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when one has the peg tube removed are there any precautions? as in no lifting, etc as the hole inside closes? I have read one can have problems with gutt leakage causing peritonitis if they develop this complication, so wondering what is suggested to avoid any such problems

thanks


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

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"Those who think by the inch and speak by the yard, should be kicked by the foot."


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When I had mine taken out I asked the doctor if I had any precautions after and he said no. I was worried because I had physical therapy the next day and I lift weights and all that. He said it would be no problem. And honestly, I took the bandage off the next morning after having it taken out and it was completely closed up. I was disappointed because I had plans to take pictures of the hole in my belly. I kept another bandage on it just to be safe but nothing leaked out after that. There was some initial leakage the first day, but that was it. If you are like me with a balloon on the inside it is pain free, at least I thought so, and I was prepared for the worst. It was definitely the easiest thing I've been through in a while! Now my only problem is that when I get hungry my peg tube scar hurts. My husband calls me Harry Potter. Good luck!!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Thanks, Steph! I appreciate your response.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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Not really Rita . . . except for a sting when it's pulled out and then euphoria to have it gone! Does take a week or so to heal completely but no lingering effects. Good for you!


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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It doesn't even sting if you have the crappy one like I had, too skinny to allow food to flow without pumping and prone to clogging -- Had no balloon on the end; when I gently pulled on it to see if I could get a better flow position, all 17" of it came out (I just couldn't help it!<g> -- Removed it four times total for cleaning, but had lots of difficulty reinstalling it the last time, so when it clogged again and I had been swallowing liquids for several weeks, I just removed it one more time.

I put a small piece of dressing and tape over it and it was closed in two days (I wish my trach stoma had closed that quickly!).


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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Pete! You are the worst patient ever!

Anyway, Rita, the PEG removal is one of the simplest parts of everything we have each been through and I say you should worry more about the economy and who is going to win the Presidential election.

God, I've become a CNN junkie. Oh, back to you Rita. My Doc just grabbed and yanked.

It was stingy at first, and the bandage had some "stuff" on it the next morning, but within 48 hours, it was totally sealed up and within a week it was starting to just scar over.

It's such a strange sensation. Getting it. Having it feed you. Then getting it yanked out. Now the scar is a strange morning reminder of the experience. (in the shower)

Enjoy the new freedom and don't find things to worry about :-) there are plenty that hit us without us worrying and they are usually the ones you weren't worried about anyway.


Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 16+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
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I had that same strange feeling when my Gastro-Doc yanked my first PEG -- When he pulled it out, the pain seemed to go with it and I felt like a part of me was leaving!

Speaking of bad patients, I was coming awake after minor abdominal surgery (navel hernia repair), a bit woozy, and saw the gizmo above with my blood pressure on it so I started holding my breath and tensing, then releasing, then doing it again, putting the sucker in alarm -- Nurse comes quickly over, watches me doing it and sez to the other nurse, "We have a joker over here", then goes back to her station.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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The nurse who removed mine warned me to grab and hold tight the sides of the table as she prepared to yank it out. It hurt like the devil for about 2 to 3 minutes but by 5 minutes I never knew it had been there for 3 months. I will advise not to drink any carbonated type drinks within at least 24 hours after removal. I wasn't told this and found out the hard way. I had profuse leakage after drinking a Sprite that freaked me out. We called the RO Dept. afterwards and it was almost like "you should have known not to do that".

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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Peg tubes, I want to scream,went in for a simple day surgery, it back fired they couldn't get it in thur mouth so had to wait 2 day for surgeon to put it in thur belly, he said he had to cut more then he wanted to, took weeks to heal and still causes problem. Hope to get it out the 10th. He put two stiches in to make sure I didn't pull it out. He said all he had to do was pull out the plug on red side to release the air. removes stichs and it would just slide out with no problems. I don't trust then, sure it's no pain to them.....LOL I'm in my 7th. week of chemo and radiation, today they added 2 more weeks. be Nove. 11 when it ends. so can;t be sure when peg will be out. I still eat all my food by mouth. The doctor said I was doing remarkable well for someone in there 7th. weeks treament. If I'm still eating on 10th I want the peg out, still driving too. Food is rough to get down because of taste, but no sores inside of mouth besides like a big canker sore on lip. I feel very bless to have things going this well. Not that I feel all that great, I just know where I could be and may get. best of luck to all of you.


