| Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | In the past 4 weeks I have completely lost my ability to swallow. I ended up in the hospital with aspiration pneumonia and 9 days later, they are giving me a PEG tube and nothing more by mouth, even water, the rest of my life. I'm still in shock.
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
| | | | 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 | Oh Ed!!!! I am so sorry!!!!
Having a feeding tube for life is awful. If I can be of any assistance dont hesitate to contact me. I have lots of tips I can pass along if you need help with it.
Please take good care of yourself.
(((HUGS))) 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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Dear Uptown,
I'm so sorry this has happened to you. I suppose you have had a swallow test to confirm that you are indeed aspirating. This is, in my opinion, the worst side effect of radiation for head and neck cancer patients. Silent aspiration is insidious and hence extremely dangerous. John had it and he kept getting bacteria that normally are not found in the respiratory system in his lungs. He literally was on antibiotics non-stop. It is way safer not to swallow even sips of water because they can go down the wrong way and you wouldn't even know.
John and I struggled with that continuously and it is very hard to know that another member of the forum has fallen victim to it too. I hope you will find a way to come to terms with it eventually. I wish you all the very best.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2005 Posts: 118 Likes: 1 | I am sorry that becoming a "tubie" is a part of your new normal. I too am on a permanent PEG, five years this month. I hope that, once the shock and disappointment you feel at having your world turned upside-down have abated, you will find that living with a PEG is not so bad. I enjoy preparing food for myself ~ the textures, smells, chemistry of blending. I still relish having meals with friends and family, whether at home or in a restaurant. I do use a syringe and bolus feed, which allows for ease of movement and travel.
I note your dx of COPD: I have the chronic, progressive lung disease Bronchiectasis. Aspiration for those of us with lung disease, as you know, can be deadly. Let's keep on living! A PEG introduces a new challenge, as much emotional as physical. As I have followed your posts I have come to know a guy who can continue to "live life LARGE."
The Inspire website has a great online support community for those of us with feeding tubes, and there is plenty of good information elsewhere on the web. Let me know if I can he of help.
Be well. Zenda 12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Ed, I am so sorry. I do think that once you get your head around this, as Zenda says, it won't be too bad. We are all creatures of adaptation. You have had to make so many adaptations and adjustments to how you live your life already. Think of this as just 1 more. Life is worth it, I know that you know this. Think how creative you will be with your Vitamix! Think how much easier breathing will be. Life without infections and all that goo! I know that there is no quit in you. 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!
| | | | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | Ed, I believe you and my husband started into all of this about the same time. He is facing the same issue as you....feeding tube only for life. He is currently on a NG tube and anxious for a PEG tube to be installed this Friday (he had a PEG tube 2 years previous, but it became embedded, aspiration pneumonia (yet again) followed, and thus the NG tube while waiting for stomach to heal for a new PEG tube. Amazing to me how perspectives can change. Now he is anxious for his PEG tube, since he hates the NG tube. Anyway, just wanted to let you know that you are not alone.....misery loves company, right?
Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Uptown, that's bad news and my heart goes out to you. I know you will get used to the peg in time but what a huge disappointment for you.
Best wishes Maureen
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | Ed, I have been looking for an update from you, of course, hoping for better news.
This is all so difficult... I hope it helps a little that we understand the trauma of trying to adapt to so many changes.
Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | Joined: Dec 2014 Posts: 55 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2014 Posts: 55 | Uptown, I will be having you in my thoughts and prayers for sure. I hope the transition goes better than expected and it just becomes a new normal as many of the past issues. It is so terrible that the long term survivors have to face such horrid effects.
Jeff - 41yrs old/previous smoker SCC buccal mucosa/jaw bone Stage 4 Nov '14 Partial Mandibulectomy with fibula flap, neck dissection Jan '15 Rads x35 Cisplatin x2 Apr '15 PET/CT concerning area Follow up MRI no mass. July '15 PET/CT 11mm nodule in right lower lobe the lung. Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules Nov '15 erbitux Mar '16 CT tumors are growing again, waiting on next step June'16 hospice had 3 Opdivo infusions trying to regain health
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Thank you, everyone. Ironically, 3 days with not even water by mouth and the lungs have more secretions than ever. I'm back on the suction machine. The pulmonologist says it is due to fibrotic tissue damage to the left lung, some during treatment, some from the neuromuscular breathing issues, some from the lungs being swollen all the time and some from the constant cycle of aspiration from COPD and breathing problems from aspiration.
Baylor Hospital Dallas is beginning a new swallowing boot camp with MD Anderson so I'm going to try. The throat muscles just stopped, the epiglottis on the left is now paralyzed and the left false vocal cord is paralyzed. I'm back home, alien in hand with constant feeding and hydration over 19 1/2 hours a day. I can honestly say, this is much easier to handle without the chemo and radiation.
A gentle reminder to everyone...live life large today. Tomorrow has way too many question marks! Thanks, again, and remember, because this happend to me, doesn't mean it will happen to everyone.
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
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Love You Brother. You are always learning and teaching. And yes today needs to be "Large!" enjoy it.....
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | just catching up and so very disheartening to hear the news but thank you for sharing here. I wish there is something more to help other than some gentle words. I can say you have been and remain in my thoughts every day. Take care Ed.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I missed all this love! I owe y'all an update. 7 months in and except for 1 trauma incident with a little child running by me and getting caught on the tube and 2 little stoma sores, it's been going fine. I am having a little motivational deficiency with my gym activities but it's going good about once a week. I climbed back to 18 mph a couple weeks ago, even. I have also consulted with a voice specialist ENT and he thinks some filler injections on the left vocal cord would bring it back to center which will stop the constant aspirating and he is pretty confident I will regain all of my voice back. Plus, he thinks with all the weakened and atrophied throat muscles, he can stretch the upper esophageal sphincter and allow me to increase comfort eating. I went through 14 weeks of swalow therapy from an SLP that was part of the boot camp program from MDA.
I took a trip to Colorado and ended up in cardiac ICU with pulmonary edema, sodium depletion and aspiration pneumonia. We were going camping and at 8,000 ft all hell broke loose. My O2 sat tanked and dropped all the wat to 52% but we made it to the ER just as the fever shot up.
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
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Uptown,
Thanks for the update. Good to,know that there is a possibility that some of the issues can be resolved. KEep well, friend.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | |
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