I am a fellow ACC survivor that reached out to you last year when I was in treatment. Things are going well so far (being treated at Duke).
I’m not sure where you are but there was a 5K fundraiser for ACC in the Raleigh/Durham area in Sept. You should come down next year. There was 4 ACC survivors in attendance. I think you said you live in VA. Cheers!
krysti on
December 8th, 2009
Hi Gerald!!! I do remember you and I was following your status reports through your e-mails!!! The 5K sounds good although I’m extremely out of shape. I would have to walk it because I have too much restriction in my trachea. I can’t do anything heavy cardiovascular because my opening is so narrow and breathing is difficult sometimes. Please let me know when this happens again!!! I hope you still have my e-mail address and thank you for getting back in touch! Peace!
sheila hill on
December 19th, 2009
Hi, Krysti:
I don’t have a website but have been interested in starting a blog of my own. I found your blog because I looked up ACC on Google. I, too, am an ACC survivor (was diagnosed in 2003) with salivary gland cancer. They removed the gland and I underwent 6-1/2 weeks radiation to the area because of numerous positive margins and perineural involvement.
The last 6 years I lived (I thought) cancer-free, but on Dec. 4th, I was diagnosed with metastatic adenoid cystic carcinoma to the right lung. I went to the oncologist on the 14th and will be seeing a lung specialist soon to determine course of treatment. They have to do other CT scans to make sure the cancer hasn’t spread to the pelvic region (kidneys, liver, bones, whatever), before they determine whether they’re going to open me up to remove the tumor in my lung.
I don’t want to go on with morbid details, but it’s my understanding that once it metastasizes, it’s considered incurable.
I would like to write to you, and if you could periodically e-mail me, I would like that; or at least, I would like to keep up with your blog. As I said, I, too, am fighting cancer, and I had thought, too, about doing a blog on my getting through this ordeal. I know there are others like us out there, even though this is considered a rare form of cancer. - Sheila
krysti on
December 19th, 2009
Hi Sheila,
I’m so glad you wrote! I’m so sorry to hear about the dreaded mets that we all have to face with ACC. You can easily start a blog on your own! The more the merrier and the more information we have out there about ACC, the better! When I was first diagnosed, in 2004, there was hardly anything. I have, in 5 years, seen such a network of fellow ACC patients coming together. It is important that we communicate with each other. If you are on facebook, there are a couple of groups as well for ACC. Please feel free to e-mail me or write to me at anytime at krysti@krysti.net. God Bless you in your recovery. ACC is incurable, but it is also very treatable and we are living with it longer and longer each day that goes by and the research actively done on this rare disease. Keep your hope strong and know you will heal!
jennifer strong on
January 17th, 2010
i was glad to come across your blog. i was diagnosed with ACC in january of 2005 and can remember coming across your website then. looking at your current blogs i wasn’t sure if you have been in remission since your origional radiation treatments or if your cancer had returned?
i was 32, and i had a golf ball size tumor just beyond the carina blocking the airway into my right lung. my doctors felt my best option was to remove the right lung and carina, resecting the trachea to the left lung. we followed up with radiation, and i’ve been in remission since. it seems unreal to me that it has actually been 5 years. then i look at my kids and see how they have grown. my youngest was just a newborn then, and in the fall he will start kindergarten.
i think most of the time i’m a pretty regular mom, but then like now it’s time for my 6 month checkup and i start wondering if we really have beaten it. i hope you are doing well. and knowing that you are out there living your life is encouraging.
I really enjoy your blog, Krysti. I have it linked off of mine, and was out checking on everyone, and had a wonderful time reading your posts. I think your original story was one of the first blogs I found in 2006 when I was first diagnosed, and I am happy to say that you gave me much hope and encouragement that I too would face down cancer and come out the other side. Wishing you the best from this Cheeky Librarian - Teri
patrick on
March 10th, 2010
Hi Kysti, I have just found out i have the same problem three days ago ! I could not breathe went to hospital had a lump removed and they say its acc.
As you can imagine i am searching for help in all directions and i found your information..
I am in Miami and so any help or advice you can give would be appreciated
patrick
Tim on
March 31st, 2010
Kristi:
What a wonderful blog. I to am living with Acc. I think something like what you have done is a wonderful thing for everyone on this path. Feel free to contact me at my email. Heck everyone can email me at sage4711@gmail.com. Be well all.
