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.


Friday, 11 October 2013

September 2013: A very lucky month to be diagnosed with GBM (if there ever was one).

Timing seems to be on my side again. Last month, when my brain tumours were discovered and removed, the second of  two articles were published showing dramatically increased survival times for people with GBM who take Valcyte, a treatment for Cytomegalovirus (CMV).


This first article sums it up in plain language,
http://medicalletter.wordpress.com/2013/09/12/valganciclovir-for-glioblastoma/

My rad onc thinks the studies are very promising, and was happy to write a script for me yesterday. I've started taking Valcylte at lunchtime today. We're hitting it with everything we can -  the dietary changes I've made (cutting out fructose, refined carbs, and other inflammatory sources, , more omega-3s, nuts, and seeds, good fats (butter, coconut, avocado) and protein I'm also taking daily vitamin and mineral supplements and some herbal remedies (double checked now by neurosurgeon, rad onc, and two pharmacists). I just hope that by boosting my nutritional intake, I'll get through the 7 days/week of Temodal chemotherapy for the 7 weeks of combined radiation and chemotherapy. I have to have blood tests each week, there is a risk of deep vein thrombosis and pulmonary embolism, so I need to keep active (walking up and down the stairs once a day is a strain, but I'm trying to do it), but not overdo it.

The Temodal causes a couple of waves of nausea each day, but a quick sniff of eucalyptus orondansetron seems to fix it (though I can only take ondansetron every 8 hours). I haven't vomited since Monday morning, when I took the Temodal without a prior antiemetic (anti-vomiting) drug, and the major side effects seem to be a mounting then suddenly draining fatigue, where it feels like I've either been hit by a tsunami, or that my energy is a bathtub of water that has suddenly drained away. I can fight it, but eventually have to like down, feeling weak and floppy in my arms, and try to quiet my monkey mind, which is chattering happily now that UncleVernon and Aunt Petunia are gone. Uncle Vernon was a restricting and misery-inducing companion, and I feel happier and more like myself than I have in years. I'm preparing a post about my cognitive testing results from 1983 and 2009 that should have warned me there was something amiss,  along with my intuition, that was telling me to learn about brain tumours and cancer, even though I hardly ever saw any. That post it should be up next week.


I am so grateful for all that I have - I keep finding beautiful things that people have given to me over the years, squirrelled away for safekeeping. I'm bringing them out into the light and putting them on mantles and windowsills, and feeling the love of the people who gave them. Why hold on to things for "best" occasions? Every occasion should be one to rejoice in life's blessings, or to delight in the love and generosity of others.

I am also keenly aware of things that I have bought just because I could, not because I needed to, but because it somehow filled a need that wasn't being filled in my life. Things bought out of gluttony and greed. Things stored out of a sense of guilt at having spent so much on a garment (I still have my c.1990 $14,000 per annum  PhD scholarship as my basic wage in my head, so anything over $40 feels expensive to me, but it's been something I've had to live with, as  I've found very few professional garments that appeal to me for less than that, and neuropsychologists don't wear allied health uniforms).

I am packing up things that I bought for the wrong reasons, or have hoarded because I couldn't bear to part with them, (they cost so much and are still in good order - Mum and Grandma's Great Depression mentality), and giving them away with love to family and friends. I was going to do it this spring anyway. It feels so good to be clearing this energy and sharing my possessions with people I love. Collecting and hoarding things doesn't feel so good.


For those of you into reading abstracts and thinking about effect sizes and statistics, I'll provide some nitty-grtty things here. So if you're not into scientific abstracts, you can stop reading now.
xxx



There's probably more on the web, but I'm delighted enough with these two sources to devote my blogging energy to them today. I have a DVD to watch with the boys, and a free TSO ticket to enjoy tonight.

Here's the publication details and abstract of the first articles, published in March this year:


 2013 Sep 1;133(5):1204-13. doi: 10.1002/ijc.28111. Epub 2013 Mar 13.

Effects of valganciclovir as an add-on therapy in patients with cytomegalovirus-positive glioblastoma: a randomized, double-blind, hypothesis-generating study.

Stragliotto G, Rahbar A, Solberg NW, Lilja A, Taher C, Orrego A, Bjurman B, Tammik C, Skarman P, Peredo I, Söderberg-Nauclér C.

Source

Department of Neurology, Karolinska University Hospital, Sweden.

Abstract

Cytomegalovirus is highly prevalent in glioblastomas. In 2006, we initiated a randomized, double-blind, placebo-controlled, hypothesis-generating study to examine the safety and potential efficacy of Valganciclovir as an add-on therapy for glioblastoma. Forty-two glioblastoma patients were randomized in double-blind fashion to receive Valganciclovir or placebo in addition to standard therapy for 6 months. Magnetic resonance images were obtained before and immediately and 3 and 6 months after surgery to evaluate treatment efficacy by measuring contrast enhancing tumor volume (primary end point). Survival data were analyzed for patients and controls in explorative analyses to aid the design of future randomized trials. Trends but no significant differences were observed in tumor volumes in Valganciclovir and placebo patients at 3 (3.58 vs. 7.44 cm3, respectively, p = 0.2881) and 6 (3.31 vs. 13.75 cm3, p = 0.2120) months. Median overall survival (OS) was similar in both groups (17.9 vs. 17.4 months, p = 0.430). Patients could take Valganciclovir for compassionate use after the study phase. Explorative analyses showed an OS of 24.1 months (95% CI, 17.4-40.3) in patients receiving >6 months of Valganciclovir (Val > 6M) versus 13.1 months (95% CI, 7.9-17.7, p < 0.0001) in patients receiving Valganciclovir for 0 or <6 months, and 13.7 months (95% CI, 6.9-17.3, p = 0.0031) in contemporary controls. OS at 4 years was 27.3% in Val>6M patients versus 5.9% in controls (p = 0.0466). Prolonged OS in Val>6M patients suggest that future randomized trials are warranted and should evaluate whether continuous antiviral treatment can improve outcome in glioblastoma patients.


I particularly like the OS at 4 years for Val>6M vs controls. Greater than 25% is even better odds than 5.9%.

Then the second publication comes from the same group, who followed the patients over 5 years. The 25 patients who had received continuous CMV treatment had a median overall survival of 56.4 months (or 4.8 years, p<.001 - nice large effect size for a small sample!). Much better than the median survival for placebo.


You can read the NEJM  letter here (I haven't cut and pasted the text because that would be in breach of copyright, and I'm not going to be naughty like that. I may have had a brain tumour, but I still know what is right and what is wrong)

http://www.nejm.org/doi/pdf/10.1056/NEJMc1302145


I don't like the fact that there were no patients at risk in either the <6 month or continuous groups at 72 months after diagnoses, but we're talking about very small samples here. So if there 1/5000 people with GBM live for decades or more, and if Valcyte improves longer term survival, and I'm in a reasonably good group from my gender, age <60, and health status, then adding Valcyte to my at times ovewhelming number of medications is worth it.

I've started taking it at lunchtime today, and am crossing my fingers that I won't get any side-effects. It isn't cheap, but my rad onc has applied to the manufacturer for them to give it to me at a reduced price on compassionate grounds, which has been provided to other GBM patients recently. There are also state subsidy schemes, and I may be able to claim from my private health insurance. We get so much of our healthcare for free, this is cheap compared to the cost of chemotherapy in the U.S.A., where medical expenses account for more than 50% of bankruptcies. It's lucky I'm getting monthly payments from my income protection insurance which will cover it if we can't get anything back, and it's very lucky that we're in a position to afford it. We think it's money well-spent.





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