Life is not fair

So. I went in to the Royal Marsden on Monday this week to get the results of my CT scan from Friday, and also to pick up the trial drug (vermurafenib) that they’re putting me on. There was some good news and some bad news.

Bad news first. The CT scan showed that the cancer has returned at the site where I had the most recent operation. I’ve got a 5cm axial mass in the mesentery close to the beginning of the small intestine. It’s been joined by a new 5cm diameter mass near my bum. Neither mass is immediately life threatening–but it’s kind of worrying that in the space of four weeks, they’ve grown by this much. If they get much larger, then there are possible problems with bowel obstruction and the tumours spreading to other organs by physical contact. That’s when the oncologists would start taking action–probably more surgery. At the moment, though, they’re just going to leave them alone. There’s no curative surgery remaining for my cancer. Any further surgery will be palliative only.

There was also some good news as well. The rest of my torso seems clear of cancer. The CT before last showed a small dot on my lung, which was flagged as a possible lung met. This latest CT scan showed it hasn’t changed at all, so it probably isn’t melanoma. The met in my brain seems to have shrunk a fraction. At any rate, it isn’t doing anything at all. It’s possible that the radiation killed it. It’s also possible that it’s just been knocked out for an extended period and will return next month. Without a biopsy, which involves a needle going into my brain, it’s impossible to tell.

I picked up the trial drug the oncos are putting me on. It’s vemurafenib, and the research nurse gave me some updated stats on how patients are responding. The average response seems to be that tumours shrink by around 30-40%. This effect lasts for about six months before the cancer starts growing again as the melanoma* mutates to use a different metabolic pathway. But although this sounds fairly grim, it’s actually a breakthrough in melanoma treatment. Which tells you how crappy the standard treatments for melanoma are. On the other hand, this time last year, when the cancer had spread to my brain, the oncologists implied I had three-four months to live. Twelve months later, I’m still here, so WTF do they know, right?

Side effects of vemurafenib include joint ache (none yet), skin rash (none yet), upset digestion (a little), squamous cell skin cancer (not yet–tends to happen in older patients), and photosensitivity. The nurse warned me to use factor 50 sunblock, wear a hat, and use a UB blocking lip balm. She also warned me the photosensitivity would start as soon as I began on the drug. Like the sad fool I am, I just nodded, and thought ‘yeah, yeah.’

I went running today. Day one of week two of the Couch to 5k plan. 30 minutes outside, some in direct sunlight, mostly not. I applied factor 50 sunblock, but didn’t wear a hat. I am now sporting a low-grade sunburn (very red cheeks and forehead). Silly me. I will certainly be wearing a hat in future. A fricken big floppy sunhat. It’s going to look kind of strange, running in a floppy sunhat, but as I’ve been told I look fairly odd while running anyway, I guess I’ll just have to grin and bear it.

*Yes, okay. It’s not ‘the melanoma mutating’; it’s the proliferation of melanoma cells which use a different energy pathway, analogous to the spread of antibacterial medication resistance in bacteria. Happy now, you damned pedants?

Well, just got the results from my capsule endoscopy back. The bleeding is coming from something high up in my small intestine, and there’s signs of abnormal tissue around it. It looks like it’s at least one melanoma metastasis, and possibly a couple of others. All of them are small, but at least one of them is bleeding. I’m schedule for a enteroscopy tomorrow–the doctor is going to stick a tube down my throat and tattoo the bleeding area. Apparently then the surgeons will know where to look when they cut me open. He’s also going to try and seal the bleeding with some kind of futuristic heat ray thingy. (More science fiction from Queen Mary’s. Great.)

The surgeons at the Royal Marsden are going to try and get me in for emergency surgery some time next week. The section of intestine with the bleeding lesion is going to be removed. If the other little bits of melanoma are close to it, they’ll be chopped out as well. If not, they’ll be left in place until they start doing something naughty. It’ll probably mean about a week in hospital.

This is how it goes with Stage IV melanoma. There’s no cure, just management. They’ll keep cutting it out until it appears somewhere where it can’t be cut out. And then we’ll start chemo.

