Your ACC Stories
If you have ACC or know someone who has ACC, I encourage you to post your
story here. You can also post information that may be useful to others, such as
physicians and treatments that have helped or hindered your progress. Over the course of the last few years I have received so many emails
with personal stories that I thought it would be great for
everyone else who has ACC to benefit from them. There is a healing process that
occurs when you know you aren't alone in the fight, especially with a rare disease. Thanks for sharing your
Click Here to Post Your Story
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Jane Hughes - June 28
I am a 47yr old Woman living in the Uk, and like Elaine earlier on, would like to hear from anyone else in the Uk with ACC. I was diagnosed with ACC in the lung at the bottom of the trachea in March 2009, after being treated for asthma for over 3 years. I have faced similar problems with lack of information and no clinical trials for treatments. On March 27 09 I had the tumour removed along with my left lung and a small section of trachea. I'm now facing a tricky decision about further radiotherapy to start soon to "Zap" the remaining cancer cells still lingering at the top of my right lung. this is a tough decision, as is likely to result in further loss of lung function, possibly permenantly. Whilst I have gone down the surgical route, I am also interested to hear anyone's experience of diet and homeopathy with this type of cancer.
Thanks to Krysti for providing this website which has given us so much useful information. I can be contacted at email@example.com
adolfo zavala - May 11
hace 4 dias me detectaron este tipo de cancer y estoy muy asustado no se como reaccionar los medicos ban a empesar en tratamiento con migo en esta semana esperemos y funcione para poder seguir adelante y se guir luchando
Babs - March 26
It was so nice to see your website. I feel like I am grasping at straws. I came upon your website quite by accident and thought I would see if you had any suggestions. I have been going to every specialist there is for the last year and no one can pin point my problem. It a year ago started with swallowing problems, hoarseness, pain in the right side of my chest and pain in my shoulder blades. The Gastro says GERD and a hiatel hernia, the ENT was baffled and pretty much blew me off, the Cardio says heart is good. I am Hypothyroid with cysts on my thyroid but the Endo says "come back when the cysts are the size of a golf ball" :). I do have problems with depression so I feel like the doctors don't take me seriously (they think I'm a women and I'm crazy). I am at the end of my rope with the medical community. I just thought you might have some reassurance for me.
kh - March 24
My husband had a small "mass" in his ear canal. Did not appear to the ENT to be anything at all but a "pimple" like thing. However, post surgery the ENT said he would have removed more tissue had he known it was adenoid cystic carcenoma. Yes, we are young. My husband was 41 when diagnosed with every doctor we saw giving a different opininion. The rediaction onocologist suggested 31 days of radiation the surgeon says this isn't a good idea since after radiation more sugery on the area if needed wouln't be an option. We opted to do no more, since he did have clear margins. Tonight, however he just had me look in his ear to an odd looking very small area which is hopfully nothing. You live with a bit of fear-I supposed is completely normal. We are just trying to make sure we stay on top of this since it seems most doctors are unsure how to react to this sort of cancer. We have 3 children who we are both looking forward to watching grown into wonderful adults. So many are in great pain and have so many more stories....we still do feel blessed.
Has anyone out there ever heard of this sort of cancer in the ear canal and if so what was the outcome?
Thank you for your time.....
Sandy Phillips - age 62 - October 28
I have just been diagnosed with ACC on the base of my tongue. Had just returned from a month long vacation in Montana and Hawaii on a hiking excursion when I felt a lump at the base of my tongue. Went in for a biopsy and the mass was discovered to be malignant.
I live on St. Simons Island in Georgia and the Mayo Clinic in Jacksonville, FL is only an hour's drive, so I chose to go to a large hospital to find the best care. I had my appointment with Dr. John Casler yesterday and he is to perform laser surgery next Tuesday followed by radiation and chemotherapy.
I'm in excellent physical health - I jog, work out in the gym, kayak and hike every opportunity I get, therefore, I'm ready to start the battle and live for a long while especially for my two adorable grandaughter's ages five and seven.
Norma - October 26
Hi Krysti !! Thank you very much for creating this site, God bless you and you family for this. My sister was just diagnosed a couple of weeks ago with ACC at the MD Anderson in Houston. The location of ther tumor is between her trachia and her esophagus. She was told by a head and neck surgeon at that hospital that they have not done a surgery to remove an ACC tumor from that location before. She is now looking to get a second opinion and to find a surgeon who has experience with this type of surgery therefore any spceific information such as Drs. names, hospital names and locations will be of great help. She is weallign to travel anywhere in the States for this.
ma cristina hawit - October 26
My sister in-law was diagnose with ACC a moth ago. She is in Houston, TX at M.D. ANDERSON. We do not know what to do and specially know we are receiving too much opinion from family and friends. Can you please tell us where to go pls? This is the first time at this Hospital that they see this tumor because the location... It is in the trachea pressing the esophagus and just below the voice box and it is resting on the cervical (posterior wall) we are very worry, please help
Maria - October 26
My cousin has just been diagnosed with adenoid cystic carcinoma at M. D. Anderson Hospital. Her doctor is still meeting with other doctors of head and neck department to see what the best treatment for her will be. She has adcc in her trachea, at the bottom of her voice box" I think this is how it is called".
