| Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Well Sone - you just made my day!! I was so worried about you stopping treatment. Just think to yourself that each one you get through is one less you have to get through.
Don't be "strong" or "suffer in silence". Grab ahold of pain meds until they work. Even if you basically sleep through the next 18 - that would work too! The important thing would be that you got through them.
Going back - feeling as you did - could not have been easy and I applaud you! Congrats. Post ever day and let us know how it is going. We're here FOR you!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | 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 | Congrats on going back. Thats the spirit, I am so happy to see you trying again. Cancer and its treatment is just plain awful!!!! Without treatments you wont make it.
Do the best you can and go everyday. Its what it takes to beat this. Now you can proudly say you have gone thru 15. Day by day, hour by hour if necessary, just keep going and get it over with.
Please lean on us if you need to, just dont quit.
I think I missed 1 day of radiation due to being so sick. I had to make it up at the end.
Best of luck with your continued treatments. 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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | My treatment was stopped for about a week (after the first few treatments). Upon inserting the PEG they saw (or though so) additional suspect areas. This meant that they had to redo the calculation and increase the irradiated volume. There were also other issues at that time...... I suggest you watch out for thrush, and consider using viscous lidocaine for short time relief...
Best
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Hurray for you Sone! I'm so relieved you went back, I have been worried about you! Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | Joined: Jun 2009 Posts: 13 Member | OP Member Joined: Jun 2009 Posts: 13 | Treament #16 finished. 17 to go.
You all are so concerned about a total stranger. That's just amazing to me.
I have lots of experience with Thrush, I'm pretty confident I don't have it right now. The Magic Mouth Wash, or swish and swallow, or GI cocktail, whatever you want to call it, has Nystatin as one of its ingredients. Some of you are talking about Diflucan, which I've taken in the past, as a maintenance dose. Do I need to ask for that prescription now, before I get thrush, or do I have to wait to get the Diflucan until I come down with the Thrush? And is that in addition to the Nystatin that's in the swish and swallow?
The burning pain I have is inside the left side of my tongue (the side being radiated). It's also in my cheeks and lips. My cheeks are so swollen I look like a chipmunk. And heat just emanates from them. Sometimes I put a cold cloth on my left cheek just to remove some of the heat and try to reduce the swelling. Is there a better way to remove the heat, swelling, and burning pain?
I don't have a PEG. Got very close to getting one last week, but once the new pain meds started working, I was able to get in 4 ensure pluses a day. That is maintaining my weight for now--I'm only 108 pounds. Now that I've returned to treatments, my lower throat (base of neck area) is very sore inside. I drink cool water, but nothing but the swish and swallow soothes it, and that doesn't last long. I'm up every hour or so during the night rinsing the mucous and slime out of my mouth and then drinking the swish and swallow for relief. It's a tough way to get a night's sleep, but the Lyrica helps me get back to sleep now, whereas I used to just stay awake. I do use the viscous lidocaine lots too--I put it all over the sores on my tongue and inside of my cheeks and lips before I drink so that I can get it down. It doesn't last long either. I guess this is all normal for this awful treatment. Luckily, the pain management specialist agreed to see me each week throughout my treatments, so I can ask for stronger meds each week as I need them. It hurts more every day. I just hope I can make it!
Sone | | | | 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 | Good job!!!!
Pat yourself on the back for everyday you go to treatment! Its one step closer to being cured.
You would get the meds if you get thrush. Not everybody gets it, Ive had it a few times soe have a standing refill at the pharmacy.
You are not a total stranger. We are a group of cancer survivors and their caregivers who have a common goal. Beating this awful disease. We welcome you to our little family. We support each other and help when we can. I have met in person many wonderful members of this board and am proud to call them my friends. Even some people that I have not yet met are still my close friends.
Keep up the good work and be proud of yourself. You have overcame a big obstacle to keep going.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Oh Sone you brought my tears to my eyes!! I am just so thrilled that you went back to treatment. We are a family here and we help each other through hard times. You can do it and we are here for you. Keep up the good work and just take it one day at a time.
Please keep us posted with how you are doing.
xoxo
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Honey- I am so sorry you are in so much unbearable pain. Everyone's physical reaction to these treatments is different. Some people do in fact have a terrible reaction to the radiation. I do hope that maybe a break will give you some relief enough to go back and finish it. It is important. I am so sorry you aren't getting the support you were anticipating here.
I had tongue cancer too. I know its an awful thing to go through.
I think everyone was just looking out for you because they want the best result for you.
Think positive and please consider finishing if you can.
XOXOXOXO
KATE
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Whoot!! Whoot!! Tomorrow you will be over the 1/2 way mark...you can do this Sone!! We all believe in you. And, we're so happy you are finally starting to get some pain relief! Glad to know you will be staying in touch with the pain specialist! Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | I remember my mid-way point...You keep toughing it out Sone!
And don't forget to stretch that mouth, it will help in the long run.
If you want extra calories try some Carnation VHC that can be purchased through Amazon. It has 560 calories in a very small 8 oz can.
Just keep on using that swish and spit and swish and swallow...I know they helped me.
Don't forget you can request to see a nutritionist at the hospital...
Remember it's one day at a time and we're all here to support your every step....
Hang tough!
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | |
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