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.


Thursday, 19 September 2013

Serious reading- resources found so far on GBM support, treatments, costs, and existing drugs that might also help

Ben and I are getting stuck into looking for additional Treatment sources for GBMs. 

These first two sites give nice, general information about the condition 

http://chriselliottfund.org/patient-support/

http://www.treatingglioblastoma.com/index.htm

Then things start getting heavy.

I can't believe how expensive it is to get treatment in the US http://www.treatingglioblastoma.com/finances.htm

Gliolan at $10,000 for the resection, then $10,000 per month for temozolomide... That's  obscene, and unfair. No wonder medical costs are the greatest form of bankruptcy in thenUS. 

Just under $4000 fo Gliolan wasn't cheap here, but was worth every penny. It should be covered by Medicare for all suitable patients, as it increases the surgical resection, reducing the risk of recurrence. 

Deep breath, not time to get angry about health economics. Or lunatics running the asylum...

We Australians are so lucky to have Medicare and the PBS. the US costs make me wonder if the poor outcomes are related to treatment costs. It would be impossible for some propel to afford the treatments.

We are, of course, going to follow the recommended treatment protocols, but if there are other medications available that will enhance outcomes, we want to consider them.

I'm going to paste the links we've already found here. If you find anything, please email the links to me at fiona.bardenhagen@gmail.com


http://virtualtrials.com/pdf/williams2013.pdf

http://virtualtrials.org/surviveben.cfm

http://www.treatingglioblastoma.com/about.htm

http://www.m.webmd.com/a-to-z-guides/news/20130904/antiviral-drug-may-extend-brain-cancer-survival-researchers-say

http://www.dailymail.co.uk/health/article-2222532/Drug-used-treat-alcohol-addiction-destroy-deadly-brain-tumours.html

http://www.nejm.org/doi/full/10.1056/NEJMc1302145?rss=searchAndBrowse

http://www.allvoices.com/contributed-news/13310250-longer-life-for-brain-cancer-patients-undergoing-repeated-surgeries

http://www.theibta.org/AvastinReview.pdf

but we aren't interested in quackery 
http://www.treatingglioblastoma.com/quack_remedies.htm

This page has links to summaries
http://www.scoop.it/t/glioblastoma-multiform




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