#55600 10-11-2004 01:29 PM | Joined: May 2004 Posts: 15 Member | OP  Member
Joined: May 2004 Posts: 15 | I had cancer in my tonsil and it spread to my lymphnodes. I had a radical neck disection, left side, in October 2003 and 33 radiation treatments that ended end of January 2004. Since that time I have not been able to eat. I had a barium swallow test that showed nothing going down. I had 7 dilatations so far. I also did 29 hyperberic oxygen treatments to help heal the ulceration in my esophagus. I am also undergoing the vital-stim treatments (9 so far). After my last dilatation, I was able to wash down some thick soup. The next day, back to only being able to swallow thin liquids (water etc.). I also have to spit the leftovers. My speech therapist mentioned a cricopharyngeal myotomy, but that may not be an option because my cricopharyngeal muscel may be damaged. There is a stricture and my doc described it as friable. Not good. I don't know if there are any other options. I will continue to go for the dilatations every 2 weeks or so, but I don't know if they will ever work. The doctors aren't giving me any sense of hope for eating again. Any ideas? Thanks in advance.
Jeff | | | 
#55601 10-11-2004 07:11 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Jeff,
I don't have a direct experience with swallowing problems to the extent you are having. I will say that the problems I had did get better over time. I will hope for you.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#55602 10-12-2004 04:21 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Hi Jeff,
I've had a few problems but not to your extent. My swollowing problems were due more to pain for the first 6 months from end of treatment. I was having more difficulty recently with the swollowing (after 2 + years) and after my coworkers did the Himleich manover on me after choking decided to have a few tests run. There was a scare tissue problem I'm working with and making sure I only try very small bites and paying attention while I swallow.
All I can say is DON'T GIVE UP HOPE and keep having it stretched!! Keep swallowing at least something during this time and remember to work at opening your mouth wide. You WILL get back more with time but you may be very frustrated when you can finally swallow regular food but can not open your mouth far enough to get it in!
Keep us posted. We care about your struggle cause we have all been there. - 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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#55603 10-12-2004 05:04 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Jeff
Sorry that you are having such a problem with your swallowing, I'm only 8 weeks out of surgery, but with care I can manage most things, not always sure how though, half my tongue is still numb....
Sunshine... love and 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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#55604 10-12-2004 12:03 PM | Joined: Aug 2004 Posts: 18 Member | | Member
Joined: Aug 2004 Posts: 18 | Hi Jeff,
My husband did not have swallowing problems to the extent you are having, but in the year since his treatment ended his body continues to heal and his swallowing is still improving. It seems you are improving as well in that once you were able to get some soup down. I hope that the next dilation will see the same result! Good Luck!!
Debbie M, husband had tonsil cancer | | |
#55605 10-12-2004 01:17 PM | Joined: May 2004 Posts: 15 Member | | OP Member
Joined: May 2004 Posts: 15 | Thanks for the replay all. I do have that expensive piece of plastic to help stretch my mouth! Next dilatation in two weeks.
Jeff | | |
#55606 10-12-2004 02:34 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Jeff,
I wonder if my second cancer was not caused by the radiation I received. I am now a total largectomee. I developed a tiny tumor in the fold of the esaphagus that could not be detected by by CT or Pet scans, but impeded my ability to eat. This tumor was not visible until they put me under anesthesia and scoped me. I suggest they do the same to you. Please email me rather than private message.
I am in crisis mode right now on my parents, so if I do not respond, please forgive me. If I get your mailing address in time I will send you article. If not, someone else may be a member and can mail to you or you can contact SPOHNC directly but they have a membership fee.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#55607 10-12-2004 03:12 PM | 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 | Jeff,
I am sorry to hear of your difficulties lasting for such a long time. I have not heard of the procedure you are asking about but I did want you to know I will be thinking about you and hoping for success on your next dilation.
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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#55608 10-13-2004 11:49 AM | Joined: May 2004 Posts: 15 Member | | OP Member
Joined: May 2004 Posts: 15 | Eileen: Thanks for the info. I did leave out that I did have another biopsy before my first dilatation. I think the doctor wasn't sure either about the problems I was having. It came up negative. I didn't have your email address. By the way, I'm from Lawrence. Maybe we had the same doctors??? Mine is Dr. Weinstein at HUP.
Take care, Jeff | | |
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