The doctors seem to be confused about what the best treatment for her will be, because if they operate she might have damage to her vocal cords and loose her voice.
We are all very scared with this rare desease, the doctors are confused.
Could you send me information of your doctor and hospital. We want to see a doctor with operating experience of adcc.
Please help us with this information,
Dana, Washington state - September 23
I was diagnosed with ACC in april of 2008. I had a small lump in the back of my mouth. They said it was a rare form of salivary gland cancer. Minor gland. They did more surgery but didn't get clean margins. So now i am going through Neutron Radiation Treaments in Seattle and the University of WA.
I have to do 16 treatments and have 5 left to go. I am having some vairious side effects, but knew they would happen. Its pretty rough. I hope I have caught this early and am killing it in its present site. If it goes to my lungs then I will attack it there too. Anyone like me out there? I am new to this site.
I am 48 and female....... Very Healthy otherwise.
Anyone want to chat? firstname.lastname@example.org
God bless you all...
Lynn Burkett, Chad's Mother - September 19
My son Chad Stone was 27 at the time he was diagnosed with Adenoid Cystic Carcinoma on Aug. 16, 2004 seeing different Doctors. He ended up going to UCLA Harbor General where they kept giving him Medicine for 3 to 6 Months saying he had a Sinus Infection. Then a Dr. Ford finally saw him and said there had to be something more by all the symptoms Chad was having. I'll never forget him calling me that day I was at Mervyns with my Mom. Chad told me this Dr. Ford did a biopsy. At that point I told him I would take him from then on. When we went back to get the results. Dr. Ford was on Vac. So they told Chad he would have to have a MRI and a Surgical Biopsy. When we were waiting for that to be done. Dr. Ford walked up and said I guess they told you that you have Cancer. We were appalled. The Cancer is in it's forth stage behind the left orbit of the eye and blocks the tube of his left ear and it's wrapped around the main artery going to the Brain. And can't be cut out. So he had Chemo and Radiation in 2004 in 2006 it started growing again so this time he had Chemo, Erbitux and Radiation again because of his age they said it was his only chance. Here we are in April 30,2007 he saw Dr. Glaspy to compare two MRI he had taken. They basically said that he was stable at that time. They wanted him to see Dr. Sercarz he's a head and neck Sergeant, they want him to do another Biopsy to see what's going on that the MRI isn't showing. He's been having some side effects that they think he might be having a recurrence of the Cancer. He can't smell, see's double when he looks side to side. When he yawns he gets severe pain in the back of his neck. On Thanksgiving Weekend he had a Chronic Nose Bleed that last 10min. to 15min. and it happened 3 times that day.
When I called Dr. Glaspy they wanted a MRI done immediately. Dec. 7, 2007 we got the results he has enhancement on the left side and fluid on the right. Not good, they wanted him to follow up with the sergeant Jan. 2008 that way he could enjoy his Christmas. On Jan 8, 2008 Dr. Glaspy calls want's Chad to have another MRI on Mar. 5, 2008. Then he went to see his ear Specialist he had some good new's and some not so good news. The good news is Chad can wear hearing aids to hear. The other is that he has permanent damage from chemo and radiation. The right ear is blocked because they say the tumor is bleeding, I have never heard of that before. A tumor bleeding! So he can't drain the fluid. He told us to come back in three months if the fluid is clear then he well try to drain it. To put a tube in his ear right now could be a real problem, because unlike his nose bleed they wouldn't be able to stop the bleeding they can't pack an ear. He did say that if he could remove the blockage on the right side then maybe he could hear better. When the Doctor told Chad that he would have to wear hearing aids. I saw something leave his face. Mother instinct is to run up and show your teeth and hold your child tight and to put your claws out to protect him. But I feel so hopeless I try to hold it together when I'm with him. But to watch your child being taken apart piece by piece is so unbearable. It's always on your mind, what next? After we left we went to Sonus the hearing aid place so they could order his hearing aids. When the Dr. was showing Chad the hearing aids Chad replied can't they give me something smaller. They wanted to give him what they call a full shell it covers the whole inside of the ear. But Chad said I'll look like my Grandpa and I'm only 30 so they might give him a half shell instead. Then he said "wait till we all get together for Christmas or something and than won't know who's hearing aid is beeping." Someone will say Grandpa your hearing aid is beeping oh no sorry it's Chad. He laughed with a tear in his eye. Maybe when he get's his hearing aid's if they work really good he won't mind wearing them to much. But it never worked out for Chad the Medical said he hadn't lost enough of his hearing.
Bad New's, Denise called Mar. 18, 2008 Dr. Glaspy's Nurse said that the MRI said his Lymp Glands were swollen and something about his Lymph Nodes. She was trying to get a hold of another Doctor to consult with. She said some thing about using more Chemo, but something new. And she wanted me to call Dr. Sercarz the Sergeant to make sure he looked at the MRI.
