For those of you who are interested in engaging in online email exchanges about acinic cell carcinoma: You can join the Acinic Cell (ACIN-CELL) email group at ACOR.ORG (Association of Cancer Online Resources). Edgar Stroke, who created THIS website, also started that group (hosted by ACOR). Edgar and other acinic cell carcinoma patients share information and experiences (as well as some support) there. Edgar also usually prefers to answer acinic cell related questions via that format, so that other group members can benefit from the interchange.

You can join the email group, as well as search the Archives (dating back to September 1999) for specific information, or browse through all the previous postings, if you want. Much of the time, the same questions are asked by different patients. So by searching the archives, you may find the answer to a specific question, without having to post an email. (You can also check our FAQs page here for answers to more frequently asked questions.)

One nice thing about the ACIN-CELL acor.org email group is that there is very little “chat”. Most postings have to do with acinic cell carcinoma subjects, treatment experiences, etc. This is also nice because most of the postings have useful information, and do not waste your time. At this point, you do not get too inundated with postings, either.

As far as we know, this is the only Email group on the web specifically devoted to this subject. We have however noted some other email groups below that may also have information directly applicable to acinic cell carcinoma patients. There are also innumerable email groups for cancer in general, and many websites for “patient support”, etc. We have not listed any of those.

ACIN-CELL GROUP at ACOR.org

To Sign Up:

  1. Point your web surfer to: http://listserv.acor.org/archives/acinic-cell.html
  2. Click on “Join or Leave the List”
  3. Fill in your email address and name.
  4. Click any options you want, in terms of format.
  5. Click on “Join the List”.

To Search or Browse through the ACIN-CELL Archives:

You can search or browse through the archives for any subject matter that has been discussed online. That still requires an email address, and a password which you create. You can search by writing a key word, or you can browse the postings by date, scrolling down the page and clicking on a month.

  1. Point your web surfer to: http://listserv.acor.org/archives/acinic-cell.html
  2. Click on “Search the Archives”
  3. Type in your email address and password.
  4. If you do not already have one, you may have to “Join the List” first. (I am not completely sure on this. You may just need a password for searching Archives.)

To Look at OTHER ACOR.ORG INFORMATION or Sign Up for OTHER Cancer email groups:

You can look at various cancer-related information as well as other cancer groups at ACOR. ORG (Association of Cancer Online Resources).

Specifically, the Adenoid Cystic Carcinoma (ADEN-CYST) group may have useful information, as that is the most similar cancer to Acinic Cell Carcinoma. There are many more people with Adenoid Cystic, which in general means more treatments are tried (but not necessarily more successfully). (Adenoid Cystic is usually a more aggressive cancer than Acinic Cell.) Be aware that due to more cases and patients, this also makes the Adenoid Cystic group a very large one, and you will get A LOT of emails (as opposed to the ACIN-CELL group, which usually doesn’t inundate you much at all.)

To go directly to the ADEN-CYST sign up/Archives area, go to:
http://listserv.acor.org/archives/aden-cyst.html

To Look at OTHER EMAIL Groups at ACOR, or OTHER ACOR information:

  1. Point your web surfer to: http://www.acor.org/index.html
  2. For various information, click on any buttons you find interesting (including such subjects as “Treatment Options”, “Clinical Trials” and “Support Resources”).
  3. To find other email groups, click on “MAILING LISTS”.
  4. For Adenoid Cystic (or Acinic Cell) Groups, in “Browse Alphabetically” section, click letter “A”.
  5. Click on “ADEN-CYST”.

ACCO (ADENOID CYSTIC CARCINOMA ORGANIZATION) EMAIL GROUP:

There is another smaller Adenoid Cystic Carcinoma group, called ACCO (Adenoid Cystic Carcinoma Organization), hosted under the egroups banner. This is a smaller, more select group of Adenoid Cystic patients. This group will not inundate you with quite so many emails. It also is more focused on information sharing than “patient support”. Some people find it more informative than the ACOR Aden-Cyst group. It is also on a very informative website about that cancer, which you may want to check out. (We share some information and connections with them as well.)
To join that group:

  1. Go to: http://www.orgsites.com/ca/acco/
  2. Scroll to the VERY BOTTOM of the ACCO Home Page.
  3. Fill in your email address and name in the two boxes.
  4. Click the little box next to “Check here to add yourself to our email list”.
  5. You can also type in your address if you wish.
  6. Click “SEND IT”.

OTHER EMAIL GROUPS

There may be other email groups with patients that have useful information for ACC patients. While Adenoid Cystic Carcinoma is the most similar cancer, people with other Salivary Gland or Head and Neck cancers will often have experiences that are similar to ours. Specifically, Muco-Epidermoid and Low-grade Adenocarcinomas have some similarities to ours. And now we think that Secretory Breast Carcinoma does as well. There also is a Pancreatic Version of Acinic or Acinar Cell Carcinoma. So some of those patients may have ended up in Pancretic Cancer groups. It is just a question of how many email groups you want to belong to, and how many emails you want to wade through.

If you DO try any email groups that lead to some useful information for Acinic Cell Carcinoma patients, please email us and let us know. Thanks

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