Life is not fair

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 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.

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.

Skin cancer comes in three different forms: basal cell carcinoma, squamous cell carcinoma, and melanoma. BCC and SCC rarely prove fatal (although sometimes they do kill). The one to watch for is melanoma.

Melanoma accounts for most of the deaths from skin disease, and over 90% of the deaths from skin cancer. Its incidence is increasing, particularly among people who are young and otherwise healthy. When caught early, the survival rate is 99%. When it has spread, the 5 year survival drops to 10% (or lower, depending on whose study you read). 50% of patients die within 6-9 months. There is no cure. Melanoma laughs at chemotherapy and shrugs off radiation. Surgery can remove some tumours, but the cancer returns in most cases. Some new drugs have shown promise–but the lead time for development is looooong, and new treatments in trials likely won’t help you if you’re diagnosed with Stage IV melanoma–remember that 6-9 month timeline? Yeah . . .

Melanoma affects different groups of people. The people most likely to develop it are white males living in tropical latitudes. If this is you, then pay attention to your skin. If you sunbathe, if you have a history of peeling sunburn, if you work outside, if you go swimming in bright sunlight a lot, if you live in a tropical latitude (yeah, MUIC staff, I’m looking at you!), then you need to start checking your skin for possible signs of melanoma. It won’t take long, and if you catch it early, you’ve got nothing to worry about.

Signs of melanoma can be found here:http://www.cancerresearch.org/resources/conquering-melanoma/p2.html

You should check every couple of months. Yes, I know that’s frequent, but some nodular melanomas grow like bitches. If you check every six months, you could have a cancer form, burrow into your skin, and spread. By the time you check, it’ll be too late.

If this sounds like I’m trying to scare you, good. This is one of the things you should be checking for, same as blood when you pee or take a dump, or spells of dizziness for no reason, or any of the other signs that *could* be a sign of something major. (They’re probably not, but hey, better safe than sorry, right?)

Of course, you could just blow it off and say there’s no history of skin cancer in your family so you’re probably safe. And you might end up like me. Young (35 when it started), perfectly healthy, exercised a lot, healthy weight, ate right, family history of cancer limited to bowel cancer in a grandparent and lung cancer in an aunt (who smoked 20/day for 30 years) . . . and diagnosed with metastatic melanoma in August, 2009. Since then I’ve had four surgical procedures to remove tumours (long scars on my legs, groin, belly, and under one arm, neuropathy, internal scarring, etc. etc.), I’ve had my brain blasted with radiation (hair falling out, vomiting, confusion, probable early onset of dementia, memory loss, etc. etc.), I’ve developed an ulcer and Barrett’s esophagus from the drugs given to me, and generally my life has been turned upside down and stamped on. Hard.

But if none of that worries you, then go ahead and ignore any changes to your skin. Probably just a freckle anyway. Right?