Thank you Peter, all I was asking was for some insight into at least
which tree I should be barking up. I cannot get an oncologist to help me
sift through the literaly 100s of clinical trials out there even though
he says they are my best chance. There are no counselors or professional
advisors on the subject of clinical trials and in florida oncs are too
overloaded with patients and trips to the bank to be bothered with
someone who really wants to live.
I contacted emergingmed.com and they sent me 150 emails of trials that
either all look alike to me or speak in terms that sound like greek to
me. How any layperson can arrive at a comforable decision about a
clinical trial is beyond me. I probably won't take one for that reason
alone that I can't make heads or tails out of this stuff and no one will
help me. Our hospital has a lady who's job is supposed to be helping
match up paients with trials. All she did was go to the same website I
did, print them out and mail them to me.
I've heard many in my accor colon cancer group say they are doing well
with avastin and herbitux together. When I ask this moron of an onc
about that he says it's not allowed, would have to be a trial setting,
yet none of the folks That I spoke to who are receiving it are in a
trial. I have freinds up north that have received interperitonial (ip)
chemo for my type cancer, one who is now ned. When I ask dr. doom he
says again not allowed, only used for ovarian cancer. so are northern
oncs ignoring laws or are southern oncs just so busy they don't read up
on new methods?
I listed several chemicals and methods of treatment trials that I had
narrowed it down to and was simply hoping someone who was familiar with
them might sorta tell me which may be more promising. So far almost
anyone I've met who has beaten their cancer has done so via a clinical
trial which tells me that probably standard 1st & 2nd line chemo is a
waste of time and a whole lot of money. I sort of thought perhaps the
gene or immune therapy line of treatment might be a better bet but I
don't know what results are being had with newer chemicals.
I completely changed my lfestyle did a 360 degree turn around on diet,
been invstigating nearly every alternative that sounded plausable/ I was
a chainsmokin alchy. now I don't touch either one, don't even drink
sodas. i don't eat junk or sugar, limited meats, take suppliments and no
matter what I do the CEA just keeps giong up. It only started gong down
once when they added avastin and was drooping nicely but my liver & bone
marrow started crapping out, the dosage was reduced and it stopped
working.
The back pain just started a couple of months ago right at the tip of my
tailbone is causing me agonizing pain even to just lightly touch it.
can't sit long or lay on my back anymore. Back in april or may when they
did the one and only pet scan that was ever done on me, the base of the
spine lit up. they did mri on it and said it was no tumor there just
degenerative stuff. I gotta get it checked again once I'm off chemo
holiday, My onc doesn't want to see me for at least 3 months, not even a
blood test let alone a back xray. maybe there was cancer there just not
formed to visible tumor yet. I've been off chemo for 3 months nearly
and still can't shake the diahrea no matter what I take for it. and my
abdomen has had mystery pains and strange sesations for last 6 months,
in fact not long ago the cat scan said there was a recurrance tumor at
the stump where old tumor was resected, they checked it 30 days later
and now say it's not there.
Contrary to steph's beleif people have beaten terminal cancer, I'm not
stupid, I know that it's a slim chance that I'll be one of them that do
but if I give up hope as he says do, I may as well just blow my brains
out and get it over with. I guess I don't accept or want to hear the
truth, I want at least some hope, otherwise I know I won't survive. I
get really mad when he posts those "sorry but yours is incurable so just
go live till you drop dead posts" It did not help me nor did it offer
any answers to my question. If you aint got something constructive to
contribute, keep it to yourself. I got enough doctors of doom here I
don't need more. I'm thinkin of moving to oregon because doctor assisted
euthanasia is legal there and I do not want to lay in a hospice bed in
diapers rotting and wasting away, doped up to where I'm in a coma. that
is NOT a humane way to die.
Group: sci.med.diseases.cancer Date: Thu, Nov 23, 2006, 12:52pm (EST-3)
From:
pmoran@bordernet.com.au (PM) wrote:
Steph lacks tact (sorry, Steph!) but it might help you answer your own
question if you clarified what it is that you want or expect. The
symptoms that you describe are not obviously due to the cancer in
someone who has had your kind of surgery and possibly has separate
spinal problems (?). So Steph may yet be right that you may not gain
symptomatically from any additional treatment at present (unless
radiotherapy to a spinal secondary was an option, but that presumably
would have been suggested if that was a possibility).
We can also be fairly certain that most of the trials being performed on
newer agents will produce only marginal gains in lengths of survival and
quality of life for the subjects, if at all.
What you probably desire is something more spectacular than that --
something that has some chance of curing you. Like Steph, I don't
know of anything on the horizon that has shown such promise in
preliminary trials, but keep looking around. You have some time..
If that is what you want/expect, in your shoes I probably would not be
looking at any newer chemotherapeutic agents or combinations thereof,
because they will almost certainly produce only marginal gains. They
are an essential part of medicine's desire to contantly do better, but
the prospects are not great for them producing curative regimes for your
kind of problem.
I would look at more novel treatments, ones based upon newer
immunological or gene therapies or other novel approaches. I have no
evidence that they will produce more spectacular results, merely the
expectation that any major advances are more likely to come from newer
methods. Understand that the chances remain slim and with novel
treatments the risks may be even greater than with the usual
chemotherapy.
Peter Moran
www.cancerwatcher.com
Re: Need advice on clinical trials
Group: sci.med.diseases.cancer Date: Thu, Nov 23, 2006, 4:02pm (EST+5)
From:
steph@vancouvers.island (Steph) wrote:
Do you post here hoping to hear fairy tales or the truth? There is the
world as we wish it was, and the world as it is. I'm not suggesting
anything other than you get on with your life.
Group: sci.med.diseases.cancer Date: Thu, Nov 23, 2006, 5:12am (EST+5)
From:
steph@vancouvers.island (Steph) wrote:
First of all, unfortunately your cancer isn't curable. Second, if your
cancer isn't curable, taking chemotherapy or any other treatment if you
have no symptoms is very unlikely to improve your quality of life.
Third, the reasons trials exist is that we don't now if any of these
drugs are better than others, or better or worse than none at
all............
