My father has Sino Nasal Undifferentiated Carcinoma.  It is an
extremely rare and extremely aggressive form of cancer.  Due to the
rarity of this cancer, there isn’t a lot of data on the web regarding
protocols for treatment, success cases, cause, or groups of people
with this cancer.

I have hit all the usual spots: google, webmd (and other medical
websites), but I haven’t turned up anything other than the basics.  He
is very sick, and I’d love to get in touch with other people who have
been touched by this to see what can help.

I’m not looking for basic information regarding the disease or how it
functions.

Good answers will receive a tip.

---

Request for Question Clarification by tlspiegel-ga on 16 Sep 2003 14:37 PDT

Hi larryo,

I'm so sorry.  I have some questions for clarification.  

1 - Would you be interested in specific support groups?
2 - If so, where are you located.
3 - Do you have any interest in clinical trials?
4 - Am I correct in assuming you are not interested in treatment?  

I look forward to your response.

Best regards,

tlspiegel

---

Request for Question Clarification by pafalafa-ga on 16 Sep 2003 19:14 PDT

Please visit this list of cancer patient support groups compiled by
the National Cancer Institute:

http://cis.nci.nih.gov/fact/8_1.htm

Perhaps one or more of them could be of use to you, your father and
your family.

All the best.

Pafalafa-ga

---

Clarification of Question by larryo-ga on 17 Sep 2003 07:29 PDT

Tlspiegel,

Thanks for the quick response!  I apologize for not being clearer in
my original question.

To answer your questions:
   1.	Yes.  The Head and Neck cancer support groups that were
suggested are a good start, but I’d really like to find another human
being who is going or has gone through this.
   2.	I am in Minneapolis but most of my family (including my father
and mother) are in Columbus, Ohio.
   3.	YES!!!  So far, we haven’t been able to turn any up, but we are
VERY INTERESTED.  This will be tricky to find due to the rare nature
of this disease.
   4.	No, I am interested in finding anything regarding treatment. 
There really isn’t a protocol from treating SNUC, so if you turn
anything up, I’d love to see it.

I know this has broadened my original question quite a bit, feel free
to contact me if you feel that more time than is justified by the by
the question price.

Regards,
Larry O

---

Clarification of Question by larryo-ga on 17 Sep 2003 07:40 PDT

I really appreciate everything everyone has posted already!  - Larry Odebrecht

---

Request for Question Clarification by tlspiegel-ga on 17 Sep 2003 13:46 PDT

Hi larryo,

Thank you for your clarification.  Hopefully I'll have some more
information for you later today.  I have an appointment in an hour and
as soon as I'm free to continue on your question I'll post my
findings.

Best regards,

tlspiegel

---

Request for Question Clarification by tlspiegel-ga on 17 Sep 2003 15:34 PDT

Hi Larry,

I went through a similar experience many years ago, when my dear
Mother was diagnosed with a rare form of Lung Cancer, and prior to
that when my Father (who was a doctor) was finally diagnosed properly
having ALS.  Once you have a diagnosis, where do you go from there for
treatment, support groups, clinical trials, perhaps personal contact
with one human being who has gone through a similar experience plus
getting specific information.

It can become quite frustrating being lead up path after path that go
nowhere in a hurry.  Then you start all over again.

Of course, your father's physician(s) will have information which
should be pursued.

The first thing I did was call the Cancer Information Service, a
Program of the National Cancer Institute (which provides service in
English or Spanish).  You'll be able to speak to a Cancer information
specialist (press or say 1).  You can reach them Monday - Friday 9am -
4:30 pm,  your local time - it will connect you to a Regional Office.

Their number is 1-800-422-6237  (1-800-4Cancer).  This is a National
Organization which you call for information who will hopefully refer
you to a local chapter for SNUC if it exists.

They provide patient confidentiality, in addition to resources for
clinical trials and treatments with a PDQ (Physicians Data Query) for
para nasal sinus and nasal cavity cancer.  I could easily have had the
lady I talked to provide me with the available information, but as she
suggested it would be best if you called and you'll be provided with
patient confidentiality, and specific questions can be asked and
answered by both of you.

Their number is 1-800-422-6237 (1-800-4Cancer).  This is a National
Organization where you call for information who will hopefully refer
you to a local chapter for SNUC if it exists.

