Life is hard

Many of you have contacted me in the last three months since my last blog post. I’ve gotten emails and phone calls asking tentatively if I’m all right.

I appreciate the concern shown by you, my dear friends. I feel guilty for having set up an expectation with this blog and then abruptly abandoning it when life got hard for me. I haven’t wanted to talk about what seems to me to be ugly and sordid. My reputation is sullied in my own eyes, and I haven’t wanted to share that. I don’t feel good about myself. I’ve been depressed.

To set the record straight, my health is good. I struggled with side effects of the immunotherapy through the summer. The itching of early July faded into pancreatitis that lasted about six weeks. Pancreatitis is a bitch. I lost most of my interest in food, and whether I ate or not, I was dogged by bouts of nausea and general queasiness. I lost some weight and was weak and tired. From July through the middle of September, my throat was congested, probably from post-nasal drip. I coughed and cleared my throat constantly for weeks. It disappeared as suddenly as it showed up. By the time it left I felt my energy returning. I started exercising again, tackling paperwork I hadn’t been able to address in a year, and pushing myself to get things done. As I became more productive, my stress over my financial problems subsided a bit. Things were looking up.

And then came today, my latest doctor’s appointment to discuss the PET scan I had on Monday.

It was my first appointment since August. I was happy to see her and started babbling small talk when she entered the office. The look on her face stopped me short.

“What is it?” I asked. “The scan?”

“Yes.” She took time to compose herself.

“How bad?”

“The pulmonary tumors have increased in size and number. The disease has spread. There are new tumors in your liver, possibly your bowel, and your spine.”

“What?! How can that happen?”

“I don’t know. I hate melanoma.” This wasn’t the first time I’d heard her say that. “It’s vicious, aggressive, and unpredictable. When the radiologist called last night and said she had bad news, I had to stop and think who’d been scanned. I knew you were scheduled, but I was completely unprepared for bad news about you. I was so upset, wondering how I was going to tell you, that I couldn’t sleep.”

“I’ve had patients on immunotherapy who looked very good and their scans were good, so we continued the treatment. I’ve had patients who looked very bad and their scans were bad, so we switched them to something else. And I’ve had a very few, like you, who looked very good, but their scans were bad. In those three cases, I took them off immunotherapy immediately and put them on chemo, which is what I’m going to do with you too. In all three cases they achieved complete remission. That’s no guarantee; three is a very small sample. But it’s possible the immunotherapy sets up your immune system to work with the chemotherapy and make it more effective.”

“So the treatment I’m scheduled for today will be chemotherapy, not Ipilimumab?” I asked.

“It’s possible that continuing with Ipi would eventually turn things around by itself, but I don’t want to take that chance.”

“Will I lose my hair? I’ve rather come to enjoy these white curls.”

“You won’t lose your hair. You’ll have three treatments, three weeks apart, then another scan.”

I saw her eyes tearing up. “It’s not your fault,” I said.

She put her arms around me and said. “It’s just that I like you so damn much.”

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.

Queasy

The last few days I’ve had an on-again-off-again ache in my stomach. It feels acidic, ulcer-like. Sometimes it swells and blooms into a wave of nausea. Two days ago it grew very strong and I vomited most of the meal I’d just eaten. Last night it happened again several hours after dinner. I didn’t have much in my stomach at that point, so I stood over the toilet drooling and dry-heaving until it passed. In both instances, it passed pretty quickly.

Big question: Is it the drugs or is it the stress? (Or maybe the cabbage salad I’d eaten both days?)

Footnote: I met with my doctor earlier and told her about the vomiting. She had my latest lab report in front of her and was about to ask me if I’ve been nauseous. The labs showed an elevated level of pancreatic enzymes, “a touch of pancreatitis” which can cause nausea, especially from fatty foods.

In addition to the cabbage salad, I had spare ribs both days. I cook them on the outdoor grill with nothing on them, so a lot of the fat drips off, but they are still a fatty cut of meat.

Mystery solved.

I’m at the Cancer Center for the last of my four initial immunotherapy treatments. In three weeks I’ll have a scan, and see my doctor a couple of days later. Then I’ll be free of medical appointments for three whole months!

In late October I’ll have another, more meaningful scan, and a maintenance infusion of Ipilimumab, and that will be the schedule from then on: treatment and scan every three months as long as my doctor and I want to keep it going.

In truth, I feel very good. I like the idea that my own immune system is doing the heavy lifting; I’m not being force-fed poisons that kill everything in sight and suppress my immune system in the process. Chemotherapy is hard to endure; this treatment is much easier on the system and much easier to live with.

On a new course

I started my new treatment this week. So far so good. My doctor and I were talking about what side effects I might expect, most typically rash, itch, and diarrhea.

“But most patients don’t see those until after the third cycle, if at all,” she said.

“Third cycle?” I asked, visibly distressed, recalling the schedule the nurses handed me last week when I was in the office for blood work.

“I meant the third treatment. You’ll have one now, then again in three weeks, then a third three weeks after that.”

“But the schedule they gave me last week has appointments through October. I thought a cycle was twelve weeks, and their schedule includes two full twelve-week cycles.”

“Yes, but the second twelve weeks is observation only. You get scanned after the first twelve weeks. We watch, and let the meds settle in to work for another twelve weeks. Then you get scanned again. This treatment is long-acting. We’re not likely to see any change until after that second scan.”

I was still stuck on the schedule they’d written out for me, so I pulled it out of my bag.

“See, it shows appointments all along through the second twelve weeks.”

“Well that’s a mistake,” she said, to my relief, and went on to explain more of the protocol.

After the initial treatment phase, patients go on maintenance, with infusions every three months. Because this is still a research study, there’s no definitive word about how long this should go on, but eventually, the treatment will reduce even further, or even be discontinued.

She warned that the first twelve-week scan frequently shows no improvement, and may even show a reversal. Patients however, tend to report feeling a lot better at that time, so the researchers have learned not to scan too soon, and not to take these initial results too seriously. The second twelve-week scan is when improvement is most likely to show.

After our discussion and hugs I went to the treatment floor, where the nurse administered my intravenous dose of Ipilimumab, and measured my “vital signs” (temperature, blood pressure, pulse) before during, and after the infusion. The process was painless, and I’ve been feeling fine since.

Oh, and I got a lesson in how to pronounce the drug’s name. It’s not so tricky after all: Ip-li-mu’-mab. Just trips off the tongue!

More fun with words

I commented to a friend, as I did here in my last blog post, that the new drug I’ll be taking has a name I can’t begin to pronounce: Ipilimumab. My friend happens to be a doctor and he said, “The MABs are monoclonal antibodies.” That was a term I’d heard my doctor use, but it didn’t occur to me until he said it that the drug’s name incorporates an acronym.

I still don’t know how to pronounce Ipilimumab, but it comforts my brain to know that its derivation has some meaning, that it’s not simply marketing gibberish.

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….