Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Chemo for gliomas

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.

Sunday, 8 September 2013

Chemo for gliomas

IWe didn't realise that chemo drugs don't pass over the blood-brain barrier. (A crafty bodily mechanism designed to protect the brain from toxins).

I also didn't know that there was a chemotherapy available for gliomas, in tablet form. I've had a niggling interest in learning more about cancer, and brain tumours, for years. Was it my intuition again? And were my recurrent sinus headaches actually a sign of the glioma? I started to get them in 1996. I had a normal MRI scan in 2001 of so, when I went as a control in one of the fMRI studies at st Vincent's, but fMRI doesn't use contrast, and may not have detected an early lesion - was there something growing there all this time?

No point worrying about the past.

"Yesterday's history, tomorrow's a mystery, right now is all that matters. That's why its called the present -it's a gift"

I think that trite little rhyme is from some kids book, but it works for me right now.

I've been doing some reading, on conventional and complimentary therapies.

I'm already craving and enjoying great varieties of vegetables and fruit, and shying away from sugar and gluten. I'd started taking flaxseed oil and yoghurt, and was going to get onto coenzyme Q10, magnesium, and a whole lot of other supplements that are supposed to help with recovery. Walking outside and breathing in the beautiful air, and connecting more with people, are also on the menu.

I'm going to beat this second, sneaky opponent. I just so glad it wasn't on my left, my language would have been impaired, and it would be hard to talk to you now

From the treatment perspective.

This looks promising

http://scienceblog.cancerresearchuk.org/2013/07/18/the-story-of-temozolomide/

And this is technical:

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individualdrugs/Temozolomide.aspx