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#192129 03-28-2016 09:32 PM
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Uptown Offline OP
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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
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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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)))


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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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.
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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.
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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!
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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.
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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.
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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
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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
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Uptown Offline OP
Patient Advocate (old timer, 2000 posts)
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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
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