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#149907 05-22-2012 07:05 PM
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I posted this in the after treatment forum but I suspect this will be a great place for it as well, so here goes.

First, let me say I am so grateful for this site. My dad was diagnosed with oral cancer (base of tongue) in March 2011 at a stage 3. Primary tumor and in two lymph nodes on the left side. He was briefly cancer free until a new tumor was discovered in March 2012. The cancer has reocured on the base of his tongue and in two lymph nodes although they were considered "encapsulated" whatever that means. He just had his most recent surgery on 5/10/12 to remove microscopic tumors that were left after the first surgery in late April 2012. The surgery was quite extensive and he can no longer swallow. They used a pectoral muscle to reconstruct the tongue and a place in his jaw where the tissue was too irradiated to hold a patch (from the less invasive April surgery) and heal properly. We are so terrified that he did this in vain and he is really depressed. He has a trach and a feeding tube (stomach). He failed the swallowing test he took Friday and they did not detect a swallowing or cough reflex. They recommended speech therapy. He is understandably devastated at this news and wants the trach out ASAP. I guess I want to ask other survivors and care givers if this scenario ever happened to them and if they or their loved one were able to swallow again and eat. I also would be curious about the effectiveness of speech therapy and how long it took them to learn to swallow again. I realize every case is different and has many different possibilities but I want to give him some hope because he feels like giving up and it is tearing my heart out. Thank-you so much for any and all advice you guys may have. I love all the useful information on this site and everyone seems so kind:)I am sorry if my terminology is not correct and there is not enough detail. I wish none of us had to deal with this awful disease. Thanks in advance for taking the time to read this post.

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Just1Lyzz #149908 05-22-2012 07:25 PM
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Everyone is different and will recover at their own pace so its very difficult to predict. Its even harder since we arent doctors with your fathers medical chart to read. For most of us it can never be fast enough. Speech therapy can help him and also make sure he is safe to eat by doing barium swallow tests. This is a very important test to make sure when he eats and drinks it doesnt go into his lungs instead of his stomach.

Recovery from a major surgery like your father went thru can take a year or more. Ive seen a few lucky patients bounce back in about 4 months but most of us have taken 8+ months. A diet high in protein will help his body to heal.



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
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Please use this forum for any questions you have. I haven't really posted anything yet, but have just been reading getting new ideas. I had a trech for about 6 months and it really was difficult for me to deal with. But I learned how to talk with it and was able to drink little bits of water. I was elated when I could do that which didn't take much time. He will get his nurishment through the feeding tube. I still have one and it has been over a year. I hope to swallow again in the future but the biggest thing you can tell him he is alive and has made it and it may take a while but he has to take baby steps to get his health back to where it was. Let him know we are here to help both of you. I hoped I helped a little.
Robin


10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
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Hi, Kris had a reocurrence of his base of tongue cancer 12 months post diagnosis . In March '12 he had a total glossectomy and Laryngectomy. Kris has a permanent tracheostomy, he also has a PEG feeding tube.
He is able to swallow and takes half his nutrition by mouth. He just sort of pours it in, tilts his head and down it goes. The Speech/swallow therapist told us she has no idea how he does it as it it goes against all she has learnt about the muscles used when we swallow. Kris wont do this in public as he thinks it not only looks weird but that he dribbles some. Somedays I have to nag him to swallow. To me, how he swallows doesn't look to different to someone who is thirsty and swilling back the fluid. However Kris does struggle with it. I think this is just because it is so different to how he has normally eaten.
Depressed? Of course. Anyone who has gone through such a major bodily insult with such huge lifestyle changes as a consequence will take a longish period to adapt and accept.
I have nurtured and encouraged Kris all the way, but now it is time for me to step back and let him get on with it. He has to learn to cope and manage his own cares. He will only become independent by doing for himself. Is this difficult? Yes, for both of us but I have to be cruel to be ultimately kind. We are nearly 3 months postop. He has to take charge of his life. Sometimes I feel quite guilty when I leave him too it, but I believe that this is the only way for him to accept and cope and adapt. You know what? He is taking charge and coping - mostly. Your Dad will too. Just continue to encourage and cajole and know that this takes time. It is not easy, a hell of a road really. Just be there and let him know he is loved and wanted. Thinking of you all.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Just1Lyzz #149985 05-25-2012 06:08 AM
Joined: Mar 2008
Posts: 3,082
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I feel for your Dad. As far as hope goes, let him know that even if he never is able to swallow again and is on a permanent feeding tube, life can still be good.
Speech therapy is very helpful - and the SLP can also do swallowing exercises or provide electrical stimulation.
While none of it worked for me, it's a good feeling to know that I tried everything for over a year although it is depressing if it does not work in the end. Go with him to session with a trained speech language pathologist (SLP) who also has training in swallowing disorders so you can get a tentative prognosis of recovery. The important thing for your Dad to realize is that while it may feel like a disaster, it is not the end of the world to lose the ability to swallow. of course, I hope he does bounce back .
keep the faith
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Just1Lyzz #150047 05-26-2012 08:56 PM
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I am overwhelmed by the support you guys have shown. Thank-you. I will pass along everything you have said to my dad. He had a follow up appointment with his surgeon on Thursday and his surgeon said that although he couldn't guarantee it 100% he feels that my dad will be able to swallow again. This seemed to make him feel better and he has a smaller trach now ( he got it at that appointment). I have encouraged him to look at this site and I hope he will. Right now he is trying to get his strength back. There is so much beauty in life and I am sincerely hoping that he sees this beauty in his grandchildren and the unwavering support of my mother and his children. I wish that everyone could recover from the dreaded "C" word with minimal issues, but sadly that is not the case. Instead patients and their families adjust to the "new normal" and do the best with what they have. I wish everyone on here the very best and thank-you all so much for the kindness you have shown by reaching out. It means so much")

Just1Lyzz #150058 05-27-2012 07:19 AM
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Sorry about your dad, but the hope is here in the pages of this forum. The people here, some of whom are caregivers are miracles in and of themselves. Some of them have faced incredible odds and beat them. Not only that they've adapted to living life, bearing the cross OC has given them - lack of swallowing ability, permanent visible scarring, disfigurement, trismus, hearing loss etc... But they've done it with incredible grace. As John of arc put it - if I can talk and sing, I dont care if I can eat or taste... It's all about living life to the fullest every day... Hugs!


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

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