More resources available are: 

1 - Cancer Hope Network who has trained volunteers who have undergone
or recovered from a similar cancer experience.  1-877-467-3638

2 - Cancer Care who will have Oncology social workers available. 
1-800-813-4673

3 - American  Cancer Society who can provide information on support
groups, treatments, clinical trials information.  1-800-227-2345

The easiest way would be for you to make the calls directly so they
can talk to you and ask questions, (in addition to you asking question
from them) and you'll find patient confidentiality, plus your
resources will be more specific than me trying to find out for you.

Online, you can obtain live help using an instant message session with
a cancer information specialist at the National Cancer Institute's
website homepage: http://www.cancer.gov

Scroll down on the right side of the page where you'll see an icon:  A
red question mark and the words LIVE HELP cancer.gov

Click on that and you'll be able to access information Monday - Friday
9am - 10pm ET.

*** Note:  the icon may not be on the right side of the page at the
bottom - because it tends to move around.  :)

I'm at the page now and it's near the bottom above the 'Information en
Espanol icon'.

Larry, I must allow you to be the judge as to whether this answers
your question or not.  Please let me know and I will close (answer)
your question if this is suitable.

Best regards to you and your family,

tlspiegel

---

Clarification of Question by larryo-ga on 19 Sep 2003 09:57 PDT

Did you strike out on the clinical trials piece?  How about any
published treatment guidelines?

Side question: Does google index these pages?

---

Clarification of Question by larryo-ga on 19 Sep 2003 09:59 PDT

For the index: SinoNasal Undifferentiated Carcinoma.

---

Request for Question Clarification by tlspiegel-ga on 19 Sep 2003 12:11 PDT

Hi larryo,

As for any clinical trials going on, the links to the various Cancer
'Societies' would be up-to-date and comprehensive.  They have that
information.  It would be best for you to follow up personally so they
can have a dialogue with you.  I can't possibly answer all the
questions they would need to know and it involves patient
confidentiality.  You'll have access to any information they might
request of you.

They also can point you to published treatment guidelines.  It's best
and more comprehensive for a family member to find out the information
directly.  All I can do is direct your attention to where to go for
answers, primarily because definite guidelines have to be met.

Google has SNUC indexed at:
://www.google.com/search?q=SinoNasal%20Undifferentiated%20Carcinoma

Best of luck to you.

Regards,
tlspiegel

---

Clarification of Question by larryo-ga on 19 Sep 2003 13:20 PDT

Thanks!  Sorry, my question was: "Is google going to index THIS
page?".

I really appreciate your help.  I have pointed my family to this page,
and you have really supplied a lot of information.  Please consider
this question closed.

Hi larryo,

To answer your query about Google indexing this question and answer
(plus comments) - a lot of them are.  As a rule - I can say most times
yes. But there is no guarantee from me on what Google will do.  If you
are concerned, you may write them at:  answers-editors@google.com, and
ask them to not index this page.  However, I cannot answer for them.

You asked for this question to be closed, so I'll post what I wrote
for a clarification in the answer box and that will close the
question.

Again, I want to express my hope for you and your family. 

==============================================================================

The first thing I did was call the Cancer Information Service, a
Program of the National Cancer Institute (which provides service in
English or Spanish).  You'll be able to speak to a Cancer information
specialist (press or say 1).  You can reach them Monday - Friday 9am -
4:30 pm,  your local time - it will connect you to a Regional Office.
 
Their number is 1-800-422-6237  (1-800-4Cancer).  This is a National
Organization which you call for information who will hopefully refer
you to a local chapter for SNUC if it exists.
 
They provide patient confidentiality, in addition to resources for
clinical trials and treatments with a PDQ (Physicians Data Query) for
para nasal sinus and nasal cavity cancer.  I could easily have had the
lady I talked to provide me with the available information, but as she
suggested it would be best if you called and you'll be provided with
patient confidentiality, and specific questions can be asked and
answered by both of you.
 
Their number is 1-800-422-6237 (1-800-4Cancer).  This is a National
Organization where you call for information who will hopefully refer
you to a local chapter for SNUC if it exists.
 
More resources available are:  
 
1 - Cancer Hope Network who has trained volunteers who have undergone
or recovered from a similar cancer experience.  1-877-467-3638
 
2 - Cancer Care who will have Oncology social workers available. 
1-800-813-4673
 
3 - American  Cancer Society who can provide information on support
groups, treatments, clinical trials information.  1-800-227-2345
 
The easiest way would be for you to make the calls directly so they
can talk to you and ask questions, (in addition to you asking question
from them) and you'll find patient confidentiality, plus your
resources will be more specific than me trying to find out for you.
 
