Life is not fair

As of this afternoon, I am now enrolled in a clinical trial at the Royal Marsden. It’s for the drug-formerly-known-as-Plexxikon, and is now called Vemurafenib. The drug turns off the BRAF gene, found in about 50% of melanomas. You can find more information about it here.

I’m in no immediate danger, as the only cancer left is in the retroperineal lymph nodes (?), which isn’t going to kill me. Although it could, of course, seed further tumours. So the idea is to blast it now, and see if it stays blasted.

What are the odds of it working? Well, first I have to be bested for the BRAF gene. About 50% of melanomas (so my oncologist tells me) have this mutation. Overall response rate is about 70%, I think, and of those 70%, a few–say 10%–have a “complete response”, meaning that the cancer vanishes entirely. So, before the BRAF test, my odds are about 35% that I’ll have a temporary response, and about 0.14% that I’ll have a complete response. But of course, calculating odds like this is meaningless (as my survival so far shows*), so we’ll just have to wait and see.

* I was diagnosed with a metastasis to the brain in July of 2009. Mean survival with a brain metastasis is 4 months from time of diagnosis. I’m now at 13 months and counting. Molon Labe, Melanoma.

I haven’t posted anything for a while, so I thought I’d use this almost palindromic date to update the readers of this blog whom I know personally (which is probably both of them about the situation with my cancer.

First, the brain tumour that was diagnosed in July and treated in August of last year doesn’t seem to be doing much. As the usual survival time for patients with brain cancer metastases is 3-4 months, this is generally good news. It is highly unlikely that the radiation treatment has killed the cancer; however, it does seem to have stunned it. How long this state of affairs will last, I don’t know.

Second, it seems likely that the cause of my anemia is a lower GI bleed with a source somewhere in the small intestine. This means it’s almost certainly a result of a metastasis. There are other things it could be, but the overwhelming probability is that it’s the cancer spreading. There’s nothing on the CT scan, however, which means that it might not be very large. Which is good. I’m going in for a capsule endoscopy on Wednesday of this week. This should find the source of the bleeding. If it doesn’t, then I might have to have an exploratory laparotomy. Which would suck. If it turns out to be cancer, the likely outcome will be surgery. Again. Lucky me, eh?

Third, the CT scan showed some cancer in another set of lymph nodes (the peritoneal), which means probably an operation at some point to remove them. Not huge surgery, but the drains will stay for a few weeks as the lymph system heals. Sucky. The CT scan also shows an indeterminate dot in my left lung. Could be cancer, could be nothing at all. It’ll be checked on the next scan for comparison. If it vanishes, that would be awesome. If it gets bigger, that would suck.

So that’s about it. Don’t expect frequent updates on here. I post more about things like this on Facebook, so if you haven’t friended me, go ahead.

Went in to see the oncologist today. Saw the consultant rather than one of the registrars. He seemed very pleased to see me well, which was nice. I’ve been having spells of dizziness after standing up, and I was worried that this was the tumour acting up. The oncologist said this would be very unusual behaviour for a brain tumour, and that I should look out for the symptoms from last year: visual disturbances, balance problems, weakness on right side, inability to judge distance, etc. I was tested for blood pressure drops when standing (negative), then had blood taken to check my thyroid and a couple of other things. He said he wasn’t worried enough to order a scan, but to call in if anything worsened, and he’d order an MRI for me. Next appointment, August 10th.

Short version: I’m now sufficiently unusual that the consultant is taking a personal interest. This is a good thing.

How unusual? Well. How to answer that?  Have a look at this link:http://www.skincancer.org/management-of-melanoma-brain-metastases-where-do-we-stand.html

I had Whole Brain Radiation (WBR) for my brain tumour. Median survival is 3.5-4 months. I’m now at 10 months and counting. I don’t know why I’m not dead. I want to say something meaningful at this point, but I can’t think of anything that doesn’t sound like a line from a movie.

I’m smiling, though.

Some interesting news about melanoma treatments came in to my inbox (as well as the usual frankly dismal survival stats).

A diagnosis of melanoma is very bad news: Millimeter per millimeter of tumor, it’s among the deadliest cancers. Typically first appearing as a dark, irregular skin lesion, it can spread rapidly to every organ. There are some 68,000 new cases of melanoma in the United States each year, and the incidence is growing, despite warnings to stay out of the sun or wear sunblock to minimize exposure to ultraviolet radiation, the disease’s most important risk factor. Highly curable if found early, melanoma grows aggressively if undetected. Nationwide the cancer kills almost 9,000 people a year, mostly those with fair skin, often in the prime of life and frequently within mere months of discovering that their cancer has metastasized far and wide.

The best hope is a harrowing treatment for which only the fittest patients qualify: intensive immunotherapy that uses high doses of interleukin-2 (IL-2), a potent immune hormone. IL-2 therapy requires multiple hospital stays, during which patients receive intravenous infusions several times a day. The catalogue of side effects includes a racing heart, flulike chills, decreased blood pressure, vomiting and diarrhea, and edema, which can cause 10 to 20 pounds of weight gain.

Even then, no more than 20% of patients who get the treatment benefit, though 6% appear cured for life. Still, immunotherapy is better than the only other Food and Drug Administration-approved treatment for advanced melanoma: Chemotherapy with dacarbazine gets only a 10% response rate, and patients survive an average of just seven months.

Keep reading.

I told my three kids about my prognosis today. A very unpleasant and difficult thing to do. Robert, the oldest, started crying and hasn’t stopped. Alex, the middle, cried hard, then some time later asked if I could buy him a game before I died (thanks, Alex). And the youngest, Harry, said ‘you’re not dead now?’, so I assured him I wasn’t.

Life with cancer sucks.

Well, actually he was quite a pleasant and likeable chap, but I just thought that title sounded neat. Anyway, I went into the Marsden yesterday for the melanoma clinic, armed with a list of questions I wanted to ask. In summary, my prognosis is as follows: Read the rest of this entry »

Following on from last week’s post. The headaches got worse and worse, and then I started getting double vision, muscle weakness in my legs, and some confusion. On Wednesday, while on the phone to my Mum, I fainted in my kitchen. After I called the hospital, they asked me to come in for clinic on Thursday.

In the clinic, I was given a neurological examination, then the oncologist said “we need to scan your brain.” The scan couldn’t be done same day, so I had to come back in on Friday morning for an MRI scan on my brain. As soon as the tech had finished the scan, she said “Dr X wants to speak to you in outpatients,” and that’s when I started worrying. Read the rest of this entry »

The Median Isn’t the Message by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before – lies, damned lies, and statistics. Consider the standard example of stretching the truth with numbers – a case quite relevant to my story. Read the rest of this entry »

Have a look at this:

Check out the curve for Stage IV melanoma (which is what I’ve got). My diagnosis was in September 2009. It’s now May 2010, which means my time from diagnosis is nearly nine months (early September diagnosis and late May posting). The graph’s only approximate, but check out the nine month point for Stage IV melanoma.

By this point, 50% of Stage IV melanoma patients are dead.

I’ll know more when I have my next scan (to be scheduled), but right now I’m NED (no evidence of disease). I’ve been very lucky so far. I just hope it continues.