Dear Everybody!
Today marks the 10-year anniversary of the very aggressive surgery prof
Andrew Kaye did on me back in 1999 at Royal Melbourne, down under.

Everything has worked out very well!
And YOU have played a central part in this course of events by being a part
of the all-important BT-lists.



I today met my oncologist (Dr Bergstrom) to review the latest scans. No
signs of anything disturbing! We celebrated the occasion with a fab cake,
rich in dark chocolate and strong coffee.
Not worried about the copper content anymore - good riddance of that!

My pal the radiologist even threw in an extra MR-spect for the occasion.
I'll get a nice tęte-a-tęte with him next week.

As you may recall, I did receive a combination therapy of fractionated PDT
along with PDD-augmented surgery in Dundee, Scotland, for a minor
recurrence Dec 2006. That combo was also enhanced by including Poly-ICLC
in the mix. (The fine Dundee experience is documented with pictures on a
blog: http://blueberrynews.blogspot.com/ )

More good news: me and my wife Nadia are having a baby girl in early August!

I also greatly enjoy life in general and playing my new trumpet and
flugelhorn in particular!


So just wishing to share the good news with y'all.
And again, THANK YOU SO MUCH!!

On treatments, well, yes there were a few...
Starting off on March 30th 1999, I got some "very aggressive" surgery
removing a tumor the size of an orange. "Very aggressive" coming from Mr
Kaye means just that.
We moved back to Sweden and I got a standard 56 Gy of radiotherapy May ´99,
presented my D.Sc seminar on a day off, and then me and Nadia got married on
June 4th. I did what I could to augment the radiotherapy.
Turned out that my (now late) grandfather could assist me with a sauna en
route to the radiotherapy. I put on all my warmest clothes and dashed off on
my bike, got into the sauna and did deep breathing (fully clothed) and
rushed off to be just in time for the session.
The idea - hyperthermia to make the radiation "bite" better. It surely made
quite an impression on my doc who always saw me coming exactly on time, red
in the face and all sweaty and wet. Once there was a delay and I went
running up and down some stairs until I could get into the thing.

Then I started the gold standard of the time PCV and did 2 rounds, but
eventually got a terrible allergic response to the "P" (on my actual
birthday). Did not sleep for 70+ hours. Getting that reaction turned out to
be a blessing in good disguise.
It sort of snapped me back on track, and I hit the computer ready to
research this brain tumor stuff.
Created an email account at email.com - and signed up for all the lists I
could find.
Within a week I found a study that I could join, and I managed to get Randy
Merchant to fly in to Stockholm (I managed to pay his travel from a research
grant). A quick interview at the airport and I was included in a Poly-ICLC
study. Timing was perfect.
Their trial was suspended like 3 days after my inclusion due to slack
administration. But I was in, and the drug was shipped shortly after. Still,
it got caugth in customs. Not good. Very very bad. So for a year I had to
have the stuff sent to me as "electrolytes for battery research". That did
the trick. And then the Swedish equivalent of the FDA approved my use of it.
I've used Poly-ICLC on/off ever since Randy Merchant and Andres Salazar
took me in under their wings back in early 2000. For a brief period I
actually made my own, but never had to use it - I got a new stash just in
time after my trial was ended.

While doing the pICLC I also pursued accutane, alphacalcidol (etalpha) and
penicillamine (a copper chelating drug) in various complex combinations. The
penicillamine was no great success, it only pushed my red blood counts way
down.
Accutane was OK, just lowered the dose a little to avoid nose bleeds.
Etalpha gave me no problems whatsoever.

And there was green tea, melatonin, etc etc

I also did a lot of "mental stuff" - visualizations, and deep
relaxation/meditation daily.

With time it got too time consuming to keep up with the cutting edge. And I
got complacent. My plan B was to get in contact with Paul Zeltzer then at
Cedars sinai (Ca, USA) in case of a recurrence.
When stuff finally felt really good and me and Nadia decided that the danger
was over, there was a minor recurrence in late 2006. Plan B failed
miserably. Zeltzer had moved on, and all the other leads I had followed
turned out to be air. So I redid it all.
And I found the arguably coolest treatment around. PDT with PDD-augmented
surgery! Great stuff. Also strongly recommended by my first surgeon Andrew
Kaye (he had just published 2 review papers back-to-back in August 2006).
So I got in contact with Dundee - and a good contact that was! But this time
I could come in for surgery better prepared. No double big Mac & Co the
evening before... (Australian steroids...)

And this worked like a charm. I got permission to enhance the PDT with some
Poly-ICLC. I tapered off the steroids VERY quickly using
ginger/turmeric/nettles/black pepper/bromelain/boswellic acid along with
fish oil and Celebrex.
For good measure I did a full course of TMZ ,6*(21/7), afterwards as well.
And during that I cooked up some DCA and tried along with a ketogenic diet.
Probably good, but not possible to keep up for long while on TMZ. The first
TMZ round I actually took while tilted head-down for about 2 hours. (Of
course, in order to maximize drug exposure in the brain.) I also used
L-arginine to that end (enhances cerebral blood flow). But since I looked
like an alien for several hours afterwards, Nadia told me to stop doing
that. And there was all that research into circadian rhythms and timing of
chemo. I decided that 20:00 (8pm) be the optimal time to minimize side
effects (due to fluctuations in WBC and related mitosis) - also the "most
effective time" to do chemo usually is the same as when side effects are
minimized. (Assuming normal uptake and decay of TMZ with half life ca 2h). I
think many old posts (say, January 2007) back and forth on these lists are
still in archives.


Anyway, now all is clean and looks just fine. No word on the latest spec
yet, but no real target to investigate either.

If there is anything to be learnt from the above, it may be this:

I think it is very important to do something (ANYTHING) a bit differently
than standard protocols dictate.
It gives a certain satisfaction - "At least I did that with a twist", in
case there come reports of poor general response to whatever.


All the best and again THANK YOU!


--
Cheers,

Andrew Yassin
(http://blueberrynews.blogspot.com/)

Note - I'm not a medical doctor, just a lowly scientist dedicated to
studying stuff in general.
But with a history of more glial cells than Einstein ever could dream of ;).


Anamnesis:
Previously addicted to soulless aggrandizement of self thru academia.
Eventually grew a brain tumor...

Dx: Oligo WHO3 Mar-1999 (6cm, right frontal): LOH 1p 19q; sx + rx + PCV
(stopped - allergy); Poly-ICLC start Jan-2000; Accutane and Alfacalcidol
on/off.

Reccurence Oct 2006; PDD/PDT Dec 2006
Jan 2007 Cimetidine 2*400mg
TMZ 21+7 at 75mg/m2 six rounds started Jan 29th 2007. Finished July 5th
2007.

Supplements: various - including; Selenium; LEF-mix; Curcumin; digestive
enzymes, Blueberries,

I brew a mean Kombucha (www.kombucha.de)

Note: I do NOT read the big list - if you reply to my posts from there -
please do so directly to me also! Also, it is NEVER a personal snub. I just
very seldom check this email.


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