wolfgang

Hi group:

Holy crap, I've been away for a few weeks and return to find the group
under attack. Sheesh. What kind of lame blanketyblank spams a cancer
support group?


Things are not looking so very good. Last meeting indicated that if
Chemo #9 does not begin to shrink the primary tumor, they aren't doing
any more High Dose MTX therapy.

They mentioned "other chemo" and radiation. The mother in law doesn't
want radiation due to the high incidence of dimentia and loss of
function.

Not particularly wanting to wait two more weeks to find out what those
"other chemo" options are... Can any of you provide insight as to
what chemo is typically offered for Primary CNS Lymphoma patients when
High Dose Methatrexate fails?

Anyone have a link to info regarding the probable side effects of
whole brain radiation? I don't really want her to take radiation
either, but more than that I want her to make an informed decision,
not simply parrotting the advice of her sister or children. It is
fine if she doesn't want to do it, I just want to be sure it is
actually what she wants knowing all the facts.

Regards,

Ron

j

http://149.142.114.117/old_radonc/1Clinical/Clinical%20Trials/clinical_trials.htm

Whole brain irradiation causes hair loss and fatigue in the short term.
Long term effects are unclear but some researchers believe it may effect
clarity of thought or memory. Some studies are trying to assess the use of
whole brain radiation by assigning patients to have or not have this
treatment on a random basis. However, many patients prefer to choose their
treatment options.

We have a study for patients who choose not to have whole brain
irradiation. The study has a careful design of regular followup with 3
monthly MRI scans and clinic visits. From this study we hope to learn who
benefits from this approach and if there are patients who would be better
off choosing whole brain radiation.

ASCO 2002 Selected Abstracts
.... at diagnosis | How to Help | Research Side Effects | Support | Tests &
.... CNS: Chemotherapy
+/- whole-brain irradiation (WBI) for primary CNS lymphoma (PCNSL ...
http://www.lymphomation.org/tx-asco.htm
I get an error when I try to open the ASCO links on that page, maybe
they'll open for you?

the other lady (mentioned earlier) has moved on to bone marrow and stem
cell?
J

steph

Radiation, like chemo or any other treatment, has side-effects.
The issue is whether the potential for harm from the treatment is less than
the potential for harm from the tumour if untreated.
Only your (radiation) oncologist would know that

wolfgang

I get the impression that you folks in this group are remarkably well
focused on real curative treatments and knowledgable on the
'snake-oil' sales.

My sister in law is pushing for a $20,000 plus treatment in Canada
that involves trying to boost the immune system so that it attacks the
cancer.

My BS detector is going off. Perhaps boosting the immune system is a
bad idea if the immune system cells are the ones running rampant?
Lymphocytes? As in, don't feed them?

I'm most skeptical as I haven't seen any results of clinical trials.
As they say at work, in god we trust - all others bring data.

If anyone knows of resources for debunking and/or evaluating
alternative therapies...


(to be honest, my view is that if the patient feels better by
sacrificing a chicken and rubbing a turnip on her elbow, let her. I
just don't want to see her wasting valuable time pursuing bogus
treatments that cost a lot of money that she doesn't have.)

j

Perhaps the harm is causing false hope and/or permitting people to continue to
not make difficult/practical decisions?
You could try a phone number here
http://www.plwc.org/plwc/Shared/plwc_ArticleViewPrint/1,1890,30480,00.html if
they've heard of the treatment you are referring to.

Ditto http://www.quackwatch.org
Someone posted earlier, claiming to be a doctor with connection to the above and
asking for e-mails.
He did not respond to my request about his credentials. (which is in the Charter
to protect you all from quacks, strangely enough). So you're on your own on
that...
http://tinyurl.com/uo5r
J

wolfgang

Thank you!

j

Me too.
In fact, snake oil people could be setting up shop up here without our having
heard about it yet.
Is there a hospital name or institute?
J

j

anything mentioned here?
http://www.bccancer.bc.ca/PPI/UnconventionalTherapies/ImmunoaugmentativeTherapy.htm
J