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Adenoid Cystic Carcinoma

Molly675's picture
Molly675
Posts: 1
Joined: Jan 2012

Hello, I am new to this site and decided today to join. I found out in 2009 I had Adenoid Cystic Carcinoma, a very rare cancer that usually begins in the salivary gland. After having had surgery at Ohio State, and completed 35 radiation treatments in my hometown, all was well. Until June of 2011 when I found out it has now metastasized in my lungs. I now have about 100 lung nodules and I'm starting a clinical trial this week at MD Anderson in Houston, TX. I'm only 39 so this has all been overwhelming and difficult to handle. Any advice, recommendations would be helpful.

Thanks!
Molly

P.S. Blessings to you all..I would love to chat or encourage any of you who are going through similar issues as I am.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Sorry you have to battle this so young, and especially a 2nd time around.

Not sure where in Ohio you are, I know Nwasen on here went to The James at OSU. But several here either are or have had Tx at MDA too.

I live in Florida, but grew up in Mount Vernon (born in Mansfield)...

There are a few on here that are going through similar.

GlennaM is one that is now doing battle and kicking butt in the Lungs also.

Thoughts and Prayers, (Glenna you are always in mine).

Best,
John

nankster's picture
nankster
Posts: 5
Joined: Dec 2011

Hello Molly,
I am very saddened with your news of its return. I sincerely wish you the best. Our surgeon at MDA is Dr. Gillenwater and our dental oncologist is Dr. Jacob or Hofstede. Our radiologist is/was Rosenthal. I think you are in excellent hands at MD Anderson. Our surgeon told us from the onset that it can get in the lungs and sit there for 20 years. Have you been told that you have to address it now? Probably best when you are young and strong. Anyway I want to wish you well.

My wife was diagnosed with ACC in August with a tumor on the roof of her mount. She had her soft palate and a large part of her hard palate surgically removed followed by 30 treatments of radiation. She completed the last one on December 16th. It has been very difficult for her and I'm hoping you can shed some light on it for me. How long after the radiation did you start to feel better? She is having a ton of anxiety issues. Most of the pain is gone due to the Fentanyl patches of 50 mcg. We recently reduced from 74 mcg. She is taking one half of a .5mg Clonazepam in the morning and again in the evening to deal with the anxiety. Sometimes has to have it in the midday. She is crying a lot and has lost about 10 lbs since treatment began. She only weighs 110 lbs. She hates the Ensure and Boost but that's all she's consuming and only about 1100 calories per day. Her sores in the mouth seem to be improving but she is pretty much a wreck otherwise. I have not run into many people that have experienced the same thing and would appreciate your feedback. She is also very concerned about the recurrence. I have a difficult time getting her to have any positive thoughts.

Sincerely and Best wishes,
Frank

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

While I can't offer much on what you are looking for. For your wife to be so small and still only losing 10# during treatment is awesome.

You didn't mention if she had a PEG or not, but only being 110# I would hope that she does. I guess as long as she continues getting in 1100 a day she should be good to go...but she's only a few days away from being in trouble at that weight.

You'll find a lot of great people here, and hopefully a few with the specifics you are looking for.

Stay strong for your wife and try to both keep a positive attitude. As for her fears, it's very common.

Oh, one thing to really stay up on, is hydration...

If I were to guess if she continues the way you describe, she should start to make continued improvements. The first 3 - 4 weeks after rads, you are still basically cooking...improvements are made more weeks and months versus days and weeks.

Thoughts and Prayers,
John

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

You'll find many cancer patients have issues with depression and/or anxiety. Thank goodness for meds. Does your wife know that there are ways to "doctor" the Ensure drinks? you can blend in peanut butter, ice cream, pudding mix, chocolate syrup, lots of goodies. Very good to hear that she only lost ten pounds during treatment. Hope you see some improvement in her emotional state. Have you all ever considered doing visualization? Kind of like daydreaming. It can be helpful, I think.

nankster's picture
nankster
Posts: 5
Joined: Dec 2011

Thanks to all that have responded. Yes we have worked with the meditation team as well as the psychiatrist group at MD Anderson. It has been a big help. We have a ways to go however. Thanks for the tips on the Ensure smoothies. I ordered a professional grade BlendTec blender that should be here this week. Supposedly we can puree anything in that monster so I am hoping to come up with something more enticing. Thanks again for the words of encouragement and as far as hydration she is doing fine at 40-50 oz water per day. And she does not have a PEG. No real issues swallowing it is more a taste issue and stomach nausea when she consumes just about anything. She is on Reglan for that and it does help.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Here's a link compiled by Dawn (Sweetblood) of contributions from the many members here.

