Many patients with carcinoid live many years.......I've given up predicting.

Hello and welcome Mike.
I've posted some links about carcinoid.
Everyone who hears the word "cancer" thinks "chemo, but some cancers may not be
receptible to chemo.
Be sure you ask the right questions about chemo, because some websites say that
carcinoid is chemo-resistant and the cure is surgery/liver resection or
replacement if/when the liver gets too involved (and if there's no mets), so if
true, plan ahead and get information about liver replacement and ona list for
future purposes is what I'd do.
Before they gave me chemo, I'd want to confirm that that's still true.
I would like to point you to http://www.acor.org/mailing.html but their server
is down at the moment, so I've been unable to verify if there's a carcinoid
group there.

You have time since apparently it's slow growing.
Keep in touch as you are able.
Best,
J

mjf@mchsi.com said...

My aunt had that.  In her case it was a secondary cancer with
occult primary and since my uncle refused permission for an
autopsy the primary was never found.  She lived for about a
year after diagnosis, but the diagnosis came rather late
because her GP thought it was something else instead.  It's
possible that had she had the diagnosis earlier things might
have been different.  This was about 4-5 years ago - there
were new(?) drugs being used at the time; I think Sandostatin
was one such.  There may well have been developments and
improvements since then.

Dear Mike

I have had Carcinoid Cancer of the Stomach twice since 2000.  and while I
have not been given a definitive timeline from a Dr., I understand what you
are going through.  I would strongly suggest that you contact the National
Carcinoid Foundation in NY.  www.carcinoid.org and seek out a second
opinion.

They gave me some contact information with Specialist who deal specifically
with Carcinoid Cancers.  Due to it being a very rare type, slow growing
cancer (about 5 out of every 1,000,000 diagnosed each year), there is still
hope!!!  New options and treatments are showing up all the time allowing for
quality extended life and, dare I say, to be Cancer Free.

I do not know where you live, but they can help.  So, get a second opinion.
You will also find that while there are few of us, there are online support
groups and probably support groups in your area.

Last, but not least, the American Cancer Society, www.cancer.org, or toll
free number: 888-227-5445 can help you with a lot of good information.  I
recently contacted them about how to deal with you wife and kids (ages 14 &
12), family and friends,  who have questions and feel helpless to excercise
and healthy eating for this type of cancer.  They were really kind,
supportive and helpful.

Don't give up!!!  Just becuase a Dr. tells you you have a short time to live
doesn't mean that has to be that way.  Get a second opinion from a
Endocrinology Oncologist who specializes in Carcinoid Cancer.  I live in NW
Pennsylvania which is very rural, I see my local Oncologist but also travel
to Hershey Medical Center (just east of Harrisburg, PA)  to see a
Endocrinology Oncologist who was recommended by the Carcinoid Foundation.
It takes me 5 hours to get there, but worth the travel.  They were even able
to get me inexpensive lodging for my family and I at the Hope Lodge, which I
understand is a National Organizaiton that helps Cancer Patients traveling
long see specialists.  Its about $16.00 a night.  But if you have to travel,
you'll need to find out the procedure from the Hospital or from Hope Lodge.
I believe that when you talk to the American Cancer Society, you can get
information from them about Hope Lodge.

I and my family will keep you in our prayers.  I know that it helps me and
if I can be of any help.  Please feel free to contact me.  If we don't
answer, leave a message and I'll get back to you.

Bill Harry
Meadville, PA 16335
bend@zoominternet.net  (email me and I'll send you my telephone number)