tag:blogger.com,1999:blog-9193739754926367725.post7964766891161961385..comments2023-10-30T08:11:27.805-04:00Comments on A Rare Cancer Journey: Room 207Maryhttp://www.blogger.com/profile/08121515983398041707noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-9193739754926367725.post-77837980770054582492014-11-17T23:01:31.042-05:002014-11-17T23:01:31.042-05:00Hi Nicki: I'm so sorry to hear that your husba...Hi Nicki: I'm so sorry to hear that your husband has ACC, but so glad that you reached out. Please visit ACC Organization International at www.accoi.org and ACC Research Foundation at www.accrf.org for the best information about ACC. I work closely with the Board of ACCOI, a patient organization and we would love to help you and your husband navigate this really hard time. You are at the right place at Hopkins and Dr. Hong is probably the best Interventional Radiologist for ACC in the country. I have sent several ACC patients to him. Please email me at seeleykathryn@gmail.com and give me your contact information. I would be happy to talk with you. This disease is scary as hell but it is manageable. You're doing everything right!Kathryn Seeleyhttps://www.blogger.com/profile/10304692867653493516noreply@blogger.comtag:blogger.com,1999:blog-9193739754926367725.post-65337662391192930262014-11-17T21:08:50.885-05:002014-11-17T21:08:50.885-05:00My husband was diagnosed with ACC 9/12/14 & ha...My husband was diagnosed with ACC 9/12/14 & had surgery on 9/30/14. He had a tumor removed from his Parotid gland @ Hopkins. The night before surgery we received the results from his Pet scan which indicated he also has tumors in his liver. We received the results from the liver biopsy 2 weeks ago and he was told its also ACC and there is no cure. He started radiation on his face last week and is waiting to get an appointment with Dr. Hong who I noticed is also your doctor. We have really received very little info from Hopkins and not a lot of hope. Any info or tips you can pass on would really be appreciated. Thanks, NickiNickatnight69https://www.blogger.com/profile/14949274872643390607noreply@blogger.com