to stop having side effects from drugs that address one issue while compromising another. I’d like to forget about the medicine-balancing-act that attempts to keep it all under control.

On the other hand, the disease has not progressed in over a year. That is certainly good news. It makes the condition manageable. At that slow rate, it gives the immunotherapy a chance to settle in and work over the long term.

New treatment

I met with my doctor to discuss the results of my latest scan and the news is, well, mixed. There are still no hot spots on the PET scan, but the largest tumor has actually increased in size a small amount. The remaining tumors appear to have developed resistance to the chemotherapy.

My doctor says she wants to intercept this new trend early and switch my treatment. Her new plan is to pull me from chemotherapy and start immunotherapy instead. This type of treatment takes a different approach in that it doesn’t attack the melanoma directly. Instead, it is an antibody, a common blood protein that stimulates the body’s immune system to a higher level of vigilance.

A healthy immune system’s T-cells attack foreign bodies, and are normally modulated by a protein called CTLA-4 that shuts down the process when it’s no longer needed. Without CTLA-4, T-cell activity can continue unchecked and become an auto-immune disease. But in the case of cancer, CTLA-4 may suppress the immune activity prematurely, giving the cancer an opportunity to grow without T-cell intervention. Research indicates that interrupting CTLA-4 can allow the immune system to continue to attack the cancer.

In a couple of weeks I’ll get my first infusion of Ipilimumab, this new drug whose name I absolutely can’t pronounce. The treatment will be simpler than what I’ve been through: one infusion every three weeks for a twelve-week cycle. Side effects can include fatigue, itchiness, rash, and diarrhea; they may be minimal, and I might even get my hair back.

How do I feel about all of this? I’m not happy to find out how resilient this damn melanoma is. It’s pretty distressing to be reminded there is still cancer in my body and it can thumb its nose at my attempts to get rid of it. Additionally, starting a new treatment fills me with the dread of the unknown. It may be simpler, the side effects may be minimal… but I don’t know that yet. I’m sure I’ll feel better about the process when it’s underway.

On the other hand, my doctor says that patients who undergo this new treatment after taking Temodar tend to do really well. Temodar may somehow set the stage for very efficient T-cell activity.

Time will tell….

The little buggers are on the run!

I had my second PET scan on Monday, a follow-up diagnostic test just like the one I had in mid-June. This one was administered to measure the effects of my first six weeks of chemotherapy.

The procedure started with an intravenous infusion of radioactive glucose and a large drink of barium sulfate. Then I sat for about an hour while my body took up the fluids.

Next step was a CT scan. I lay on my back on a table that slides into a huge, space-age looking device. If you’ve never encountered such a machine, in person or on the likes of Grey’s Anatomy, this very imposing piece of equipment is a large, round, open-ended tunnel that projects x-rays toward you as you slide slowly through it. Unlike a simple x-ray machine, it records a series of images that present a three-dimensional view of the subject’s insides. It’s not painful or particularly uncomfortable. You simply lie still as the table slides to the proper positions to photograph what the doctor wants to see. This procedure took another hour, as they scanned my entire body, head to toe. A trained radiologist later reviewed the recorded images.

All cells consume glucose, but malignant cells are particularly greedy. They have a higher rate of metabolism than normal cells, so gobble up the glucose voraciously, and in the process, they light up from the radioactive substance. The radiologist looks for these metabolic “hot spots” to determine where tumors are growing.

In June, they identified about ten tiny nodules. This wasn’t a lot of cancer, either in size or amount. The largest tumor was less than two centimeters. Two months later, this past Monday, there were no hot spots at all! All the glucose was taken up equally. There were no visible pinpoints of light in the PET portion of the scan.

So where did they go? Well, the tumors are still there. They are dead and dying, but my body hasn’t fully absorbed or flushed them. They show up on the CT images as dull concentrations of cells, but there is nothing “hot” to be found.

I met with my oncologist this morning. She is very excited about these results. Needless to say, I am also. She tells me that when patients respond to this treatment in this manner, they respond “completely.” They go into remission “forever.”

Those are actually hard words to hear. I’ve been so very anxious the past few weeks, increasingly so as the date for the PET scan approached. I’ve been preparing myself for the best possible outcome, but I also have experience being blindsided. Twice, cancer fell out of the sky and took over my life. Twice, I got phone calls informing me I had melanoma I had no suspicion was there. At the same time I felt that my body was strong and healing, I was afraid to ignore the possibility of unwanted results.

“And how long is forever?” I asked, cautiously optimistic. After all, I was cancer-free for five years until this spring.

“Eight years,” the extent of the research so far with this clinical trial. Patients continue to get scanned once a year, but so far, their cancer hasn’t returned.

Where to next?

This coming Monday I’ll start the second treatment cycle. Another six weeks of drugs, starting with a weeklong infusion of Genasense. Genasense is the experimental drug that acts as a sensitizing agent. It alters the melanoma’s DNA so it’s no longer programmed to live and grow forever. In its weakened state, the melanoma is very susceptible to the killing power of the Abraxane infusion that ends the first week.

I will undergo at least two more entire treatment cycles and possibly a third; that’s another four to six months of managing side effects and missing my hair. On the positive side, the treatment is moving in the right direction, and I feel about a hundred pounds lighter!

Pencil pushers

I'm waiting to get scheduled for that next test, a PET scan. It's a CT scan in conjunction with an injection of radioactive glucose. "Hot" cells absorb the glucose more readily than regular cells and light up from the radiation, so the docs can see where else the disease has migrated. My doctor needs the results to recommend a course of treatment.

The insurance company is haggling over whether to allow the test. They think they know better than my doctor just what constitutes valid treatment.

“Is there some way I can put pressure on the insurance company to help this situation along”, I ask the office admin. She tells me no. They haven’t denied the procedure. She’s faxed over all supporting documents and they are reviewing it. Unfortunately, she has to deal with this kind of shit all the time. If she gets the approval today, she can schedule the scan for the weekend.

And in fact she did!

Rosie’s an angel. She sees patients’ anxiety firsthand, and sees the unconcerned way the bureaucrats toy with their fates. My doctor friends are continually frustrated by those pencil pushing drones. But she does know how to get things done. Thank you, Rosie.

I have a Sunday afternoon appointment for the PET scan, and will see my oncologist the next day. I feel better already just knowing I can start to schedule other parts of my life.