I can't reply

LorettaMarshall said:

Hey-I'm just looking at other links & they R having same problem

Hello - Actually I'm Loretta from the Ovarian Cancer page.  I've been looking for a "villain" this morning.  Someone has signed up and posted bogus stupid words on at least 4 sites.  I am flagging them.  But I noticed you're having the same problem as me.  So I have complained to the "security site."  When the "error" message came up, it was extremely frustrating as I had spent hours researching info for a patient, and then couldn’t "get through."  So I clicked on the security link and up came a blank e-mail form.  It was then that I submitted a portion that had web links in it that I had copied and pasted. 

I then copied the "error" notice.  They wrote back and said, that my letter had some "hidden content" in it and that's why it didn't go through.  So I sent another message earlier this morning, and put all the letter in it, and then sent another "error" message that blocked my entry.  I said, "Here is the letter."  Tell me where the hidden content is.  If I'm this smart, I could have opened the IPhone of the terrorist for the FBI. 

Believe me, it's frustrating.  If we can't submit web links to help others, our own opinion without any substantiating links or helpful links is very limited.

I'm upset "big time."  Obviously, this page has been "revamped".  These are programming errors on their part, and someone is getting paid a good salary, but obviously need to do a better job.  We're patients out here that need to be able to communicate with others and exchange web links when appropriate.

I also complained about taking away the word "SUBMIT" and putting "SAVE" in its place.  Now that's confusing.  Since I had spent a lot of time with my letter, I went back in, took out the web links, and then went down and clicked on "SAVE".  It posted.

Now who clicks on a word "save" when they want to "send" or "submit" something?  Not the normal lady sitting home with cancer trying to converse with another friend?  So I'm big-time upset.  IT IS NOT YOUR ERROR--IT IS THEIRS.

I suggest you contact the “security” blue letters that appear on your “error” message, and tell them that you haven’t changed anything about the way you post, but they have and it’s causing all of us problems.  Each person that gets an “error” message should complain.  This can be fixed, and I hope it is soon.  Just thought you should know, you're not the only discussion link that finds the new "format" very UNHELPFUL! 

 Loretta Marshall

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV 

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Note:  I just found a page that said we could register problems with the site.  This is what I just wrote.  You can tell, I'm really unhappy about not being able to communicate the way we once did.  Believe me, the ERROR is theirs--not ours. 

This is a copy of a complaint sent last night.  Obviously many on different sites are not able to communicate in their usual way, since you have updated the site.  I see numerous complaints of "blocked" pages with an "ERROR" message.  Just hope someone can quickly properly program the site in such a way that it is user friendly.  It is not OUR error, it is the programmers' error.  Thank you for attending to this complaint, and correcting the error in a timely manner.  And while you're at it, please return the two options, "SUBMIT" and "PREVIEW".  They worked just fine before the word SUBMIT was "upgraded" to "SAVE"!  Save to what?????

copy of my letter below

Loretta - Ovarian Cancer site

https://healthunlocked.com/ovacome/posts/438975/hello-all-can-any-of-you-with-ovarian-carcinosarcoma-tell-me-what-treatment-youve-had-and-how-it-has-responded-or-anything-else-useful#post-responses

The stories on this site are quite old but I just ran across in it trying to find some useful info relative to your specific diagnosis.  They seem to be saying that another term for carcinosarcoma is MMMT.  That is mentioned in the UPMC report. While my diagnosis is rare as well, it has not been written down on my chart just like yours. In scanning some of these comments, seems as ones who did have chemo cited either carboplatin alone or combos of carboplatin/taxol, or carboplatin/cisplatin. 

 

We're sorry for the inconvenience! There seems to be a problem with your request.

Please contact Customer Support at na.itsecurity@cancer.org for assistance.

*clicking the above email link will automatically add some important details to the email for us to investigate the problem. If the link does not work, please copy and paste all of the information below into an email na.itsecurity@cancer.org

Regards,
Your American Cancer Society Cancer Survivors Network Technical Support Team.

Event ID:	543948659660
Host:	csn.cancer.org
Timestamp:	Sat Apr 30 2016 17:57:18 GMT-0400 (Eastern Daylight Time)

  

Not a happy camper!  Like Loretta, I wrote a long post of info to several different people, noticed the submit button was gone, hit the preview button, bye, bye, post!  Conplained to CSN, they sent the standard, Please be patient, working on it, ect"  Too tired to re-write.  Also, two E-mails went a muck!  Don't like the "save" or "preview" buttons at all!  Debra

Hi all,

I'm Rowan, one of the moderators. While we actually did do an extensive amount of user testing before the platform updated, a variety of system errors and problems have cropped up despite our best efforts. Thank you for letting us know about the problems as they come up for you; your feedback helps us track how the users are being affected. We are currently working hard on finding solutions for the tech problems, and we apologize for the frustration you are all experiencing.