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
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Keep it in until you KNOW you don't need it -- Be a shame to pull it and then need to get a new one -- I kept mine in place with a detachable neck lanyard so I didn't need dressings or tape to hold the tube -- Nurses tell me that it's quite common for the stitches to get infected, so pay particular attention to them with anti-infection goo.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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I had my peg tube removed after a year and all I felt was a prick like I had just received a flu shot. I was ot given any instructions of caution after the removal. The healing was fast as others have described, but I thought I was very careful not to lift anything heavy , yet I know have a hyrnia where the Peg tube was. I plan to have it taken of this winter. Has anyone else gotten a hyrnia and what have you done about it?

Hacklene


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had it removed yesterday. my experience was a strong pressure sensation and then a very strong sting sensation that lasted longer than I expected - about 3 minutes I would say. Once that stopped all was well but I thought it would just sting when being pulled thru but it wasn't too bad and very bearable. One of those things that make ya wanna go grrrrrrrrrrrrrrrr as you are experiencing it, but not even close to making you want to cry...

mine was not a balloon type but a disk about the size of a nickel at the end to be pulled through the hole.

was still bleeding last night when i changed the gauze, but not too bad so suspect all is well and should be healed up before I know it.

thanks for all the input so i knew what i was going to face ... the unknown is always so creepy ... i think that is the worst part about facing anything in life, esp health issues - the unknown. Thanks to Brian, and this forum, we do not have to face it blindly, we just have to ask those who have been there, done that.

You are all awesome and I hope you have an amazing week! Thanks again.



Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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I've had a ventral hernia repair, but it was prior to my PEG tubes (I now have a longer scar with two dimples in it from the PEGs).


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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Great job Rita!!!!!!!!

Congrats on being free of the tube smile



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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Awesome that you are tubeless Rita. Now onward and upward.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Rita:

Its been almost a week since they removed the tube. How do you feel? Any soreness or leaking?

I have my consult appointment in 2 weeks for the PEG and port to be removed. Ive had them almost 16 months and had removal scheduled twice before and cancelled it. Once was due to the recurrance, the other time I wasnt ready yet. I was able to get thru being sick off and on for the past month and still managed to avoid using the peg, so now I know Im ready.

I wont have to go thru what you did with yanking it out. I will be knocked out so that both the port and peg can be removed at the same time. Did you have a port?



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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Hi ya Christine smile

I did not have a port, just the peg.
At one week post removal I can report all is well.
It has pretty much all healed over, and is very tiny now compared to how big it was a week ago ... Still a dimple in the skin there, kinda like another belly button look, not sure if that goes away or not but it feels good and looks good for a healing scar... I am a happy camper smile I took it easy on lifting this past week, just to be sure all would be okay but did lift my 33 lb daughter yesterday and had no problems from it, nor pain so i think it was okay. It is so nice to not have the tube there ...

Best wishes on your removal! I am sure all will be great with it and trust me it is a very "freeing" feeling to have it gone though it is a GODSEND for what it is needed / used for.

Lemme know how it goes for u - I am sure it will all be fine!
and you are lucky you do not have to experience the ouch factor on having it yanked out LOL ... though it was bearable it was not pleasant! smile

Have a good one.



Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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I am scheduled to have my PEG removed this Thursday.

I have always had off and on problems with the PEG site getting irritated, bleeding and infection. Mine just never seemed to fully heal properly, so in many ways I will be glad to be rid of it.

Never-the-less, I can't imagine going through TX without it and I am concerned once it is gone about maintaining a good weight since my appetite is still so poor and most foods still taste rather strange, including chocolate ensure.



Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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Yeah Don!!!!!!! Congrats on the big news.

If you need any food ideas, let me know. I have tons of them since I dont eat very well either. Im really good at soup smile

Thanks for the info Rita. Im looking forward to being appliance free, its been a very long time Ive had these things.



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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Don- that's so exciting! Chocolate was one thing that tasted weird for a little while after treatment, but I've never been a big chocolate fan anyway. Now I drink the Vanilla Carnation Instant Breakfasts in the mornings - I can't bring myself to even look at an ensure or boost or whatever anymore.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Don, I would do the Carnation VHC, so you are getting 560 calories per tiny can instead of the 300 or so calories that Boost gives you. And then stay committed to documenting calories and fluids for a while till you are back on track to insure you are getting enough for a full recovery... don't want to lose weight or get dehydrated as those do not help with recovery. With committment you can do it, the PEG only helped get it in there, and hopefully your appetite will improve as your taste buds wake up a bit and begin liking what they taste. I wish you all the best with the transition. It is scary a bit when we rely on something but moving forward is always best if we can do it and I know you can - keep the faith.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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Stephanie,
I had a couple sample cans of the the Carnation Instant Breakfast Plus -(Vanilla/Vanilla Swirl). So today, I tried one and it isn't bad. I need to look into the VHC - the CCC doesn't seem to get any VHC samples.

