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?

Hospital called yesterday. My cancer has the BRAF mutation, so I’m eligible for the extended access to PLX4032/Vemurafenib. There’s a small (10% or less) chance that this will lead to a complete remission. There’s a large chance (70% or so) that it will lead to a prolonged (but ultimately temporary) remission. Still, I’m not going to complain about another 18 months …

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.

Went in for the enteroscopy today. I asked the very civil consultant to give me the maximum dose of sedation physically possible, plus a local spray to the back of the throat. Both of these made the procedure a breeze. He found the site of the bleeding immediately, gave me the good news that it seems to be very localized and that it should be easy to get out.

And in a rare case of the NHS moving faster than I’m comfortable with, I’m booked in for surgery on Monday to remove the dodgy section of small bowel. I have to go in on Sunday for blood matching and a couple of other things, then I go under the knife on Monday morning. Recovery time will probably be around a week in hospital, and then a couple of months more after that. But it also means I’ll be free of these bloody abdominal pains and the vile anemia that’s been plaguing me. It’ll take a while to build up to marathoning again, but I might be able to get into something in December (maybe a half). And there’s always the Watford Half marathon again next year.

On the plus side, I get to play with morphine again. Woo! On the downside, I will have to kick morphine again. Blech. If you’ve never done this,  it’s not nice. Morphine produces physical dependency in some people, like me, very quickly. Kicking it is . . . unpleasant.

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 went in to the Royal Marsden yesterday for a blood transfusion. It was the usual NHS hurry-up-and-wait deal. I arrived at 8.30 a.m., had blood drawn at 9.00, waited until 12.30, then started the transfusion. Two bags of blood, each supposedly taking two hours, but actually a bit more, as every time I moved my arm, the machine assumed there was a blockage and started peeping.

They also gave me a print out of my blood work. On the 12th, my HGB (measure of hemoglobin) was 8.5 (normal male count is 12-15), and other measures of the number of red blood cells were down as well. On the 27th, after eating a load of iron supplements, my HGB had actually dropped to 7.4. Also, a couple of other measures that indicate the amount of hemoglobin in each red blood cell had also dropped.

So . . . I’m probably bleeding somewhere internally. The melanoma nurse said my blood work was consistent with a slow internal bleed. No results from the ferritin tests they ran yet, but if they come back normal, then it’s not an iron deficiency.

Which narrows it down to either a bleeding ulcer or a melanoma metastasis which is bleeding. Neither is particularly great. The melanoma nurse said that normally melanoma patients with small bowel metastasis present with abdominal pain and dramatic blood loss. Mine is more a drip, drip, drip, which suggests it may be an ulcer.

CT scan on Tuesday, which may reveal more.

On a brighter note, I feel amazing today. I didn’t realize how weak the anemia had made me. I did 21 miles on the bike this morning and felt great. I’ll have to ask for more blood next time. Moar!

I just got off the phone with the Royal Marsden. I’m booked in for a colonoscopy and a gastroscopy on the same day. Yup. That’s right; they’re going to do one after another. It’s like the ultimate violation. It’s the probe! The PROBE!

Goddamnit. Bloody bastards.

And it’s only got a sensitivity of about 60%, so even if the result is negative, I can’t relax. Then it’ll be swallowing cameras and CT scans and wanky wanky wank. I hate having cancer.

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.

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.

I have an appointment with the Royal Marsden today–progress check on my cancer. Although I’m not having any symptoms at the moment, just thinking about going in to the hospital is making me antsy. The people are great, the standard of care is amazing, but it’s just not somewhere I can feel comfortable, and the thought of going in is casting a shadow over my morning.

On the other hand, I ran eight miles this morning and felt great, so there you go.