Tim
Alicia on
May 11th, 2010
my mom just got a lump removed last week in which they said the lump did not look cancerous, she had a follow-up appt yesterday and they told her she has ACC im so scared an don’t know what to do or how to handle it.
I am a fellow ACC survivor that reached out to you last year when I was in treatment. Things are going well so far (being treated at Duke).
I’m not sure where you are but there was a 5K fundraiser for ACC in the Raleigh/Durham area in Sept. You should come down next year. There was 4 ACC survivors in attendance. I think you said you live in VA. Cheers!
Hi Gerald!!! I do remember you and I was following your status reports through your e-mails!!! The 5K sounds good although I’m extremely out of shape. I would have to walk it because I have too much restriction in my trachea. I can’t do anything heavy cardiovascular because my opening is so narrow and breathing is difficult sometimes. Please let me know when this happens again!!! I hope you still have my e-mail address and thank you for getting back in touch! Peace!
Hi, Krysti:
I don’t have a website but have been interested in starting a blog of my own. I found your blog because I looked up ACC on Google. I, too, am an ACC survivor (was diagnosed in 2003) with salivary gland cancer. They removed the gland and I underwent 6-1/2 weeks radiation to the area because of numerous positive margins and perineural involvement.
The last 6 years I lived (I thought) cancer-free, but on Dec. 4th, I was diagnosed with metastatic adenoid cystic carcinoma to the right lung. I went to the oncologist on the 14th and will be seeing a lung specialist soon to determine course of treatment. They have to do other CT scans to make sure the cancer hasn’t spread to the pelvic region (kidneys, liver, bones, whatever), before they determine whether they’re going to open me up to remove the tumor in my lung.
I don’t want to go on with morbid details, but it’s my understanding that once it metastasizes, it’s considered incurable.
I would like to write to you, and if you could periodically e-mail me, I would like that; or at least, I would like to keep up with your blog. As I said, I, too, am fighting cancer, and I had thought, too, about doing a blog on my getting through this ordeal. I know there are others like us out there, even though this is considered a rare form of cancer. - Sheila
Hi Sheila,
I’m so glad you wrote! I’m so sorry to hear about the dreaded mets that we all have to face with ACC. You can easily start a blog on your own! The more the merrier and the more information we have out there about ACC, the better! When I was first diagnosed, in 2004, there was hardly anything. I have, in 5 years, seen such a network of fellow ACC patients coming together. It is important that we communicate with each other. If you are on facebook, there are a couple of groups as well for ACC. Please feel free to e-mail me or write to me at anytime at krysti@krysti.net. God Bless you in your recovery. ACC is incurable, but it is also very treatable and we are living with it longer and longer each day that goes by and the research actively done on this rare disease. Keep your hope strong and know you will heal!
i was glad to come across your blog. i was diagnosed with ACC in january of 2005 and can remember coming across your website then. looking at your current blogs i wasn’t sure if you have been in remission since your origional radiation treatments or if your cancer had returned?
i was 32, and i had a golf ball size tumor just beyond the carina blocking the airway into my right lung. my doctors felt my best option was to remove the right lung and carina, resecting the trachea to the left lung. we followed up with radiation, and i’ve been in remission since. it seems unreal to me that it has actually been 5 years. then i look at my kids and see how they have grown. my youngest was just a newborn then, and in the fall he will start kindergarten.
i think most of the time i’m a pretty regular mom, but then like now it’s time for my 6 month checkup and i start wondering if we really have beaten it. i hope you are doing well. and knowing that you are out there living your life is encouraging.
jen
I really enjoy your blog, Krysti. I have it linked off of mine, and was out checking on everyone, and had a wonderful time reading your posts. I think your original story was one of the first blogs I found in 2006 when I was first diagnosed, and I am happy to say that you gave me much hope and encouragement that I too would face down cancer and come out the other side. Wishing you the best from this Cheeky Librarian - Teri
Hi Kysti, I have just found out i have the same problem three days ago ! I could not breathe went to hospital had a lump removed and they say its acc.
As you can imagine i am searching for help in all directions and i found your information..
I am in Miami and so any help or advice you can give would be appreciated
patrick
Kristi:
What a wonderful blog. I to am living with Acc. I think something like what you have done is a wonderful thing for everyone on this path. Feel free to contact me at my email. Heck everyone can email me at sage4711@gmail.com. Be well all.
Tim
my mom just got a lump removed last week in which they said the lump did not look cancerous, she had a follow-up appt yesterday and they told her she has ACC im so scared an don’t know what to do or how to handle it.