From: "Dr. D. Kossove" <doctordee@telkomsa.net>
To: "ruth filous" <rfilous@hotmail.com>
Subject: who to trust
Date: Tuesday, December 02, 2003 11:24 AM

read about Burzynski on 
www.quackwatch.org

I think that this is a useless path to go down.
There is a clinical trial for YEARS  on his stuff, because his followers are so vociferous [and they are ill mannered, too, from what I read on Barrett's site]

These apocryphal stories...  that someone got well from cancer... that abound in the commercial literature, usually occur when:

1. the person was previously treated with standard Western medicine, THEN or AT THE SAME TIME taking Willie's Wonder Pills, Diet,, And/Or Exercise Regimen/Spa stay

2. The person never had cancer in the first place. [More common than you think.  A lot of lumps are not cancer]

3. Criteria for improvement were not  observed reliably.   I.e. the doctors did not have reliable criteria like scan measurements, etc.  So that the "improvement" didn't happen, and the disease progressed anyway.

4. Some cancers regress spontaneously.  Not often.  But still.

5. Theperson felt like crap prior to the intervention, but adjusting nutrition, exercise, controlling pain and giving hope made them feel 1000% better.  

THERE IS A LOT OF NONSENSE OUT THERE.

About Surgical Opinions...

Generally you trust the experts on the job.  FOr surgical operations, that would be an experienced-with-sarcoma oncological surgeon.   For RFA that would be interventional radiologists who are experienced with sarcoma.

My surgeon in South Africa said I was inoperable, and so did all the cardiothoracic surgeons in a regional meeting...   when my case was presented.   Jablons thought I was resectable.  So I went to the US.

{{I don't have your details at hand, Ruth, that is why I want people to use signatures with their details, because there are 600 people on this list, plus several hundred more on some other cancer lists, plus my own patients, and I cannot remember everyone's details.  }}

{{If you would list what you have, where it is and the size and what the oncs think of it, I might have a clue...
but I simply cannot do a n archives search for each person who asks me advice.  PLEASE make a case history signature.  Ro can tell you how to put it on your letter }}

Generally, surgeons give surgical opinions.   Oncologists may have a lot of experience in seeing who gets operated upon, but the surgeon's opinions are the final opinion on whether or not HE will do surgery.  Then you find someone else, if possible, and get their opinion.

THat's why it is nice to have the scans on CD.  You can make copies easily if you or a friend has a CD burner, and you can send the CDs to two or three or 10 surgeons simultaneously.

ALWAYS get a surgical opinion from someone who is VERY oncologicially experienced, especially with sarcomas.   THey need VERY wide margins.

Tell Dr Keohan that you want  a surgical opinion for your sites.  She can give you good names.  If she gives you Valerie Rousch at MSKCC, Rousch [Rusch?] is a first rate thoracic surgeon, but evidently cold cold cold.  Her surgical skills are good, but she is blunt and tells it as SHE sees it.  Which is the surgical option at the time.  You don't go to surgeons for emotional support.    You go to them for cutting.  

You can also ask Dr Keohan whether RFA would be useful for your sites, and ask her whom she would recommend...

And if the surgeons state you are inoperable at present, ask them what would make you operable, which mets must shrink, where...  and would they follow the situaiton with you as you try chemo to shrink tumors.

hug.
hope this helps,
write back if you need more info

doreen






----- Original Message ----- 
From: "ruth filous" <rfilous@hotmail.com>
To: <doctordee@telkomsa.net>
Sent: Tuesday, December 02, 2003 7:40 AM
Subject: Re: dr koehan


slw2103@columbia.edu
burzynski from houston who you mentioned, is he the one that treated a young 
boy w/cancer from tx a while ago in an unconventional way, the boy got 
better and the state or feds - i don't remember - stopped or investigated 
him? can i read his ideas on lms, if he has any.
my biggest dilema is as much as i like to be the master of my domain, it 
does't always work that way.
if an oncologist specifically tells me - whethere its dr anderson who did, 
and what if dr koehan will say the same - that i can't be operated. why 
should i even consider to see a surgeon?
this can work both ways - i will see a surgeon, and he will say that i can 
be opertaed. at some point i do have to trust A doctor, oncolog or a 
surgeon? so who?
i truly hope and believe that dr keohan will direct me in what's good for 
me.
i will keep you informed.
thanks again.
from my heart, ruth



>From: "Dr. D. Kossove" <doctordee@telkomsa.net>
>To: "ruth filous" <rfilous@hotmail.com>
>Subject: Re: dr koehan
>Date: Mon, 1 Dec 2003 16:53:00 -0800
>
>Check for me, please, and give me Sophie's email address
>
>her name is spelled
>
>Keohan
>
>Keo   han
>
>and pronounced
>
>KOE  Han
>
>despite being spelled
>
>Keo  Han
>
>[doreen with major grin on her face.  If THAT doesn't confuse you, I
>can spell it right to left...]
>
>You can ALSO tell her that Dr Anderson recommended her as well.
>
>~~~~~~~~~~`
>Go with a list of questions.
>Get organized.
>Figure the most you will have with her will be an hour.
>Have everything together
>~~~
>Bring her a picture of your family, or of you doing something that you
>like
>so she gets a picture of you outside the clinic room
>
>~~~~~~
>Have a complete medical history by your GP
>and a history of your disease
>and all the path reports and scan reports and op reports etc
>
>~~~~~~~~~~~
>Smile.
>She is a very nice lady, and very caring.
>She, herself, has gotten on the phone and fought the insurance
>companies for drugs for her patients.
>
>But remember, not everyone gets on with everyone else.
>So she may be fine for me but not your cup of tea
>don't worry about it if that happens
>
>But I don't think it will happen.
>Bring someone with you to help with questions in case you can 't think
>well on your feet, or to take notes...
>
>go, and enjoy, and good luck.
>
>warmly,
>doreen
>
>
>
>
>
>
>----- Original Message -----
>From: "ruth filous" <rfilous@hotmail.com>
>To: <doctordee@TELKOMSA.NET>
>Sent: Monday, December 01, 2003 3:14 PM
>
>
>hi doreen. i hope you well. i read all your e-mails and information
>and you
>are really one of a kind. i alo print most of the information. i just
>don't
>want to bother you with my staff.
>this wednesday i have an appointment with dr koehan in columbia.  i am
>goind
>to tell her that you recommend her (and this is the truth. i am goind
>to see
>her because of you). is there anything i should know about her before
>i go?
>gigi is no longer with her. her secretary is sophie.
>by the way, when i told dr anderson that i am going for a second
>opinion she
>suggested dr kohean right away. (she also suggested columbia in
>general as a
>sarcoma center in our area as well as dana faber and mc anderson).
>love and thanks, ruth
>
>_________________________________________________________________
>Set yourself up for fun at home!  Get tips on home entertainment
>equipment,
>video game reviews, and more here.
>http://special.msn.com/home/homeent.armx
>
>
>

_________________________________________________________________
Set yourself up for fun at home!  Get tips on home entertainment equipment, 
video game reviews, and more here.   
http://special.msn.com/home/homeent.armx


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