Amy's Brain

The egg in my head

Update 18: Another one? FFS


“Two-Cancer Amy” that’s what they’ll call me…

A quick start with some good news on the Glioma/Astrocytoma (brain cancer).  Dee and I headed up the road to Liverpool in July for a scan. It’s no fun at all, I got the least nice MRI scanner again which is very small and miserable. I did take my pyjamas this time though so at least I wasn’t cold.  Cut to the important bit… The Surgeon had a quick look at the scans and says he can see no change so that’s as a good as I can reasonably hope for. Next scan will be in February. They’re meant to be every 6 months but I think there might be some classic NHS overstretched issues as they’re coming through every 7.5 months. I’m not sure it matters but it’s a little disconcerting.

Now onto some less good but not all bad news… This week I was diagnosed with a Melanoma (skin cancer). It’s a bit of a tough to write as, in a slightly upsideowny world, it sounds far worse to other people than it does to me. So I’m sorry if that sounds terrible and has come as a shock. I’ll reassure you…

  1. It’s not that bad… I have a grade 1a Melanoma. I think it’s quite funny that yet again I can honestly say… If you had to have a skin cancer, you wouldn’t want a Melanoma (Melanoma is the deadly one) buuuuut… if you had to have a Melanoma then 1a is really the very best one to have and
  2. Unlike my Glioma, this melanoma is actually really unlikely to kill me, melanoma 1a does kill people but only 2% of them – odds I’m reasonably comfortable with
  3. This presents me with some exciting and interesting opportunities. It’s all about the genetics…. my understanding of genetics stuff is still poor so I’m unlikely to explain it well but here goes:
    • MY DNA might be interesting: What’s wrong with me? It seems reasonably likely that I have some freaky gene that has made me susceptible to both. This would be interesting though not terribly useful. I may be able to get some genetic testing, the only upside of this is that if the gene is hereditary then we can check close family members and modify our behaviour slightly to adapt to this risk (e.g. more sun cream, checking skin regularly, being aware of brain tumour risk) and catch any cancers a little earlier. There is a gene identified which predisposes some people to Glioma & Melanoma –  https://www.omim.org/entry/155755   I think it’s actually unlikely as we’re not aware of any other family members having these cancers but these things have to start somewhere I suppose. I may have this but I could just be unlucky. I haven’t done stats, but having 2 primary cancers is really bloody unlucky, especially when one of them is as rare as the astrocytoma
    • The TUMOUR DNA is as separate thing. Something happened to some of my cells and their DNA went haywire and made cancer. I think that’s an explanation of cancer in one sentence. Stupid cancer cells. The particular DNA mutation that made the cancer or is causing the cancer to grow or is stopping the cancer cells from dying is interesting. Lots of the fancy new drugs target specific DNA mutations in specific tumours. I know that my Glioma has a IDH1 mutation. As yet, drugs targeting the IDH1 mutation haven’t been effective but work is ongoing. As discussed previously, the genetic testing of my astrocytoma was definitely on the budget end – they only looked for 2 things IDH (which I do have mutated) and 1p19q (which I don’t have mutated).
    • As yet, I don’t know anything about the DNA of my Melanoma. However, there is an opportunity. It maybe that I can access some treatment on the more “experimental” end of the spectrum.  In particular I’m trying to get the Melanoma tested for BRAF markers as there are some effective drugs targeting this. If the Melanoma has a BRAF thingy then maybe my Glioma has one (a minority of Gliomas do) in which case a BRAF inhibitor (which is signed-off for Melanoma but only had early trials with mixed results on Glioma) might be accessible to me. Probably a long shot but it’s worth looking into.
    • My initial research is throwing up a lot of Melanoma drugs which are being trialled on Glioma so one drug hits 2 cancers feels like a good way to go. Although from a medical perspective chemotherapy is not needed for either in isolation I’m yet to have a talk with an oncologist who’d like to look at my adjusted risk profile. I’m fishing for this and the Dermatology team are taking my notes back to another MDT meeting (MDT meeting is their “cancer chat” sessions, it seems most medics hold these weekly) with my request for someone to look at the 2 together. I think that modern medics are meant to be aware that they are to “treat the patient not the illness” but I’m not quite sure that the reality of this has found its’ way into practice just yet and I don’t know what happens to people with two primary cancers (neither do any of the medical professionals I’ve spoken to!).

I haven’t yet queried the full “Scientific and Medical Advisory Board”(SMAB). I hope you’re reading. Any ideas please email me!? And even if you don’t think you’re on the SMAB and have an idea let me know, there’s always space for new members!

So, what’s next?  I have some more surgery on the skin thing in a couple of weeks, they’re taking another 1cm margin (wide & deep) around where the melanoma was. This won’t be too bad but I’m supposed to refrain from doing much with my body for 2 weeks which is quite a long time if they’re expecting me not to lift Ivy up. I’ll try using the other side. We’ll see how that goes!  I’m also waiting to hear back about some genetic testing and I’m doing a bit of work (ie asking clever people questions) to see what I can or what I should be thinking about regarding genetics of the melanoma and the glioma.

In the meantime, we’ve had lots of fun here at Gwalia. This week I’ve mostly been playing with a digger. It’s the perfect thing – fun and useful!

ps. great news on the fundraising effort, we’re now on a grand total of £32,486.49 thanks to some amazing stuff that my lovely friends have been up to, you can see the latest total here.  I’ve been told the funding is going to this project which is highly relevant. If Dr Brennan can pull this off and work out why, and hopefully find a way of stopping the progression of my cancer to the really nasty one (“malignant transformation”) then that’s actually my best hope by some distance. Timescales might be a bit iffy for me but fingers crossed!


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