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.

The Royal Marsden phoned yesterday. Apparently, I’m very anaemic–which explains why my training has turned so crap recently. It’s so bad they want to give me a transfusion some time next week. Ho hum.

From what I can work out, they suspect I might be bleeding internally. The most likely culprit is a melanoma metastasis to the small bowel, which has ulcerated and is bleeding into the bowel. But I haven’t experienced any intestinal pain or obstruction, and I haven’t been (excuse me, this is gross) passing melena (bloody number two). Or it could be that I’m bleeding from another ulcer. I had a tube down my neck in January that showed my ulcer had healed, but I could have developed another. I’ve certainly been getting enough stomach pain for this to be the case. I thought it was just reflux, but could be another ulcer, I guess. But again, there’s been no melena.

Another possibility, and this is what I hope it is, is that the combined doses of Ranitidine and Lansoprazole I’ve been taking have affected my uptake of iron from my diet. Stomach acid is needed for digestion of many nutrients, and long term use of antacids is associated with iron-deficiency anaemia. Added to this is the fact I’ve been taking iron supplements for a week now, and I’ve been feeling better. I’m going to stop taking Ranitidine for a month or so, and see if this has any effect.

Unfortunately, because of my history, the Royal Marsden want to make sure I’m clear of a stomach/intestinal metastasis. This means tests. And that means cameras down the mouth and cameras up the bum. Hopefully this won’t happen at the same time, because that would really suck.

They’ve also forbidden me to go running. Which also sucks.

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.

Well, actually the title is not strictly accurate. It should be something like ‘hair five years ago, gone today’, but that just doesn’t scan.

Yes, my hair has started falling out from the radiation. It’s not coming out in great chunks like it does in the movies; it’s more like a slow continuous fall of individual hairs. Whenever I scratch my scalp (which feels itchy from the radiation), a few hairs come away under my nails or attached to my fingers. Read the rest of this entry »

A little late posting this, but there you go. The last day went smoothly enough, aside from a couple of minor panic attacks on the tube, when I had to squeeze past crowds on the platforms, and I had sudden horrible visions of stumbling over my own feet and toppling onto the rails. Very tired, though: feeling as though my head was crammed full of cotton wool. Some nausea as well when leaving, which wasn’t helped by the train ride . . . but I ate a Bacon Double Cheeseburger at Euston, and that seemed to sort my belly right out. Hurrah for Burger King!

The radiologist warned me that the immediate sided effects would last for perhaps another two weeks, and could intensify over the weekend. And so it happened: Read the rest of this entry »

I started my course of whole brain radiation today. The appointment was for 9.40, and I was a little worried about being scrunched in the train during the rush hour getting in, but as it turned out, the trains were all half empty–it must have been the weather. Seems like a lot of people have decided to take a sicky today. Bit of luck for me and Fon.

Arrived outside the Royal Marsden at 8.40 after less than an hour travelling, which is good, considering the normal duration is about 1.30. Had a tremendous coffee and pain-au-chocolat in Cinq (a cafe just opposite the main entrance to the Marsden, on the Fulham Road. I recommend their steak sandwiches unreservedly), then went into the radiation basement. (Thick doors, yellow warning signs, very obviously sick people. Bad coffee. Cheerful, smiling, empathetic nurses. It’s an odd place.) Read the rest of this entry »

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Powerful stuff.

When I found the lump under my armpit, I knew immediately it was melanoma. It was hard, and fixed in position (both signs of tumours rather than inflamed nodes). I don’t think I truly understood the odds I was facing until that point. So I went back to the hospital and spoke to a nice female Australian resident (and just why are so many of the junior doctors in the cancer unit from the antipodes?), who didn’t seem particularly worried about it. She scheduled me for an ultrasound, then a possible biopsy–but only if it looked ‘suspicious’.

I had to wait a week for the ultrasound, during which time I managed to convince myself that it wasn’t melanoma after all (this is why ‘positive thinking’ for cancer is bullshit). Read the rest of this entry »