Dear June,
At least your onc knew about it! We were very disappointed that our first opinion Dr didn't
know that it had been approved for lung cancer -- he said it's only used for the esophagus!
I think Drs should try to keep up with current advances and trials, period...
Your friend, Liz Gioia
-----Original Message-----
From: Argila, June [SMTP:ARGILA@mail.telephonics.com]
Sent: Thursday, July 23, 1998 10:01 AM
To: 'mol-cancer@lists.meds.com'
Subject: [MOL] RE: Liz - Photofrin
Hi Liz:
I asked my onc about this treatment, I have Stage 4 Broncoalveolar and
he said they were using it for early stage lung cancer. Just my 2
cents.
Your friend June
> ----------
> : Donna's Oncologist Appointment
>
> Dear Donna,
>
> I like your plan of action! Your attitude is so refreshing, you are
> so ready to fight and beat this cancer!
>
> I'm feeling really silly asking this and please forgive me if I am
> misunderstanding something, but is this trachea tumor of an unknown
> origin? What kind of cancer cells did they say it was?
>
> Have you visited Oncolink? There are many cancer treatment protocols
> and cancer trials that you search there but I couldn't help without
> knowing what type of cancer it is. Have you given us those details?
> Did Lillian help you with some information? I know she was asking you
> for this information so that she could some research for you... If
> your cancer is of unknown origin, I think they treat it depending on
> the location the metastatic tumor is found, upper or lower body.
>
> With my brother-in-law who has NSCLC, also had a brain tumor and had
> SRS done with X-knife. We were not sure to go with either Gamma-knife
> or X-knife but after reading the literature on both he went with X
> knife. Like Marty had said, one of the determining
> factors with SRS is the precision of the equipment.
>
> I don't know if you've heard of this procedure, but for areas like the
> esophagus they have a procedure called Photodynamic Therapy. They use
> something called Photofrin (sp?) that is absorbed by cancer cells
> only. Then they use a laser that activates the chemical, Photofrin,
> that kills the cancer cells. I really don't know if this even is at
> all applicable, but you can fiind it on Oncolink as well. Its just
> recently been approved for Lung Cancer so we were batting that one
> around too.
>
> Well here's are some links:
>
> http://oncolink.upenn.edu/ (site is a great place to do research on
> treatment)
>
> http://norm28.hsc.usc.edu/USCRadOnc.html (this USC's Radiology
> homepage, see "Gamma knife" and also "What's New")
>
> http://www.radonc.ucla.edu/ROWWW/ROIndex.html (this is UCLA's
> radiology page, see "X-Knife")
>
> http://www.radionics.com/products/srs/xk.shtml (this is Mfr's
> site of "X - knife")
>
> http://oncolink.upenn.edu/clinical_trials/pdt_phase2.html (this
> is the Photodynamic Therapy trial at Penn, info thru Oncolink)
>
> http://oncolink.upenn.edu/tv/fox_pdt.html (this site is a short
> TV blip in PDT)
>
> http://209.41.253.5/pdt@lmrf/ (this is PDT site)
>
> I hope this will help, take care little bear!
>
> Liz
>
> -----Original Message-----
> From: DonnaBind@aol.com [SMTP:DonnaBind@aol.com]
> : [MOL] Oncologist Appointment
>
> What a day! I got to my appointment (finally). When I went to check
> in the
> first words out of the secretary's moth was that my HMO never sent the
> referral. The HMO set this whole thing up. What gives? I had to
> walk to a
> pay phone and call the HMO to have them fax the referral over.
> Anyway....
>
> This is the scoop. I liked this oncologist. He really check me over.
> He is
> certain that it has not spread to brain, liver, etc....by CT scans and
> exam.
> He thinks this was primary but has requested a pelvic CT scan to be
> certain.
> That is the only test he he suggested.
>
> Lowdown.......No surgery (he agreed with Hopkins surgeon). Radiation
> and
> chemo first thing. Along with Taxall and something else. Starting as
> soon as
> next week. He said that I would have trouble swallowing towards the
> 4-5 week
> due to the esophagus being exposed. In fact, in all liklihood I would
> not be
> able to eat solid foods for a few weeks. It would heal itself over
> time.
> Then he explained chemo complications, etc... I explained to him I was
> looking
> into stereotactic radiosurgey. He did not seem positive on that
> however, that
> was the only thing he said that I did not like. Very small chance
> that tumor
> would shrink small enough to be surgically removed. And even then a
> very
> short window of opportunity to remove immediately following radiation
> and
> chemo due to scar tissue build-up after radiation.
>
> Now he did not go there, but I did. What about prognosis? 1 year
> without
> treatment, an additional 6 months to a year with treatment. Although
> he said
> some people go on to live 3-5 years. He asked if I wanted statistics
> and I
> said NO! He said good because he does not believe in them.
>
> My 2 older children are going down to the beach to stay with my
> father(he
> lives there) over the wekend. My husband and our 3 year old will
> join them
> on Sunday. We were only going to stay Sunday and come home Sunday
> evening. I
> have decided to stay until Monday and maybe even Tuesday. Although he
> has
> said next week. I have decided to a) see one more oncologist b) wait
> to hear
> from SIUH about radiosurgery c) check out the University of Virgina d)
> info
> provided by others and last but not least meditate and pray on all of
> this.
> Then and only then do I feel I can make a positive and informed
> decision.
>
> Any information and/or guidance you may be able to offer would be most
> appreciated.
>
> A friend to all of you molers,
>
> Donna
>
>
>
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