A few weeks ago, I had tried a vanilla drink, but it was a no-go. A week or two can really make a big difference in taste.

I haven't been using my PEG much, (just nibbling and drinking ensure, juice and stuff), consequently I have not been keeping up the calories like I should.

Without an appetite is so easy to get busy and let the nutrition issue slip.

I had gained so much extra weight for TX, that I can't believe I have now lost all of it and about eight pounds more!

A couple weeks ago my ENT told me I should get back to going to the gym, and that should help my appetite. Instead it has just caused my PEG hole to bleed and now it hurts like hell!

Back to couch-potato for two more days, then this PEG is out!


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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Don,

Let your taste take a back seat to your nourishment. Get the VHC and just start pouring that stuff down. Six cans a day will get you plenty of nourishment. I drank the VHC for well over a year post Tx. I got to the point where I mixed in 8 ozs of whole milk and drank it with nearly every meal. It really helped because I didn't like eating during that phase of my recovery. Don't forget the water either.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Don-

Definitely keep up the nutrition and once you start eating more food by mouth (things other than VHC and stuff) you will start to notice a big increase in your energy and how you are feeling overall - at least I did. And then you will be hungry all the time. I drink an instant breakfast every morning (I won't touch boost or ensure with a 10 foot pole), sometimes I add a scoop of protein powder, but not always because my weight has finally decided to stop rapidly dropping (it was related to my dysautonomia). I drink milk at every meal for some extra calories and just try to get as much protein in as I can. I gained about seven pounds during treatment and now I'm about 10 pounds down from that (since the beginning of August), but I have plenty of energy and I'm eating like a horse, so my doctors are letting it go for now. Good luck with the PEG removal!!!!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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EGGNOG!! It's Eggnog Season!


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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Don,

I am so glad to hear your getting your !@#$% PEG tube removed! That is just great, great news. I haven't used mine for about 10 days now and will get it taken out on Nov. 20, provided my scans come back clean.

Like you, my taste buds are pretty dead so I'm finding that texture is more important than taste. Foods that are wet, like cucumbers with dip, are working well for me and once I really started eating, and thinking about food as energy and not fixating on what I've lost, the whole process got much easier. Today for lunch I had a chopped salad - very healthy, not unpleasant but basically no taste. Its a struggle to let go of the "pleasure" part of eating, but I figure it should be all uphill from here and I'm learning to be OK with that.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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EGGNOG!! It's Eggnog Season!

All I can say to that one is a matter of taste EWWWWWWWWW!! lol


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Eggnog season?!?!?! It's definitely GUMBO season!


Margaret - glad to see you are doing well! When are you going to get those scan results??


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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smile

Scans are on the 17th, follow-up with docs on the 20th.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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It's so easy to get "peg dependent". I did, it was easier to pour
nutrition into my peg and there was no hunger pangs, just full all the time. I could have eaten sooner, it just gets easier, hard to explain.
Its def a PULL when they pull it out and mine took way longer than
one day to heal. I can't look at blood and gore-so I didn't look but just touched or my husband helped me change bandage. But I
would not drink a soft drink of any kind afterward. Other than that
it was not hard atol except for thinking of the pain of the pull, which was over in a second-then a big smile!!!
Debbie


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
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I only hope that someday the PEG will be removed. Today I was able to swallow normal pudding (as opposed to thinned down pudding) at therapy. When I got home I made a Carnation and banana in the blender and drank all 8 oz and I just made a pudding for one and ate all of it. I have been trying creamed soups, but they taste salty to me. This is strange since the 20% of the tongue that I have is way in the back. Maybe I am tasting bitter. I still have a lot of trouble with residual and how to get rid of it. Sometimes a drink of milk will help, but mostly I end up having to "wash" my mouth.

Today I wondered how a custard filled donut with chocolate icing would fare in the blender. There are so many things that I want that do not seem like they would be good in semi-liquid form.

