#44978 05-30-2005 06:59 AM | Joined: May 2005 Posts: 3 Member | OP Member Joined: May 2005 Posts: 3 | Hi everyone,
After a surgery ,i am now in radiotherapy treatments (IMRT) for a sublingual glands cancer. I just discover over the web that it is called "Adenoid Cystic Carcinoma (ACC)" type of cancer. It is written that it is kind of rare.
As of today, i have done 10 treatment out of 33. Since two or three days, i am beginning to sense soreness in my mouth and throat. But still able to eat almost as normal with smaller bites. Since the beginning of the treatment, i am using the doctor's recommended toothpaste, solution of salt and baking soda to rince out my mouth with and the floride thing for my teeth (Look like a boxer when i do that).
So far so good ! I wish that i am encouraging toward those who have not begin yet or at the beginning of the therapy.
Have a good day.
Stage I Adeno
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#44979 05-30-2005 02:17 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello Stephane,
Nice to hear you are tolarating the treatments so well. I also had IMRT and had no mouth issues at all. I was one of the lucky ones from what I've read about on this forum. No burns on my neck, etc. Keep your chin up and soon your treatment will be over.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#44980 05-30-2005 04:30 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2005 Posts: 497 | Hi Stephane. I am glad to hear you are not having many side effects of the radiation. Mine will not start until sometime the end of June so I am hoping they are as light as yours right now.
Wishing you all the best. Check back in and let us know how you are doing. Blessings, Barbara~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#44981 05-31-2005 05:26 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Hi Stephane
You are doing so well. The salt and bicarb mouth rinse helped me also. I was one of the fortunate ones - no feeding tube or major burn issues. Best wishes for your remaining treatments.
Love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
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#44982 07-01-2005 06:08 AM | Joined: Jun 2005 Posts: 53 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2005 Posts: 53 | Stephanie:
I was so encouraged to read your post. My sister has cancer in the Parotid gland and I'm hoping that based on where they have to hit her with the radiation, she will escape major side effects as you did. Can you tell me about fatigue? And also, did you see a dentist beforehand? I read several places about teeth having to be pulled but is that because they are trying to radiate the tongue? Lots of questions - sorry. My sister doesn't have a computer so I'm trying to learn all I can.
Robin
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#44983 07-01-2005 07:03 AM | Joined: May 2005 Posts: 3 Member | OP Member Joined: May 2005 Posts: 3 | Hi Stephanie,
I am almost finish with my radiation, the last one of 33 is monday. I lost about 20 pounds on 167. I still in a reasonable shape. My gum is the worst part, i have some pain but nothing to be crazy about. I still eating, but it must be soft to eat. My skin went dark (like a very good tan) and dry where i got my radiation. I have a cream against burn to put on it every day. My oncologyst was worry about my lips and skin, but everything went pretty good.
They are using IMRT with me, it is a way to send radiation more precisely to avoid the thyro
Stage I Adeno
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#44984 07-02-2005 09:15 AM | Joined: Apr 2005 Posts: 44 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2005 Posts: 44 | Dad finished 27 IMRT treatments yesterday and his side effects were not near as bad as some of the folks who post here. He's had pain & dryness, of course, but never stopped eating (although now it's mostly Ensure plus very soft foods) and lost only 3 pounds through it all. He uses all the recommended products and especially has found the Biotene chewing gum to be of help to him to stimulate saliva. The worst has been him sitting up to sleep for 4 weeks because of the phlegm which causes coughing. He wishes the RO had agreed to give him the "patch" for pain sooner as he does much better with it than with the morphine. Patch is Duragesic w/ Fentenyl and adheres to the skin and is changed every 72 hours. He's been fatigued, but not debilitated. We went to a Cubs game a week before his treatments ended and he managed to have a good time. Hang in there!
Daughter of 75-yr-old Dad with tongue cancer (T3NOMO) surgery and rt neck dissec 4/27/05; completed 27 X IMRT on 7/01/05; recurrance w/ surgical removal of another SCC tumor on 10/7 (he's also nonHodgkins lymphoma survivor since 1/94)
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#44985 07-03-2005 08:33 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Bellarte Does you Dad have a humidifier in the room ? We found that to be a big help and also the Yankuer suction machine was very helpful in getting rid if some of the mucous. The suction machine was provided by our home health care people. Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#44986 07-13-2005 02:55 PM | Joined: Apr 2005 Posts: 44 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2005 Posts: 44 | Thanks Marica, yes he uses humidifiers I bought him (in every room--he wanders alot at night). I'll check out the suction machine. He used one after surgery while still in the hospital and that helped alot.
Daughter of 75-yr-old Dad with tongue cancer (T3NOMO) surgery and rt neck dissec 4/27/05; completed 27 X IMRT on 7/01/05; recurrance w/ surgical removal of another SCC tumor on 10/7 (he's also nonHodgkins lymphoma survivor since 1/94)
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