We went to see Dr. Glaspy yesterday only to find out Chad's options were slim they had a Clinical Research Nurse come in and talk to Chad about participating in a research study, with a new drug. I asked Dr. Glaspy after hearing everything the clinical nurse had said, was there any thing else to try. He told Chad that he was so sorry but he had nothing right now. If this doesn't work then by then he might have something else to try. At the time it was either that or do nothing. I asked "if Chad did nothing, about how long?" Denise said there's no way of knowing for sure. The scan says Chad has New Enlargement on his Lymph Nodes. The only thing in his favor is that Dr. Glaspy said it's growing very slow.
We went to see Dr. Sercartz yesterday who is the Sergeant. He told Chad to do the Clinical Trial first, that he too, felt it was Chad's best option. The cancer is moving really slow right now. Before doing any Surgery, he also let Chad know that if Chad wanted Surgery to try to remove the bulk of the tumor he would. Dr. Sercartz asked Chad how he was feeling? was he able to do any sports? Chad replied yes I ride my quad and my bike and I plan on surfing when it get's warmer. Dr. Sercartz told him if he did that type of Surgery it would probably lay him up for quit awhile and he want's Chad to have the Quality of life. But if it get's to where Chad is having a lot of pain then he would do what ever it takes to help Chad feel good. But they would never be able to remove the whole tumor. Then they both talked about the different beaches and where the best places were and old stories. It was really neat to listen to them. He told Chad that he lives in Balboa, Ca. Before we left Chad told him that the left side of his tongue was numb. He told Chad that hopefully the right side won't go numb because then he might not be able to taste. Oh, Chad wanted his opinion on Phytoplankton about a guy that says it cured his Collin cancer and how the Doctors were amazed. It's a single celled-Aquatic Organism or micro algae it is not plant or seaweed or herb. Chad also asked him about other herbs. He told Chad that his dad's cancer was Inoperable and that his dad's friend has some kind of light fixed up for his dad to lay under every day for treatment. And his dad said that he's starting to feel better. So how can I tell him it's not working, we don't know. So read about what ever you want to try and if you think it's right for you try it. We still don't have a cure for everyone's cancer yet. And Miracles Happen. We went to the Consultation on the Clinical trial so we will know more about when there going to start. So please pray for him, thanks so much.
Chad, Nichol (friend of chads) and I went yesterday to UCLA Westwood where Chad had to be at the 200 Building on the first floor by 7 am. There they did his Lab work, they also did a EKG then from there we went to the 100 Building so he could have a CT scan of his Torso. He had to drink two bottles of that chalk stuff then wait for 45 minutes before they took him back to do the scan. Once he was in there they still put the contrast die in his arm too. From there we went back to the 200 building where we met Dr. Carolyn Britten she's the one that's in charge of this research study. She told us about the Drug that Chad will be taking it may slow down the growth of cancer cells or kill cancer cells by blocking certain enzymes (proteins produced by cells) She said it works a little different then the usual Chemo. But it is new so we don't know any thing about it yet. We asked if it had been used on this type of Cancer before but she told us no Chad you will be the first. She said the problem with Chad's cancer Adenoid Cystic Carcinoma it is very rare and very stubborn to any treatment. It doesn't do good with any Chemo or Radiation. that we've found. After we saw her we went up to the third floor for Chad to have a Echo Cardiograph of his heart. But it was only 10:45 am and his appointment was at 1:30 pm luckily they went ahead and told him to wait and they got him in by 11:15 am, we were done for the day. Thought maybe we could go get something to eat and visit but Chad just wanted to go home and sleep. They started Chad's trial drug on a Mon. at 8 am he was there until 6:30 pm that evening. And then I'll know more of his schedule. Nichol said she would go with us. She's really a sweat heart and a really good friend to Chad. There's been times that Chad couldn't take the drug because his platelets were down. And he's had a real hard time trying to sleep. Because of the ringing in his head besides laying there wondering what's going on. He doesn't really complain about any thing. I just over hear the things he tells the Doctors. When I ask how he is, he tell's me no worries. Well we've reached the time to see if the drug is working. Wed. June 12,2008 Chad had another CT done. We see Dr. Wainberg Mon. at 12:15 PM after Chad has his blood taken. But whether he'll know any thing by then who knows.
The Bomb drops Chad's taken off the research drug because it was not working. "There's nothing else to try" Say's Dr. Brittin whos in charge of the research. You need to talk to Dr. Glaspy.
So we called to hear the Cancer is now in the Spinal Fluid and on the Brain stem
Called the Cancer Resource Center the other day Chad said he wanted to try Herbs. But I didn't get back the answers I wanted. Shane, he works in the resource center. He talked to the doctor Mary Hardy that does the Herbs. She's suppose to be really good. But after he told her about Chad's case. He told me she doesn't have a Miracle pill. That she works with people that are taking Chemo like when they get sick. Chad doesn't know what they said yet. I just can't bare to give him more bad new's. Love ya, Lynn
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