| | Joined: Mar 2011 Posts: 16 "OCF across the pond" Member | OP  "OCF across the pond" Member
Joined: Mar 2011 Posts: 16 | Hi . I am due to start radiotherapy in a few weeks to the right side of my neck and mouth with a dose of 60gy over 6 weeks, I am so scared about the side effects mainly the painful swallowing which terrifies me at the minute. I am being treated for a mucoepidermoid carcinoma in my cheek. Which is t2 low grade . Have already have several mouth operations and neck dissection and I can cope quite well with pain etc . However the radio therapist specialist said the left side of my mouth should not be as bad because they will use blocks to stop it from getting to the left side . As it is my pathology results from the neck dissection had a few positive nodes which I already knew from the lymp mode biopsy the first time . However there are clear margins and as it stands its treated. But consultant said with this cancer it doesn't usually spread to the lymp nodes so thinks radiotherapy is best as a preventative and to give me a longer fuller life being only 20, I was just wondering if anyone else has had the same radiotherapy for this cancer and would be able to shed some light on how bad the mucositis will be and other side effects and will I be able to get on with my daily life . Don't want to be in bed the whole six weeks ... Thanks in advance 
Age 20 Gemma, Dx nov 2010 MEC ,surgery in Dec 2010 , surgery in feb 2011,clear margins , metastatic spread cervical lymph nodes may 2013, modified radical neck dissection, IMRTx30 60gy no peg
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | SOme patients get thru it very easily without too many issues while others suffer greatly. Your age will help you to be one of the lucky ones who should have an easier time of it. Plus you should be able to recover quicker being a younger patient.
The best advice I can give you is to work on taking in at least 2500 calories and 48 oz of water every single day. Dont skimp even for a day. That leads to a viscous cycle of playing catch up and its really not possible to ever fully catch up to where you should be. The catch up will lead to malnutrition and dehydration which will land you in the hospital. Im speaking from experience as it happened to me, several times. So by controlling your intake it will help you to get thru treatments much easier. You do not want to lose weight as it is a sign that you arent taking in enough. In fact, right now if you can pack on a few extra pounds it wouldnt be a bad idea. How well you do has a direct connection on how well you do with nutrition and hydration. I cant stress this enough!!! If you can take more than 2500 calories daily and 48 oz of water, do it. Even 3000 or 3500 calories arent too much as your body will be dealing with alot and need the extra calories.
Hang in there and work on the nutrition and hydration. That should be your top priority for now, well even for the next year. Stick with us and we will help you thru this. Dont be afraid to research things and use this forum and the main OCF pages to educate your self. An informed patient will be able to advocate for themselves. Plus we will help you along the way.
Good luck!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Mar 2011 Posts: 16 "OCF across the pond" Member | | OP "OCF across the pond" Member
Joined: Mar 2011 Posts: 16 | Thanks for the reply I understand that nutrition is a huge thing like you say that's one thing I won't scrimp on especially with a mother that doesn't stop nagging me to eat stuff lol. Thanks for the tip to start putting a few extra pounds on now is a great help to know what to do before hand to help myself thanks very much for all your help its greatly appreciated
Age 20 Gemma, Dx nov 2010 MEC ,surgery in Dec 2010 , surgery in feb 2011,clear margins , metastatic spread cervical lymph nodes may 2013, modified radical neck dissection, IMRTx30 60gy no peg
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Right now is the time to think of all your favorite foods and make sure you eat them all. Your sense of taste will change for a while and swallowing will probably be difficult. So eat and enjoy everything now while you have the chance. It can take months to regain your sense of taste after treatment so go into this without having any regrets or cravings. Yes, gaining a few pounds is a good thing right now
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Mar 2011 Posts: 16 "OCF across the pond" Member | | OP "OCF across the pond" Member
Joined: Mar 2011 Posts: 16 | Defe going to Do that thanks for the advice gonna be stuffing my face everyday now till radiation starts
Age 20 Gemma, Dx nov 2010 MEC ,surgery in Dec 2010 , surgery in feb 2011,clear margins , metastatic spread cervical lymph nodes may 2013, modified radical neck dissection, IMRTx30 60gy no peg
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Just be advised, excess nutrients can also feed cancer, but I did my bucket food list before Tx, still am, three years later.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Mar 2011 Posts: 16 "OCF across the pond" Member | | OP "OCF across the pond" Member
Joined: Mar 2011 Posts: 16 | Thanks that's good to know will try to find a healthy middle ground
Age 20 Gemma, Dx nov 2010 MEC ,surgery in Dec 2010 , surgery in feb 2011,clear margins , metastatic spread cervical lymph nodes may 2013, modified radical neck dissection, IMRTx30 60gy no peg
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