Rare Cancer Support Forum

I would like to see members post at least once so we could respond . If we do not know anything about your situation we cannot share with you ,helping or learning from you. I check often to see new members in my forum group but many say nothing.To me this is a little sad.

I totally agree Silly, but it is impossible for 'us' to force them to do it. The sad thing is that non-posting accounts have to be removed. And, those people never have their questions answered because they are either afraid to ask them or afraid to ask for help in getting them. I am not sure why that happens.

It means that the site cannot achieve its purpose .This site would be so much better if all posted at least once.

Of course it has not reached it's potential. ACOR was supposed to be taking it over and I was hoping that by using their server, reminder emails could get sent out and hit their target. But, the person who is supposed to move the website over to ACOR has not done anything, although I keep remind him.

I completely agree...I log in every day to see if anything new has been posted, and most of the time nothing is...I had started my own thread titled "Adenocarcinoma of the Jejunum Stage IV"
and have been updating with the wonderful progress my mother has been making :)

anner, I thank you for posting her info. That helps others when they register. If everyone did that, people would be able to help each other.

Hi all,
I joined this a few weeks ago as my youngest sister has been diagnosed with appendicial cancer, she is in Hawaii and her husband is a marine so all the care she receives is at Tripler Army Hospital. The tumor has pushed up on her colon and small intestine making a very small hole for digestion. Most of her meals are liquid right now and they are hoping the chemo will bring the tumor down so she can eat otherwise a colon bag will be placed in. We are all in shock and hoping for the best with this cancer. Anyone that has been through this and has any help to offer we would appreciate your knowledge.
Thank you
Cyndee

Cyndee, You may want to look at these more current posting in the Perioneal Cancer forums:
viewtopic.php?f=129&t=1904&start=25

There are two new members with this cancer there.

sharon wrote:Of course it has not reached it's potential. ACOR was supposed to be taking it over and I was hoping that by using their server, reminder emails could get sent out and hit their target. But, the person who is supposed to move the website over to ACOR has not done anything, although I keep remind him.

That is a great pity.

cyndeer wrote:Hi all,
I joined this a few weeks ago ......Anyone that has been through this and has any help to offer we would appreciate your knowledge.
Thank you
Cyndee

I check in at least a few times a week ,Cyndee, and find the same. I check out my forum group but many have never posted .