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#134635 05-26-2011 11:10 PM
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Hi Iam a new member and Iam 51 years old. I was diagnosed with tongue cancer and they removed it.The cancer mastitized to one lymph node out of 25 that they removed. I now have to start radiation on both sides of neck to just below my collar bone and Iam scared to death of the side effects. They made a mask to screw down to the table to hold me in place and that is scary also. Can anyone fill me in on what to expect? Help!


squamous cell carcinoma,removed part of tongue and lymph nodes on same side.Starting radiation in one week.Scared to death and also feel alone.
sherry1564 #134643 05-27-2011 05:17 AM
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Hi sherry - your story sounds similar to mine. Christine will probably be a long to tell you to start a new thread so new members can welcome you individually. But I will welcome you now. Sorry you have so be here. Just to share I too was in your position a few months back - I am 3.1 weeks out of radiation and chemo.

Try not to worry. Radiation is no walk in the park but if you do what they tell you (use your skin cream from the beginning) keep a close eye on your oral hygiene, no antioxidants - this should help with the treatments and the aftereffects. also do your best to eat by mouth as long as possible (even if it's just ensure or boost). I managed to take my nutrition and fluids in the entire time, though there were a few days there that it was mighty hard. Most people do get pegged - if they suggest it... Do it. It's best to have it in whether you need it or not. Eat as much as you can now to bulk up. And try to maintain high calorie and lots of fluids during treatment - don't want to dehydrated.

You will hear a lot of scary things about radiation but please try to remember everyone has their own path. I was fairy fortunate in that i didn't have a really hard time with it until I hit treatment 30. Usually it starts to get hard around week 4, and continues to get worse until 2 weeks after. This is very very true in the two weeks following.

The treatments itself are painless, though I can say from day one I could feel the tightness in my throat. I did the exercises they suggested for maintaining flexibility and swallowing for as long as I could. Then started again once I began to feel better.

With regards to the mask.. Not fun... But its a relatively short time in the room, so I used to close my eyes and meditate, and I would listen to the music they put on. It helps you forget. And right after each treatment i would head to the bathroom rinse, gargle and spit with the baking soda/ water/ salt mixture they suggested. I rinsed a lot actually during the day, particularly after eating.

If you are interested search out the postings on Manuka honey here on the board - you can type it under search, or go to adjunctive therapy. I used it from week three on (would have used it from the beginning had i known about it) it helped me greatly with the mouth sores.

If you need pain meds there is an abundance they offer you. There is no need to suffer - use it if you have to - I was fortunate In that I only needed codeine for a few days at the end, and some oxy for about 5 days after treatment to get me through the worst of it.

The worst thing I found about it all was the crazy drooling after treatment, of course the pain, & the lack of taste. That makes it hard to continue eating, even if you can physically.

I would like to say - it's not fun... It is hard - I won't lie - but it is doable. Try not to worry - It does go fairly quickly- though it doesn't feel like it at the time.
Best of luck, try to stay positive you can do this. I'm sure there will be someone else along to fill you in on anything I missed.




Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #134648 05-27-2011 06:56 AM
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Please keep one thing in mind... The 1st radiation treatment is the HARDEST. Every single one after that gets easier and easier. You be fine. Stick around. Will


Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
MaineWill #134649 05-27-2011 07:04 AM
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Sherry, yes Cheryl is correct. You should begin your own thread so it doesnt take away from the original posters. I have sent you detailed instructions in a private message. Im also moving yoru post as the original posting member should get the attention they deserve.



Christine
SCC 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 smile
ChristineB #134652 05-27-2011 08:54 AM
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Sherry, I know you're scared but I want you to take heart in this: many, many of us have gone through what you're experiencing and we're here to help you. The operative words there are "we're here". (and the helping part is true too!)

Cheryl's advice is great and very complete. There are tons of threads here about all aspects of the radiation experience. Since you're starting RT in a week now would be a good time to search through those threads. I recommend that you do it in small doses - 5 minutes here, 10 minutes there. This can easily get overwhelming and make things even scarier. Which is the last thing any of us wants for you.

I took along my iPod and some small speakers to radiation and listened to music and books. I found it was the best way to get through it. Do you have someone to drive you to treatment? You may find you can do it yourself - I did - but it's nice to have the option.

Ask questions, as many as you can think of. There's always someone here who'll have an answer.

Courage - we're with you!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #134657 05-27-2011 05:06 PM
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Hi Sherry,

You have found the most wonderful resource to help you on your road from patient to survivor--The Oral Cancer Foundation. The patients and survivors here are the most supportive, generous, and kind group of people you could ever hope to find. There is a wealth of information on the OCF site and contained within the OCF Forum.

Please be assured that you are not alone. There are many people who will be here for you every step of the way! As you explore the OCF forums, I hope your worries will soon be displaced by the knowledge and guidance you find.

May peace be yours,

Sandy



Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
Sandy177 #134658 05-27-2011 05:37 PM
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Sherry, I can only echo what everyone else has said. You will encounter the most amazing people here, and we will help you every step of the way. I only wish that I had found this site at the beginning of my treatments. Radiation is no picnic, but you will get through it. God bless you!


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #134659 05-27-2011 06:18 PM
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Sherry,
There are some great posts here. It helped me to take one day at a time, try to let go of the what if's, and make taking care of "myself" as far as nutrition, rest, health appointments, a top priority. Oh, yes, and another help was to find something that could occupy some of my time to take my mind off of cancer, be that reading, watching tv, visiting with friends or family, exercising, or some combination of any of these or your own interest.

And you are most definitely not alone!
Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
AnneO #134706 05-30-2011 03:36 PM
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Hi Sherry. You've already gotten a great deal of great advice so I just want to add my welcome. As for the mask. I have mine sitting like a trophy on the shelf behind me.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Deejer47 #135170 06-10-2011 08:31 PM
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Mask was scary at first and I think I had to stop at the second or third one for a while as it was giving me a panic attack. By the 20th one I would go to my happy place. I also learned to count the movements of the machine and knew that they were hitting 9 places. Unfortunatly for me, at the end I'd lost so much weight that the mask was getting loose enough to be not so uncomfortable.

Keep on truckin', it'll be great.


Mark
BOT Squamous cell, stage IIIa

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