I am only 5 1/2 weeks post surgery so I feel that I should be happy with the progess that I am making. I am not the most patient person. I am very encouraged by the fact that others have returned to whole foods and are not dependent on the PEG anymore. It gives me hope.


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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Pete,

Just because stores have put out Christmas stuff and are playing Christmas music (yes I heard my first carol yesterday) doesn't mean it's Eggnog Season!!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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David,

Starbucks is already selling their Christmas, uh, I mean, Holiday (!), lattes...


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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When they start selling Eggnog in the stores (My local Safeway started a couple of weeks ago) then it IS Eggnog season! The containers have a snowman on them but we haven't seen any of that here except on the mountain peaks.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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LOL ... one of the radio stations here played Christmas Music all day on Halloween ... was so strange feelign hearing it so soon but kinda get into it after a while if you let yourself smile I LOVE Christmas! My favorite day of the year, eventhough I do not like winter weather in WA smile


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

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I heard Christmas music in Home Depot today. Unbelievable but I guess retail stores are desperate to pump up sales. It's always hard to get into the Christmas spirit here in Central Florida but trying to be sold on it the first week of November is down right ridiculous. What happened to Thanksgiving? Was it canceled this year?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Walmart has been playing Christmas music for quite some time now in their Christmas shop area. I asked the lady at the check out back there if she was sick of hearing it yet, and she said she blocked it out a long time ago. I try to wait until after Thanksgiving before even looking at Christmas stuff. That way I don't get tired of it before Christmas even gets here! And, it's hard to be in a Christmas-y mood when it's in the 80s outside!!!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Actually, I started my Christmas shopping today - on line. And I've been having a great time.

It's a new thing (vice?) I've picked up since OC and having been home-bound for so long post treatment, and so attached to this computer. I just love to shop on-line catalogue sites. Order one thing from just one of them and the catalogues start coming in the mail from lots more. I glance through them and before you know it I'm on their site putting things in wish lists and shopping carts. I get all my Christmas shopping done this way and never have to leave the house! I've always avoided crowded malls and Walmarts whenever possible anyway and it always took so long to find just the "right" gift. This isn't just easy, it's fun.

Lani


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
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Well it takes a long time to get in the christmas spirit when you live with GRINCH!!!! Not gonna steel it from me this year!!!!lol I am gonna have it my way....I am having christmas dinner at burger king


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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I just ignore my Grinch. He doesn't notice anyway. I'm already looking forward to decorating the outside of the house and yard. I do love Christmas!


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
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My PEG is now out.

Fortunately I passed weigh-in smile

I had an appointment with the same doctor who installed it and his intern.

As you might expect he made his intern pull it out and the intern told me it was OK to kick him if I need to.

The sharp pain lasted a lot more than a few seconds followed by moderate pain for about an hour and I still feel like a horse has kicked me in the chest.

Expecting only a few seconds of sharp pain, I drove myself -- bad idea!

So, how long before I can drink a Coke?





Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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Now that is some great news, Don!! Can't help you on the Coke question, don't drink the stuff myself, but I can offer my congratulations. And a little touch of envy! smile


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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Congrats Don! I've had a few sips of Dr. Pepper since finishing treatments and since my sweet taste buds came back, I can't handle the Dr. Pepper because it is waaay too sweet. It doesn't burn my throat as much now, but I just can't take the sugar, so I guess it's for the better. I tried a Dr. Pepper popsicle during treatment (I loved Dr. Pepper) and I remember it having no taste and it was gross. So, I wouldn't even think about trying a coke until you get more taste buds back!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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I was wondering about when it was safe to drink a coke (or "yum yum" Dr Pepper) because someone said not to drink soft drinks for a while after having the PEG removed. I think they said it foams up and out the PEG hole wound.

I have recently started drinking an occational soft drink and they do taste a bit like seltzer water, but tomorrow I want a Taco Bell Burrito Supreme comb meal (for some reason) and they come with a soft drink.

Also, just the last few days it seems that my appetite is back and I am feeling hungry and wanting to eat all kinds of things (my car has visted "Jack In The Box" for two day in a row).

Interesting that it took about a month for my energy to return, and about a second month for taste to(sort of)come back and now, as I start my third month of recovery my appetite seems to be returning.

Also, today my G.I. Doctors did say I looked great and cancer free. Let's hope so!


