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7 Months after surgery, G-tube dependent #195715
02-10-2018 05:30 PM
02-10-2018 05:30 PM
Joined: Feb 2018
Posts: 12
JonAngel Offline OP
JonAngel  Offline OP

Joined: Feb 2018
Posts: 12
Hi, I'm Jon Angel, 66, recently retired, and very happy to be alive.

I don't remember the letters for staging, but I know it was caught early. One lymph node on the right side of my neck had swollen and felt more rigid. I went in for the fine needle aspiration or biopsy, and the diagnosis came back, Squamous Cell Carcinoma, HPV-related and its marker (?) was P16. A PET/CT scan with contrast media showed only one spot lighting up, a small tumor in the right base of my tongue. First I had a "neck dissection" and all the lymph nodes removed. Then a week later they operated again, with a Da Vinci robotic device, and removed my right tonsil and a "divot" from the right base of my tongue. The tissue from my tongue contained the primary site, but with only a small amount of margin.

I had the frightening complication of an arterial bleed. Apparently a suture or clamp let loose 6 days after surgery. I was bringing up blood fast enough to fill the lap of my gown while sitting up in bed. I already had some aspiration pneumonia from prematurely finishing a popsicle-- they thought I was ok for clear liquids, but I really wasn't. The arterial bleed meant that I inhaled a large amount of blood, and so I was kept intubated and sedated for 5 days after the bleed was repaired. It also meant that they proceeded with the earlier plans to give me a G-tube (PEG tube)

I had 31 days of radiation, delayed by my pneumonia recovery. I've been working with superb folks, an OT on the lymphedema and an SLP for swallowing. My tongue and tissues in my throat are swollen enough that even if I regained the habit of eating and drinking close to normal, it would still be "laborious" to remain well-nourished.

I'm working hard on the lymphedema. I have a set of exercises for Manual Lymphatic Drainage, and two types of compression devices, and I still barely have it under control. It's on the right side of my neck. It's also in my tongue and throat tissues. So if I can find some great exercises for draining the tongue, externally, I will be very grateful.

many thanks, best wishes,


SCC, HPV-related P16 Stage III T1N1M0
(prim. site rt base of tongue, 1.5 cm, 1 lymph node, nearly 3 cm)
Rad neck dissection 5/19/17 no probs
TORS 5/26/17 remove rt tonsil and divot at rt base of tongue
Arterial bleed at surgical site 5/31/17, 5 days intubated and sedated
Asp. pneumonia, hosp acquired pneumonia, DVTs
Tot 13 days in ICU
31 days targeted rad, until 9/21/17
CAT/CT 2/1/18 No evidence of disease
Swollen tongue and throat, diff to swallow
Still G-tube dep
Very grateful to be alive
Re: 7 Months after surgery, G-tube dependent [Re: JonAngel] #195725
02-12-2018 07:13 PM
02-12-2018 07:13 PM
Joined: Jun 2007
Posts: 10,199
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,199
Welcome to OCF, Jon! I was sure I had already written a welcome reply to your post Saturday night. Im sorry but I must not have sent it before I changed pages.

Your post tells us you have been thru alot! Its sure is NOT easy getting thru those treatments!!! When did you finish your radiation treatments?

The recovery phase can be a bit frustrating. Its full of ups and downs plus a few setbacks thrown in once in a while too. As patients we can never get well quickly enough, at least we think it takes too long to be back on our feet. During recovery at the very least until you hit your 1 year mark post rads, keep taking in higher calories and water. Daily minimums during this phase should be at least 2500 calories and 48-64 oz of water.. every single day. Check with your doc to see if adding high protein whey powder (helps boost your healing) to shakes or smoothies will be ok. Almost all of us have had issues eating post rads. It can take a while to get back on track and for most of us, after rads we eat soooo slowly especially with sore throats and mouths. Centrum now makes a liquid adult multi-vitamin. Check with your doc if thats ok too and if so you can add it right in with fruit smoothies or thru your feeding tube. Its citrus flavored which could mix with fruit juice but you may not be able to handle the acidy fruit juice if you are newly out of rads. It probably took me at least a year and half/2 years before I could tolerate any fruit juice.

Hang in there, the worst is behind you smile

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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