SUPERTHREAD

It has tons of great info and also you might find some smoothies and other foods that might help you and your wife.

Best,
JG

adenoidcystic
Posts: 4
Joined: Jan 2012

Please visit Adenoid Cystic Facebook page and unite with several other ACC survivors. Also, www.attackacc.org. You are not alone.
God Bless,
Terry
Big sister of 20 year ACC Survivor
Chgo, Il.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I would have liked to have gone to Ohio State for my treatment (nothing against my center - they got the job done). Hope the trial at MD Anderson goes well - I'm sure you're nervous. Keep us updated.

JKMDean's picture
JKMDean
Posts: 13
Joined: Sep 2011

First of all, I wanted to say that I'm sorry to hear about your cancer coming back. I have heard that there is a very low rate of that but we never know, do we? Sometimes statistics seem so useless. I just wanted you to know that I will definitely keep you in my prayers as I myself am a survivor of ACC and appreciated all the prayers I could get! I am 38 and was diagnosed in July of 2011, had 33 sessions of radiation, and have been good since then. I am also in Texas, in Fort Worth, let me know if there is any way I can be of support to you besides prayer. We all have to do what we can for each other so I am totally willing! Hang in there and please keep us posted on your success!
Jennifer

k9lover
Posts: 3
Joined: Jan 2012

I live in Colleyville, and just recently diagnosed with ACC. Had wide excision Dec 21, awaiting visit with my surgeon at UT Souhwestern this week. Where did you have radiation, and what tips can you offer? I am a nurse, and yet I know nothing about this.

alicegoodson's picture
alicegoodson
Posts: 2
Joined: Jan 2014

I'm talking to Dr Brandon Issacson at UT Southwestern about surgery

Can I ask who you are using ?

I dont have a clue what Im doing...so worried and yet trying to be brave

This is all new to me...be 72 years old always very healthy

Have been married going on 55 years...Iam my husbands care take

Appreciate any info you may have

                      Alice Goodson

By the way where are you from...we are in East Texas close to Tyler

KTeacher
Posts: 991
Joined: Jan 2011

Please start a new post.  This post started a while ago, you will get more feedback if you start a new post.  Welcome to our group.  You will meet some very caring, honest survivor's here.  If you are your husband's caregiver, I don't mean to be rude, but do you have family or friends that you can count on for help.  You are in for a battle that is not much fun but doable.  Keep us posted.  Please read the Superthread at the top of the posts.  It will help you understand what you will need during this treatment.

k9lover
Posts: 3
Joined: Jan 2012

I live in Colleyville, and just recently diagnosed with ACC. Had wide excision Dec 21, awaiting visit with my surgeon at UT Souhwestern this week. Where did you have radiation, and what tips can you offer? I am a nurse, and yet I know nothing about this.

JKMDean's picture
JKMDean
Posts: 13
Joined: Sep 2011

Hi,
I'm sorry to hear about your diagnosis. Let me preface this response by saying that I do not want to alarm you or scare you at all. I'm going to tell you what my experience was like but everyone is different and my oncologist said that I did have some complications that were rare. So please don't expect this to all happen to YOU.

My radiation oncologist is Dr. Jerry Barker, Jr. and he is at Texas Oncology next to Baylor, downtown Fort Worth. He worked with this particular type cancer in Seattle where they specialize in it so I felt very comfortable with him. http://www.texasoncology.com/doctors/Jerry_Barker-Jr/

Before you start radiation, you will need to see a dentist that knows about radiation and how to treat beforehand. I had to have extensive xrays done to make sure my bones were strong and there was no decay in my teeth below the gumline. You will not be able to have any teeth extracted ever after radiation so if you need anything fixed it has to be before. Dr. Barker recommends Dr. Barbash in Dallas but I was not able to pay the $1200 up front that he required. However, they do accept care credit and if he is in your network I would recommend going that route.

If you are a coffee or caffeine drinker, ween yourself off of it NOW. I did not and 2 weeks into radiation I couldn't tolerate coffee anymore and suddenly had to stop drinking it. I was so sick from a combination of the radiation and withdrawals that i was throwing up.
That being said, I also had my radiation in the hottest month of the year and that made it worse - I don't want to scare you. I was told that the radiation made me nauseous because it hit my brain stem but it doesn't affect everyone that way. I was able to go to work the entire time but the last 2 weeks I worked half days.

They should give you some samples of some cream, I believe it is called X-Clare, I can't remember exactly. It worked much better for me than the OTC ointment and it wasn't greasy. Also, they gave me a prescription for NeutraSal, which is a powder that you mix with water and swish in your mouth to replace the saliva. I know it sounds disgusting but it isn't as bad as it sounds. It helps to use the cream right after the radiation and also before but not right before because that actually makes it burn more.

