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#170823 09-10-2013 02:28 AM
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Pedro Offline OP
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Hi
I am 55 years old and have just had 2 operations and have had 1/2 of my tongue removed.
This the first time I have ever used a forum to discuss my anxiety's , today I was supposed to have my first radiation treatment , what a disaster to say the least.
I could not stand putting the tongue depresser with a cut off 15mm barrell from a syringe for breathing my mouth and then putting on the mask, I ended up a little upset and left without any treatment taking place.

I am going to try again tomorrow , but after reading so much , I can't understand why I have to use the tongue depresser , hoping my RO will not make me use it after seeing him before the treatment takes place, the wonderful nurses are recommending some medication to calm me down.

This is a great site and I hope to get strength for you other users, just writing this post is helping.

Best wishes to all.





Pedro #170827 09-10-2013 04:35 AM
Joined: Oct 2011
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Hi Pedro, I'm sorry you're going through this. Like many others, my brother found the mask and the locking down for radiation very traumatic. He was greatly helped by anti-anxiety meds during treatment and I would strongly recommend you follow your medical advisors if they suggest the same. You must have the radiation, and medication will help make it tolerable. Very best wishes to you. Linda


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
Pedro #170828 09-10-2013 04:37 AM
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Welcome, but sorry that you had to join. Before cancer, I never went to any support group, FB, and didn't join one until a year after cancer in 2010, and here just a year ago, which makes all the difference since I felt like the lone ranger, and didn't know or speak to anyone about my type of cancer, which is tonsil or oropharyngeal cancer. It's good to do so, and hear all the different input, support, and up to date medical news, procedures.

You're not the only one who had difficulty with the mask. Some take anxiety pills to help. I didn't, but not saying I couldn't use them, but the pain pills I was taking helped. If I didn't have cancer, I would have went for a stiff drink right afterwards lol. Some play music or can bring your own cd disk to play, some meditate, use visualization. I counted my zaps to keep track, know when I was nearly finished. Whatever helps get you by use it. It does get easier after a while. I kept a wall calendar at home, and after each day put a big X in the box, which somehow help get me through.

The tongue depressor is used to keep your tongue immobile since you are getting the most radiation in your mouth, so it doesn't interfere with the radiation direction or keep zapping your tongue.

Good luck.



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






Pedro #170830 09-10-2013 05:00 AM
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Welcome to OCF, Pedro! Im glad you have found our forum to help get you thru these rough couple months. We will help you with both medical info and also moral support. Everyone can use a hand while going thru this. It can be overwhelming to say the least. Many will end up taking anxiety meds or seeking out a therapist to talk with to help get thru it. Even some caregivers need those things too. Its nothing to be ashamed of. We all understand and have been in your situation so we do know how bad it really is and what you are going thru.

Wishing you all the very best with todays treatment.


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
Pedro #170853 09-10-2013 12:21 PM
Joined: Jun 2013
Posts: 262
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Hi Pedro, I had my first radiation treatment a week ago. Taking an anti-anx med definitely helped -- for starters, I didn't have to worry about panicking. I decided to take the med for the first week, even if I thought I didn't need it. I forgot to take it Friday and surprised myself by being okay.

Another thing I think about is how many people here -- amazing people -- have been through it.

You can also ask the techs to talk and give you updates on how long, that thing's are going great, etc.


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Mamacita #170888 09-11-2013 02:49 AM
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Pedro Offline OP
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Hi Mamacita. I had anti-anx med and went through it ok this afternoon . My RO explained to me this is a common anx a lot of people go through and not to stress there was always plans
Thanks for your reply, it was amazing and up lifting today when a lovely little old lady noticed my apparant nervous apprehension and said hello " is this your first time" in a matter of minutes everyone joined in for chat / smile or just a g'day . it was like being welcomed to special club.
When it was my turn ,a reassuring good luck from my new mates and 20 minutes later all over red rover.

ChristineB #170889 09-11-2013 03:15 AM
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Pedro Offline OP
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Hi ChristineB, thanks for reply and offered support, after talking to my RO this morning and having Anti-anx meds did help,the biggest boast today came from others having treatment today. Especially the little old lady ( her son said she was 85) she smiled said hello , it will be ok boy and then everyone else waiting joined , it's amazing how people can bond so quickly and support each other.
So I have now had my first successful treatment, the journey is now started.
Cheers thanks for your kind words

Pedro #170907 09-11-2013 10:10 AM
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Pedro, good luck on your journey. The mask and radiation was the hardest part for me to overcome, too. Afterwards they asked if I wanted the mask to take home and I said no way! Now I wished I would have kept it and used it for target practice! It has been over 11 years since I walked your path. You can make it too! Prayers and love, Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
Pedro #170911 09-11-2013 11:18 AM
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Great news. The mask is scary, so is the giant rotating ring that buzzes. But now you have been thru it, it does get easier. Its a long 15 min and there is not much you can do. I tried counting the zaps. However even after 35 trys, I lost count every time. I still don't know how many there were.

Now that you started, promise your self you will finish. Yes it is important.

Pedro #170912 09-11-2013 11:50 AM
Joined: Aug 2011
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ngk Offline
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Glad you have such friendly people there surrounding you. I'm in my second week and listen to music. They have sound system and i just stick my iphone in there.Three songs...and treatment is over. The music is very very helpful to me. I had so many problems with my tongue depressor during simulation, so...I took it home and practiced unti I was able to get used to it while breathing calmly through my nose, while listening to my favorite music. Maybe this could help you....?
Best of wishes to you Pedro.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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