Resurgence

A year ago I graphed my CEA to show how that tumor marker tracked the growth and remission of my cancer. Now it's time for an update:


At the end of 2008 it looked like my cancer was headed toward oblivion as all of my tests were clear and I was feeling good (aside from the chemotherapy side effects). We continued Xeloda and Avastin for a few more months to be safe. My CEA came back up a bit but held steady within the normal range (below 5.0 ng/mL for a cancer survivor). As the cumulative side effects of Xeloda mounted we stopped that drug and planned to continue with just Avastin to keep any tumor growth in check.

A couple months later I had some pain and fevers that led to scans and a sigmoidoscopy which revealed a new tumor in my rectum and another nearby. So I went back on Xeloda, continued Avastin, and added oxaliplatin, an ingredient in the FOLFOX regimen which was my first round of chemotherapy in 2004-2005. The oxaliplatin made me feel awful, but for three months now my CEA has been rising.

So it appears that Xeloda, Avastin, and oxaliplatin have lost their effectiveness. Later this week I will get new PET/CT scan results and discuss plans with my doctor. The leading candidates to try next are mitomycin C (an older chemotherapy drug) and panitumumab (a newer relative of Erbitux, the drug that made me sick and ugly in 2006 but failed to stop my rising CEA at that time).

Died young

In the past day I learned that two of my friends with cancer died this week. Both were a little younger than me and struck with the disease while still in school.

One of them I met while I was getting treatment for my first recurrence, two years after my own initial diagnosis. She had a very similar medical history and even shared the same surgeon and oncologist. I tried to offer some encouragement and advice as she began her own battle. Unfortunately she had more trouble with the treatment and her cancer was more aggressive.

The other I met earlier this year through a support group for young adults with cancer. He had a rough time with repeated and painful metastases, but kept fighting, organized the support group, and enrolled in graduate school.


They say that people with cancer are living longer and that cancer is becoming a manageable long-term disease like diabetes. But with the recent loss of these two friends and the high profile loss of Tony Snow and Randy Pausch, it's apparent that cancer is still efficient at dishing out tragedy.

Symptoms of rectal tumor

Caution: This post deals with graphic details of colon cancer. It's probably of more interest to those experiencing such symptoms than to someone here to learn about cancer in general.

In the 2.5 months since restarting chemotherapy for my colon cancer recurrence I have noticed some new symptoms. Actually, they started a few weeks before the diagnosis and are part of what prompted the tests that found two new tumors, one inside my rectum and one in the adjacent soft tissue.

I often have a feeling of fullness in my rectum like I'm ready for a big bowel movement, but when I go to the bathroom I pass only a little bit of stool. Or sometimes I don't pass any stool but just a couple teaspoons of tan mucus. Whatever I pass removes the urge, but it doesn't seem like enough to produce such an urge in the first place.


Now that we know there's a 1-inch tumor in there, I think that it's crowding my rectum and leaving me 75% full all the time. Then when a little bit of stool comes along I feel like I have a lot. That happens 6 to 12 times a day, and I usually wake up 2 to 4 times each night to relieve myself.

Another problem is that it's gotten harder to pass gas. I used to be able to feel gas enter my rectum and then pass it through my anus, usually without a fart sound. But now it seems to collect further upstream, and when I push it escapes loudly. Or it stays trapped until I pass the little bit of stool blocking the exit. Sometimes after a bowel movement I think I'm done, but when I stand up things shift around and I realize I have a bunch of gas to pass.

The sensation of fullness has also made it hard to determine when I have just an exaggerated feeling and when I really do have a big urgent bowel movement. That's led to some close calls when I wasn't prepared to deposit the unexpected proceeds.

All of these new symptoms make me uncomfortable at times. Most of the day I'm okay and if I'm busy then I'm less aware of the sensations. But it's more difficult to be in a close social situation or away from easy access to a bathroom. I get some relief when I take the pain-killer oxycodone which diminishes the rectal discomfort and slows intestinal motion for a few hours.

It's kind of scary to have symptoms that seem to arise from the cancer rather than the treatment. I'm used to dealing with nausea, fatigue, hair loss, and chemotherapy-induced bowel irregularities. But having new problems due to the cancer which might continue to worsen unless we find a way to shrink the tumors is scary.