Another important thing is to examine behind your ear each day. Because of the surgery, I can't feel my ear and some of the surrounding tissue. The radiation had caused some burning and blistering back there that I didn't know about until the skin was gone. If I had let them know before, they could have helped me prevent that. It took a while to heal up but it's fine now.

I also lost a notch in my hearing but it was a notch that is not within normal range anyways. However, my brain is trying to make up for it so I have tinnitus in that ear that should go away within 6 months. I'm not saying that will happen to you because I think I did have more complications than a lot of people have. My ear filled with fluid and I couldn't hear from that ear for a while but it is fine now.

I also got thrush, which is common in cancer patients. My dr. gave me a 10-day supply of Diflucan and it went away. I didn't have a sore throat at all and the whole time I only developed 1 sore in my mouth which I didn't even know what there. Some people do get them though.

Plan to get a lot of rest and let someone take over some of your responsibilities. I can't express how much it will help if someone can help you out once in a while. I'm single so my mother helped me out as well as one of my friends.

Get some vanilla ensure and you can make shakes with bananas and icecream, etc. Don't worry about gaining weight because you won't. This is your time to eat anything you want but try to make it something with a lot of protein - greek yogurt, ensure, ect. and stock up on mashed potatoes and soft foods.

When I went in each day for radiation, I just sang a song in my head. The mask was kind of scary at first but after a few times it flies by.

You can do this, believe me! I am such a baby and I acted like a big girl and just did it. If you want to read about it and see the pictures of my neck you can check out my blog. It is www.fatherisaking.blogspot.com I think you will find it a lot more encouraging than this reply.
I lost some hair underneath but it is coming back and same color. My face is still slightly discolored but doesn't bother me at all.

Here is a website that I found, it has a lot of good information about what to expect in general but it also has a list of foods and liquids that are good.

http://www.cancer.gov/cancertopics/coping/radiation-therapy-and-you/page8

If you have any questions that I might be able to answer feel free to ask. And we live really close to one another so if you ever need help or if I can do anything for you, please let me know! Keep us posted on everything...

God Bless,
Jennifer

adenoidcystic
Posts: 4
Joined: Jan 2012

Please visit Adenoid Cystic Facebook page and unite with several other ACC survivors. Also, www.attackacc.org. You are not alone.
God Bless,
Terry
Big sister of 20 year ACC Survivor
Chgo, Il.

adenoidcystic
Posts: 4
Joined: Jan 2012

Please visit Adenoid Cystic Facebook page and unite with several other ACC survivors. Also, www.attackacc.org. You are not alone.
God Bless,
Terry
Big sister of 20 year ACC Survivor
Chgo, Il.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Sorry for your ordeal...but welcome here...

Here's a link compiled by Dawn (Sweetblood) of contributions from the many members here.

SUPERTHREAD

It has tons of great info and also you might find some smoothies and other foods that might help you and your wife.

Best,
JG

adenoidcystic
Posts: 4
Joined: Jan 2012

Please visit Adenoid Cystic Facebook page and unite with several other ACC survivors. Also, www.attackacc.org. You are not alone.
God Bless,
Terry
Big sister of 20 year ACC Survivor
Chgo, Il.

katenorwood
Posts: 1862
Joined: May 2012

Molly,
Hello ! How are you doing ? I'm new this site....am also 6mo's ACC survivor. You are at the right medical facility....have heard wonderful experiences with it. And also know of several people as of today, trying new trials for mets. Please let me know how things went. Also ACCOI and their sister site ACCRF....good source of info. You probably know this already....but just in case. Hugs are sent Katie

Pascale2014
Posts: 1
Joined: Sep 2014

Hello there,

My name is Pascale.  After my mother was diagnosed with ACC - sinus cavity/orbit and dura, I joined Adenoid Cystic Carcinoma Organization International.  They helped my family out tremendously and I cannot say enough about the group of survivors there.  I see some of you here too:)  If you need more information about ACC, please visit www.accoi.org and join the private yahoo group or you can see their public facebook page too - ACCOI The web site is full of incredible information, treatments/radiation types/side effects/ lung met treatments and so forth.  

There is also a list of ACC knowledgeable doctors on the site listed by country/state/city. First and foremost...

 

Pascale

 

 

 

katenorwood
Posts: 1862
Joined: May 2012

Hello Pascale !

You have so much insight to share please stay with us when you can !  Everyone this is a wonderful gal I met on the accoi site I've written about in the past !  Wonderful information to share about various tx's available.  So nice to read your post, thank you !  Hugs sent !  Katie

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