newly diagnosed adenoid cystic carcinoma

jennvelz

I am 23 years old and was recently diagnosed with Adenoid Cystic Carcinoma (left parotid gland) less than a month ago. I had a parotidectomy and will soon begin radiation treatment for 6 weeks, 5 days a week. I am not sure what side effects to expect, and the doctor believes I won't be effected much, but I have read about the possibility of mouth sores, dry mouth, weight loss, change in the taste of food and appetite, and fatigue. I am also concerned because I am in a 15 month accelerated BSN program and hope that the side effects from treatment won't hinder my ability to stay on track.
If anyone could give input on the side effects with this type of cancer, I'd really appreciate it. Thanks

jim and i

Side effects you listed are
Side effects you listed are all side effects from radiation to the head and neck area. One thing you will hear alot on this site is, "everyone is different". My husband suffered ll of these side effects, some to a greater degree thaan others. Other than taste and weight loss they came at the end of treatment and some only lasted a short time. I do not know what the accelerated BSN program is so I can't say if treatment will effect it or not.

Welcome to the site. Many great people here, they have been a God send to us. Sorry you are having to go through this, especially at a young age. I am praying for you.

Debbie

Kaydub

side effects of radiation
I was diagnosed with ACC in submandibular salivary gland in Nov 2010, had radiation 5 days per week for 6.5 weeks. the initial treatments seemed to have very little effect, I did notice I was fatigued very easily. Needed to take naps often. LIttle by little my taste buds started to go, dry mouth, extremely sore mouth, sore throat, had trouble sleeping, was exhausted all the time. I had to stop working for the last two weeks, and for about 2 weeks after treatment ended, the effects continue even after treatment ends. Head and neck treatment effects can be excruciating, so don't try to take on too much. I didn't have a feeding tube, but it was nearly impossible to eat. food looked so good, smelled so good, I was starving, but the taste was awful, and it was so hard to swallow anything. I did lose about 15-20 pounds. I kept a log/journal so to speak, if you are interested I can give you the link, it might be helpful. I am feeling great now. only effects I still have are dry mouth and still tire more easily than before, but getting better all the time, my taste buds are still not back to normal, but are much better. I used to LOVE spicy foods, but even ketchup or BBQ sauce burns my mouth now. I had a raspy voice for months, but it is finally back to normal now.

Kathy

JKMDean

ACC
Like every one is saying, each person has their own experience. I also was diagnosed in July with Adenoid Cystic Carcinoma (left parotid gland). Tomorrow is my last treatment, I had 33 all total. This has been my experience and I'm not saying that yours will be the same.
Most of my side effects started around the 3rd week of treatment. Because the radiation also hit my brain stem, I experience ongoing nausea and fatigue. Twice during the treatment plan, a friend had to pick me up and take me home. The fatigue was amazing at times. I laid down for a few minutes one day and those few minutes turned into 5 hours! I had hardly any sores on the inside of my mouth but for the last week and 1/2 my saliva has been very thick, making it difficult to swallow. There are remedies you can use for that. Biotene has a special toothpaste for that as well. You will want to use something like XClair on your neck and ear to maintain your skin there. I developed blisters behind my ear and didn't even realize how bad because I have no feeling in my ear.
As far as school, I can't tell you how it will be for you. For me, there is no way I could have kept up with my classes. I worked 1/2 days for the last 2 weeks of my treatment because I was so tired. It could be different with you.
I hope this is not discouraging to you and I hope your treatment goes really well!
Jennifer

Hondo

JKMDean said:

ACC
Like every one is saying, each person has their own experience. I also was diagnosed in July with Adenoid Cystic Carcinoma (left parotid gland). Tomorrow is my last treatment, I had 33 all total. This has been my experience and I'm not saying that yours will be the same.
Most of my side effects started around the 3rd week of treatment. Because the radiation also hit my brain stem, I experience ongoing nausea and fatigue. Twice during the treatment plan, a friend had to pick me up and take me home. The fatigue was amazing at times. I laid down for a few minutes one day and those few minutes turned into 5 hours! I had hardly any sores on the inside of my mouth but for the last week and 1/2 my saliva has been very thick, making it difficult to swallow. There are remedies you can use for that. Biotene has a special toothpaste for that as well. You will want to use something like XClair on your neck and ear to maintain your skin there. I developed blisters behind my ear and didn't even realize how bad because I have no feeling in my ear.
As far as school, I can't tell you how it will be for you. For me, there is no way I could have kept up with my classes. I worked 1/2 days for the last 2 weeks of my treatment because I was so tired. It could be different with you.
I hope this is not discouraging to you and I hope your treatment goes really well!
Jennifer

Hi Jennifer

Just like to welcome you to the family here on CSN. Glad to hear tomorrow you will cross the finish line and become a survivor.

Wishing you well
Hondo

JKMDean

also
Also, I did lose my sense of taste which was very frustrating since I could still smell. I have lost 12 pounds because I can't eat anything right now. I am obsessed with Food Network and they say that the obsession is your brain trying to give you an appetite so you will eat. It is just frustrating to me, lol.

JKMDean

Hondo said:

Hi Jennifer

Just like to welcome you to the family here on CSN. Glad to hear tomorrow you will cross the finish line and become a survivor.

Wishing you well
Hondo

YAY!
Thank you Hondo, I am very excited for things to get back to normal. I feel like my life has been on hold for quite a while now!