#53496 05-12-2004 02:29 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | OP  "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Yesterday I finished treatments, now begins the recovery process....Time line data requested.. How long before I am able to swallow, etc.
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#53497 05-12-2004 04:17 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Darrell,
I think that will depend upon you and how willing you are to push yourself. You may have to take pain meds before eating for a few weeks. I'd wait about 2 weeks before trying to swallow, but if you want to try before then I think that's great. The longer you wait the more apt you are to loose some function. My swallowing is no where near where it was before radiation. The best exercise for swallowing is swallowing. Liquid might be the toughest to begin with.
Congratulations on making it through!!! Remember to be patient with yourself. Measure time in weeks and months rather than in days. You can do it. I'm routing for a quick recovery.
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#53498 05-12-2004 05:58 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Congrats on finishing treatment Darrell. From approx. the 4th week of radiation on I only drank water. I had a tube and made good use of it. I didn't even attempt to eat anything, just drank non-stop water and used the tube. I finished last July 10th and kept and used the tube until December. It was at least two months after treatment that I was eating anything substantial, I kept drinking water so my swallowing function was good, and I did milk shakes, etc. What I also did was stretch my jaw constantly to avoid trismus. I have full range as far as opening my mouth.
Patience Darrell, in my experience the weeks after end of treatment were my personal worst. I expected to eat AND to feel better immediately and that didn't happen.
Good luck to you!
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#53499 05-12-2004 06:02 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | Darrell, I`m gonna say don`t push yourself, give yourself time to heal, everyone heals at a differnet rate, when the docs give you the go ahead, do it,I would not push myself without the docs go ahead, you need time to heal..........Love and Hugs .................Dee | | |
#53500 05-12-2004 06:09 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Darrell,
Congratulations on this major milestone! You have a few rough days ahead of you but once you start eating, times will get much better. I started eating right away but they were trying to eliminate my job at work and the doc wouldn't let me go back until I started eating. I went back after two weeks and I had fried catfish and fried chicken the first day back. It was still mighty tasty but a bit rough without lots of liquid as I ate. I still do that, seven months later.
Water was the toughest thing to swallow and still is. Dr Pepper was all I could drink the first two months and I hear that is unusual from a lot of others. It went down good and soothed my throat. I was drinking about 10-12 cans a day and when I got my blood checked at the ER, I had a blood sugar level of almost 300. They (and I) freaked. I read something about sugar and cancer and I have not had a Dr Pepper or any soda since December. I guess it scared me.
Keep the humidifier going while you sleep. Sip any liquid you can as often as possible.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#53501 05-12-2004 06:25 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Congratulations, Darrell! Everyone's ability to heal is different. For me it got worse before it got better. I never did lose the ability to swallow, but the first week after treatment ended was the worst. Get lots of sleep and be patient.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#53502 05-12-2004 08:58 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Darrell,
Praise God...finally finished the treatments. Dan had two pretty rough weeks after treatment ended, then started to slowly feel better. He began using his PEG third week of treatment and is still using it. He is 2 months post treatment and just in the last 2 weeks has started eating and drinking some. It's a slow process, but coming along. Water is hard but he drinks some by mouth everyday now. He can eat some puddings, a little fruit, had some pasta with sauce and did pretty good with that. He would love it to happen much faster, but as said above, patience is the key!
I am so happy for you!!
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#53503 05-12-2004 09:19 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Congradulations on completing your treatment Darrell!!! When you start eating only you can answer. Each one of us reacts differentely to the same treatment. Your ENT should be able to give you some direction. If you can swallow by all means start eating some soft foods, I started with a big bowl of homemade chicken soup. It was really good plus soup goes down easy. The more you eat the better off you will be. No better exercise for the throat mucles than using them. Beware of a getting down when you end treatment. It happens to many of us. What Now???? I'm on my own!!! Thankfully you can vent and ask questions here that will help you.
Your Friend, Dan
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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#53504 05-12-2004 09:33 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Well done Darrell
The only way now is up.. good to hear your news keep us posted... look after yourself
hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#53505 05-12-2004 11:25 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Isn't it so exciting to hear of someone completing treatment!  Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#53506 05-12-2004 12:42 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Congratulations Darrell, it can only get better now however long it takes you to eat.
My husband had fish and chips last week and only choked once! Happy days..
Good luck and remember to keep the calories up.
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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#53507 05-12-2004 01:28 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 |  Congratulations Darrell, I finished on the same day 2003 and am now doing so well. I didn't use a tube, was able to swallow liquid food throughout. Am doing so well now after an initial slow recovery. I'm off to a restaurant for lunch today confident that I'll be able to eat without any embarassing chokes etc. Small frequent meals seem to be a successful option during recovery. There are recipes and hints for dry, sore mouth on the American Cancer Society site. Best wishes from Helen, with love
RHTonsil SCC Stage IV tx completed May 03
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#53508 05-13-2004 02:59 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | Yay Daryll!!! I am very close also, 6 more radiation including today! I think that most are right about swallowing what you can, at least keep the water going. Chicken noodle soup noodles go down ok. I had a chocolate milkshake last night, only choked some. My ENT said I'm probably better off to keep eating orally anything I can manage to keep things functioning - use it or lose it! The nutritionists have been all over my ass about using my tube, but the formula just doesn't work for me. So I struggle a lot and choke down foods best I can, but I think I'll be stronger in the long & short run.
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#53509 05-13-2004 03:20 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Thanks all, I can feel the love and concern. Upward and onward....My attitude is excellent.... The best thing is, I no longer have to travel 200 miles daily for treatments.
Thanks
Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#53510 05-13-2004 05:04 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Darrell-
Congratulations on finishing treatment!!! My doctor also said I couldn't go back to work until I started eating but I just took the pole and bags to my office and let the fluids drip for 45 minutes at lunch while I worked away!! I was back to work two weeks past treatment part time. Water didn't work well at first, but Starbucks frappachinos did and rice or tapioca pudding. Swollowing came back pretty quick but it took a few months for the taste to return. Medical coverage was my biggest motivator in returning to work. If you can afford the luxury, take it slow. Good luck! - 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 :-)
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