Background and overview

I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.

My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.

If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.


Wednesday, 25 December 2013

Is Human cytomegalovirus (HCMV) the reason why I got two primarycancers in one year?

18 December 2013

I'm feeling much better after Tuesday's blood transfusion. It helps that the boys are on holiday - I have slept in until 930 yesterday and today, and they've played happily together.

I've been doing a little research this afternoon, and found some articles which propose a viral link with breast cancer and GBMs, and one which claims to refute it.

http://www.infectagentscancer.com/content/8/1/32

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0056795

http://sciencenordic.com/virus-link-ruled-out-breast-cancer-and-brain-tumours

The authors of one of the studies suggesting a link betwwen CMV  and GBMs say that the type of histopathological analysis done is more important than analysing DNA sequences.

This article talks about how some but  not all GBMs are linked with CMV
http://neuro-oncology.oxfordjournals.org/content/early/2012/02/08/neuonc.nor227.full

Here's a highly technical article that basically says that CMV is implicated in GBMs, and that CMV- targeted therapies might help.
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0068176#s4

And this article suggests that targeted T-cell therapies might also help (at least that's what I think it says) 
http://www.nature.com/icb/journal/v90/n9/full/icb201219a.html?WT.mc_id=TOC_ICB_1311_award

Correlation does not mean causation, so just because lots of people with GBM were found to have CMV, it doesn't mean that CMV causes it. However, if a treatment for CMV (namely Valcyte) improves outcomes for people with GBM, then a causal link looks more likely.

I haven't found anything on Valcyte and breast cancer, only warnings that Valcyte can cause cancer and shouldn't be used in people with bone marrow problems, or who are breast feeding. Why can't there be an effective and innocuous drug to treat cancer? I'm going to try to work out how to do the ketogenic diet properly, it seems to be the safest option, both as an adjunct to conventional therapy, and as a backup in case the conventionals don't work for me.