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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Don,

Doesn't Taco Bell have Ice Tea? And Jack in the Box?? Wow! I'm not a big meat eater (generally, I don't eat any) but the other day I was tempted by McDonald's and it did absolutely nothing for me. I was so disappointed!! So glad to hear your appetite has made a comeback.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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Sounds like a science experiment to me! I was told by the guy that took mine out that my stomach would close up in a few hours, so a coke may be safe, but I guess people heal at different rates. I went through a fast food period for probably a few weeks. I haven't had fast food since then! I opt for Subway or something like that over burgers now.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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For me my weakness is KFC chicken bowls...mashed potatoes, extra gravey, cheese, popcorn chicken softened by the gravey ....hmmmmmmm gotta go thanks folks...lol


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Well Stephanie, now I am hungry for a Subway sub!

Anyway why chest is still very sore.

Likewise the G.I. Doctor told me the hole should close in about a day.

His Intern put a huge bandage on my chest and taped me up from side to side. I have no idea why!

They said I could remove the (huge) bandage in a day and then just cover the PEG wound with a band-aid, but in addition to being sore, all that tape is embedded with chest hair frown

I don't have the courage yet to deal with it.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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1-2-3 Yank....like hot waxing legs OUCH!!!! This is one job that you wanna do quickly...get it over with...Good luck with the tape removal


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Great news that you are now rid of the PEG and with all the talk of food and drink it sounds like you are indeed hungry.
Don't worry about the embedded chest hair in the tape.
From someone who has been getting legs waxed for years.
Does not hurt at all now blush


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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taco bell is one of the few places that does not have iced tea frown unless you like the flavored ones (raspberry splash or something like that) i like plain iced tea with no flavor and no sugar and they do not have it, so i just have ice water there.



Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

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Yer lucky to be living in the PacNW, not the South -- Iced tea is very plentiful, but it is usually sugared. I usually just get water, but eating out with friends, I have found a glass of milk to be just right.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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I was a big skim milk drinker before Tx and I still drink it with every meal. My favorite post ride drink is skim milk blended with a large banana and liquid chocolate.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Im interested in knowing if any of you guys who recently finished radiation are able to drink a soda. I used to love Coke, but havent been able to drink one for about 1 1/2 yrs now. I stick to iced t, milkshakes, hot chocolate, and chocolate milk. Same for coffee, I can only drink coffee if it is mixed with hot chocolate.


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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Christine,

I've never been able to drink soda, so I can't answer you there, but the coffee....

My tastes and what my mouth, throat, and stomach can tolerate or will desire have been changing like the tides for 2 years now, and still do. I used to keep a running cup of black coffee with me always. After treatment I couldn't drink it at all. I started to drink it with flavored creamers & sugar at first, then I eventually got back to enjoying a cup of black coffee now & then, but not constant - not even daily. But then I still choose cream & sugar sometimes now, and sometimes the very thought of it makes me nauseous. My poor husband tries to figure all this out. It's kind of like "So do you like (insert something I used to love here) this week?

Lani


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
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Christine B. You will drink coke again. I had stage IV tonsil cancer and got the lifetime dose of radiation. For two years I was like you --chocolate milk shakes fortified with protein. But after a while I could drink coke and then certain fruits I used to love became possible. Don't worry. In times it comes back. Lee 27

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Christine,

I too at first was unable to drink a soda drink because the fizz was just not fun. I also didn't enjoy fruits, except bananas, for a long time post Tx but that did change over a long period of time and now I have no limitations whatsoever so don't give up yet.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I'm with you Christine, I used to enjoy a cold coke or fizzy drink but to date I am unable to drink them - 16 months after radiation.

As others have suggested I will also keep trying.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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Christine-

I can drink soda but I no longer like the taste. Because I haven't had it in so long , it is SUPER sweet to me. I also don't drink many juices now because they are very sweet and tangy tasting to me (fresh fruit tastes fine to me though). ! I pretty much stick with milk and water now!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Thanks guys smile

I have learned alot about never giving up from the great people on this forum. Sometimes the really little things most people take for granted become overly important to me, like having a soda. Coke isnt healthy anyway, just knowing I can drink it is what i would like to accomplish. I will add that to my list of things to keep trying every couple months. For now, I will stick to my iced tea, hot choc, shakes, and choc milk.