Online, you can obtain live help using an instant message session with
a cancer information specialist at the National Cancer Institute's
website homepage: http://www.cancer.gov
 
Scroll down on the right side of the page where you'll see an icon:  A
red question mark and the words LIVE HELP cancer.gov
 
Click on that and you'll be able to access information Monday - Friday
9am - 10pm ET.
 
*** Note:  the icon may not be on the right side of the page at the
bottom - because it tends to move around.  :)
 
I'm at the page now and it's near the bottom above the 'Information en
Espanol icon'.
 

Google search:

Sino Nasal Undifferentiated Carcinoma
Head and Neck Cancer treatments clinical trials support groups
information

Best regards,
tlspiegel

Great answer, but he never told me if his answer was going to be indexed.

Since the condition is so rare that it likley (or apparently) doesn't
have a large support network of it's own, I highly recommend that you
search for:

Head and Neck Cancer Support Group

You will find a multitude of support groups for those suffering from
various kinds of cancer including perhaps some forms of
Undifferentiated Carcinomas. Again, because the condition is so rare
those in need of support may be widely scattered among many groups and
may often find "themselves" the only one suffering from the disease in
their groups as well. They may be thrilled (relatively speaking of
course) that you are interested in joining in their discussions.

Regards;
tutuzdad-ga

Hello -

Sorry to hear of your situation!

The most promising medical approach for cancer treatments -- indeed,
most all diseases -- is in the stimulation of the body's immune
system.  There are alternative homeopathic regiments you can take to
strengthen the body's immune system, but it is very difficult,
sacrificial, and requires an extreme amount of devotion.

There was another question posted on here recently that addresses a
brand new medical technique used in the stimulation of the immune
system, which is looking good for cancer treatment.

Here is the link:

http://answers.google.com/answers/threadview?id=251346

... you may wish to pursue investigating trials for this new technique
by contacting some of those hospitals listed in the article(s).

Hi larryo,

Why not check out the following pages...


http://www.cancercare.org/HeadandNeckCancer/HeadandNeckCancermain.cfm

http://www.ucdmc.ucdavis.edu/synthesis/Archives/fall98/patients/patients_5.html

And a list of sites at the following Google Page:
://www.google.com/search?q=head+and+neck+Cancer+support+groups&btnG=Google+Search&hl=en&lr=&ie=ISO-8859-1

tlspiegel

You or another researcher might check into IMRT.  

http://www.asco.org/ac/1,1003,_12-002490-00_18-002003-00_19-00101831-00_29-00A,00.asp?cat=Head+and+Neck+Cancer

Hi larryo,
 
Thank you for the tip. :) 
 
All researchers work as independent contractors for Google Answers. 
What Google will do or not do regarding indexing certain questions
posted at Google Answers is beyond our knowledge or control.  I can't
possibly say yes it will be indexed or no it won't. It's not our call.
 
But, you do have the option of asking the editors if it will be or
not.  They will reply to you and you can set up a dialogue with them
about your concerns.  If you want it to be indexed, then ask. 
Similarly if you don't - also ask.  (I can guarantee a response from
the editors!)
 
No researcher would be able to answer your indexing query, but the
editors can.
 
Again, I'm very sorry about your dad.  
 
Best regards,
tlspiegel (a female!)

I wasn't able to locate a specific trial for SNUC but your dad may
qualify for one of the head/neck trials.  It would depend on what
treatment he's received so far and tumor extension.
http://www.centerwatch.com/patient/studies/cat161.html

This Q&A from Medscape references a Duke regimen of hyperfractionated
radiation concurrent with cisplatin and 5-fluorouracil (5-FU):
http://tinyurl.com/nyvz

Sinonasal undifferentiated carcinoma: the search for a better outcome.
These results from University of Virginia evaluate chemoradiotherapy
followed by craniofacial resection:
http://www.oncolink.upenn.edu/types/article.cfm?c=7&s=23&ss=184&id=8360

Rare Cancer Alliance:
http://www.rare-cancer.org/index.html

As for this question/page being indexed by Google's search engine, the
researchers have no way of knowing which answers will qualify for
indexing.  Since there is so little information out there on SNUC,
hopefully it will.

The page will appear at Google Answers for viewing through this URL
indefinitely:
http://answers.google.com/answers/threadview?id=257400

Another way to access this page is through Google Answers main page:
http://answers.google.com/answers/main

Where it says "Search Google Answers for," you can type in the number
of your question (257400) or the word 'sinonasal.'

The search feature of Google Answers works similarly to Google's
search engine.  If you want to search a particular phrase, put
quotation marks around it, i.e., "sinonasal undifferentiated cancer."

Hope this is helpful and best of luck to your family.
V