You won't give up

A few days after my recurrence was diagnosed, I woke up one morning to a voice saying: "You won't give up. You've been through so much already."

My first impression was that it was my mom talking to me – nevermind that she was in Europe at the time and I hadn't yet told my family about the return of cancer. But it wasn't exactly her voice and I had a sense that it was someone else speaking, and not necessarily somebody that I knew very well.

Of course being the moment between sleep and wakefulness I can attribute the message to a dream. And I'm not very spiritual so it's hard for me to say that it could be supernatural. But it's also hard for me to believe that that particular message came from my own mind.

In particular, the message wasn't "Don't give up" or "You'll be fine". It was "You won't give up", which is something I wasn't very confident about. It's taken a tremendous amount of effort to get through four years of treatment, and I'm not as young, naive, and cheerful as I was at the beginning. I have been hopeful, but this recurrence and return to treatment has come sooner and harder than I was ready for.

So I'm not sure that everything is going to be fine. And I'm not confident that I have a plan ready to get through another round of chemotherapy and radiation. But it is somehow reassuring (as well as exhausting) to be told that I still have a fight left in me.

Second recurrence

In April my oncologist let me stop chemotherapy with Xeloda. My scans and CEA had been normal for six months and we hoped that I could remain disease-free without continued treatment.

It felt nice to be off of chemo, finally able to spend more time at work and play without the old two-week chemo ickiness cycle. I was still pretty tired and had lingering side effects, but I expected those problems to improve over the coming year.

One day in June I noticed a new pain or fullness in my rectum – nothing too surprising with all the surgery, chemotherapy, and radiation that it had been through. A few days later I developed a 101 degree fever that came and went for the next ten days. My oncologist prescribed an antibiotic and sent me for my three-month PET/CT scan as well as a sigmoidoscopy.

The sigmoidoscopy came first. My colorectal surgeon, the one who diagnosed my colon cancer in 2004 (to his own great surprise), said he saw another tumor like before. It was growing from the site where my colon and rectum were reattached, about an inch wide and beginning to interfere with the passage of stool. He also saw evidence that there was something outside the colon pressing inward.


Two days later I had the PET/CT scans. They showed a one-inch tumor at the reattachment site and a two-inch tumor in the adjacent soft tissue.

This news is very disappointing. Just as I was recovering from eighteen months of chemotherapy plus radiation and making plans for the future, it's all spoiled and I'm thrown back into treatment.

We are now trying oxaliplatin, a drug that was given as part of my first chemotherapy but which my body hasn't seen in three years. We're also throwing in Xeloda and Avastin again for good measure. My radiation oncologist wants to irradiate the tumors to prevent bleeding and protect my leg nerves from intrusion into my tail bone. We'll start five weeks of daily radiation in late August.

Aside from the nausea of my first dose of oxaliplatin I'm feeling pretty good. Energetic, clear headed, strong, and mostly pain-free. But I'm unhappy to be returning to the drag of chemotherapy, especially one harsher than before. And I'm worried that with no new miracle drugs these tumors will become resistant and my health will be all downhill from here.

Writing about cancer

I haven't published anything here in a while. At first that was because I had just finished with Xeloda and wanted to focus on non-cancer things for a while.

Later I did write some partial posts but never finished them. I felt that they sounded too optimistic, too preachy, or too pathetic, so I wasn't comfortable sharing them.

Then in June I felt sick for a couple weeks and got busy with tests to figure out what's wrong. I have some news to share from those in a few days, after I know more about what's going to happen.

In the meantime, I was pointed to a blog called My Cancer. It's by Leroy Sievers, a journalist dealing with advanced colon cancer. It's frightening for me to read his recent posts as he's suffering from the effects of widespread metastases that are likely to be in my future.

But it's an interesting, voluminous, and insightful blog. He even has a post on this same topic called Put On a Happy Face?.

Professor of Colorectal Cancer

I stumbled across an excellent colon cancer blog by Heinz-Josef Lenz, a scientific director and professor at USC/Norris. He writes about a variety of topics:

• Diagnosis (and commonly misdiagnosis in young people)
• Available therapies
• Clinical trials
• Cancer research
• Common symptoms
• Health insurance
• Issues for family and caretakers

There's lots of advice that I wish I had sooner and information that might be useful in the future.