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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Christine,
Try opening the soda a few hours before you intend to drink it to let the fizz out and/or pour into a glass with ice and let it sit for a while. That way you get get the taste without the fizz. If you find you like it that way, buy liter bottles. They will go flat fairly rapidly after opening so you'll have flat soda available without having to remember to open hours before you want it. I was never a lover of fizz anyway unless it is in champage so this works for me. 11 years out and I still do it although I can tolerate the fizz if necessary.

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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If you can't or don't want to wait, pouring the soda in a glass and stirring it vigorously with a spoon does the trick.

My body just doesn't tolerate the bubbles, period - never has, but about once in every ten years or so a soda looks good to me, and this works.

Lani


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
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If you want to have fun with your bottle of soda and get rid of the fizz, drop a Mentos candy in it.

If you want to have a LOT of fun, but not have much flat soda left, drop several in quickly!!

http://antoine.frostburg.edu/chem/senese/101/consumer/faq/mentos.shtml


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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You guys are a hoot!

I about fell outta the chair at the idea of a dohnut in a blender, the same thing crossed my mind.

Finding such varied accounts of the cange of taste is suprising. Perhaps, just like getting "baby hair" we get "baby taste buds" as we recover.

"Vern food" really helped me keep my weight on, and is actually quite cheap:

1 can of Instant breakfast
1 bottle of ovaltine malt

I will fill a large glass 3/4 of the way up with the powder and then mix in whole milk. It takes a while to disolve.
The malt will really help put on or keep on the pounds, and I drink it with my one real meal a day.

After almost 2 years post TX, my taste is still pretty random, but I seem to notice that I get a set back if I dry out overnight. Hmm, perhaps those taste buds are injured or killed by drying out.

To me: Sugar is weak, salt is strong, starch EWWWWW.

As a note: Cravings for pork rinds came up during TX, my Oncologist said its very common, but he didn't know why.
Doing a full dietary study on myself I discovered that all the instant breafasts and supplements I had didn't have Selenium, if I recall correctly, and I never followed up.

Anyone else?


ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
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[quote=Pete D]If you want to have fun with your bottle of soda and get rid of the fizz, drop a Mentos candy in it.

If you want to have a LOT of fun, but not have much flat soda left, drop several in quickly!!

http://antoine.frostburg.edu/chem/senese/101/consumer/faq/mentos.shtml [/quote]Have you ever put a Peep in the microwave?? LOL


I drink coke once in a great while but I have to pour it and let it set for some time first. The carbonation burns my tongue. Heck, just about everything burns my tongue. I'm really working on being able to eat ketchup, though.


DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
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Now, almost 2 months later, Im still working up the nerve to try soda again. It looks so good, and from all my taste experiments Ive learned that lots of things look better than they taste. One day I will try soda again. I can do ketchup without a problem, even can eat tomato soup. Its so odd how we can all conquer different tastes.


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
Joined: Sep 2008
Posts: 489
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So glad that we are talking about tastes. I am trying some foods again post radiation. I learned one thing yesterday - even a really great piece of melt-in-your-mouth Dove chocolate may not be worth all that trouble. What a mess!!

I had tomato soup last Weds at therapy and it was fine. Tried to have some last night and it burnt my mouth. I can have a strawberry instant breakfast shake every morning, but the vanilla high calorie shake that I made this afternoon burnt my flap.

So on the menu this week is cream of wheat, cream of chicken soup, butterscotch pudding and more smoothies with whatever I can tolerate that day. It is very strange that something will look and smell great, but the taste is not so great or worse. What is really bothering me is the smell of things that I know I can't try yet.

I did find that the Special K protein water is good. At 99 lbs still I'm not on a diet to lose weight, but it did tied me over until I got home from the store. I will try Christine's high calorie shake next. My peanut butter is over a year old so I'm sure it is safe to eat.

If you try the donut Vern let me know how it is - I plan to also have blended pizza when I'm ready.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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Patty, I lived on cream of wheat for months. I think I had my PEG removed too soon. My tastes change still even with my being over 3 years out. One day one thing will be good but I try it later and it's not. I can eat tomato soup somewaht but not much ketchup yet. Any black pepper or similar will put me on the ceiling. If I accidently get something that burns, it ruins the rest of the meal for me because my tongue burns for so long afterwards. If it's something new, I'll have my husband taste it first. I can eat onions and garlic with no problem. Has anyone tried popcorn? To me, it's like trying to eat styrofoam peanuts with salt and lard. I did eat a Krispy Kreme donut once........with alot of water. I could sort of taste it.


DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
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