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Hi Folks!

Getting used to the new reality after free flap surgery (grafts healing, open trachea SLOWLY closing, GTube feedings, etc.). Life is not too bad. The only challenges I am having is that the GTube (PEG?) site is sore, I feel like I have to hold my stomach when I walk. Is this normal or something that I will have to live with for the next 3-4 months?

Update after surgery is that even though there is no metastases or nodal involvement, they want to do 4-6 weeks radiation and 'baby' chemo. I know this is insurance, but need to gather more information to solidify it in my own mind. Thinking about second opinion from City of Hope. Again, not disagreeing with their recommendation, I just want to know everything I can going into this. Thoughts?

The only other thing I am having a bit of a struggle with is smelling food and wanting to EAT. Not even on a liquid diet yet. My relatives are great cooks and while I am very thankful they are feeding my hubby, smelling it is torture. I have asked them to eat out and they are pretty good about it, and the formula feedings definitely help. Any word on how long until they let you start a liquid diet orally?

Thanks guys smile


11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
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I'm not sure why you can't eat or drink yet. I suppose as you say the wounds are slowly healing. To me it seems like a healthy sign that you want to eat. When do you see the doctors again to get a clear signal about swallowing etc?

I know the pain of seeing others eat with relish. I can taste things perfectly now but can eat only with difficulty. Soft foods go down a treat but I'd love a burger or even a piece of toast. However, MOST of the time one adjusts to the new normal and there are only flickers of envy. And in your case, you will probably eat again very soon.

Do you have trismus or limited mouth opening? If so, have you been given exercises for this? This can affect eating in the future.

Great to hear that you have no nodal involvement or metastases. If it is Stage 3, I guess the tumour was quite big. Whatever the reason for the rads and chemo, it's probably a very good one. Stamping out any microscopic cancer cells now will pay off in the future.

All the best!!!


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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HeatherB, you shouldn't have to bear with the soreness at the PEG site. The soreness is likely a bit of inflammation (is your tube leaking a bit?) or it could be granulation. Make sure you clean it three or four times a day; dab gently, do not rub, rubbing causes granulation. Do a saline soak for several minutes and put a barrier cream (like Proshield Plus) on the site, then cover it with a dressing. It should clear up the inflammation and the granulation. ChristineB also uses a burn cream for the area. The next time you see your doctor, do ask them to take a look at it.


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 think my microvascular doc isn't taking any chances and I am totally fine with that. Seeing him tomorrow and the major surgeon on Friday to get my questions answered on how the surgery went, what was discovered to change their minds to go for the rads & chemo, etc. I am relatively confident that they will let me eat before starting the next phases as they want me to gain weight and have a head start going into that process.

Probably the major reason he doesn't want me to eat is that the free flap is still pretty big (I have a tiny, almost pediatric mouth) and they don't want me to chomp on it.

Lots to learn - what a process! Thx for the vote of confidence smile


11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
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gmcraft - thanks for the suggestions. My home nurse is coming soon and I will run them past her as well. Its just gotten more and more sore - today is definitely the worst. Had to take some Tylenol. Hopefully we'll get this sorted straightaway.

Will let you know what works. I am beginning to have a sneaking feeling that it may not have been placed perfectly to begin with. Add that to 20+ pounds weight loss over the past three weeks (don't worry, there is plenty to spare) and I guess it changes the physical playing field a bit.

Thx a bunch!



11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
Joined: Nov 2014
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Get that soreness in your PEG site sorted out, it could be infected or something, your body is sending you a message. Call the doctor, you should not have to deal with that pain.

I hope you are feeling better soon. I hear you about wanting to eat.


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
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Nurse Practitioner has said I most likely have an infection at the port site. Still really sore, taking Tylenol for it until I see the Doc tomorrow morning. I knew it shouldn't be this sore, but its good to have her confirmation.


11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
Joined: Dec 2014
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My Kiwi Friend - I neglected to answer your question about Trismus. I think I do have it. Can't quite open my mouth all the way. I will speak with my Doc about that tomorrow.

My main concern with being able to eat is that I can nourish my body with real food (I was a believer in whole foods for years before this) so that I am more than ready for radiation and chemo. I have read what is in the formula I am taking - Isosource - can't find much to build on and the carbohydrates are very high. Blech. Just want to do the best I can for myself - even if I have to run it through the Vitamix & sip it smile


11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
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Patients with a feeding tube need to be careful when lifting or doing anything physical. Avoid lifting anything over about 15 pounds. More than that and it pulls on the feeding tube which will cause granulation (which hurts like heck!).

At the feeding tube site, ask the doc for some silver sulfadine cream or you can also use something like a dab of neosporin ointment around the site. Cover it with a couple drain sponges. You may want to secure the tube to have more comfort. There are all kinds of ways to do that. Some patients will wrap an ace bandage around their stomach. Ive even heard of patients using those pregnancy bands as well.

Your daily intake needs to be high enough to prevent weight loss. This can quickly spiral out of control. Going into treatment you need to keep every single pound you can. Every single day your minimums to hit should be at least 2500 calories and 48-64 oz of water. If you can take more in that will only help make treatments easier and help you to recover from surgery. Dont be afraid of gaining weight, your goal should be to maintain your original weight. By losing weight during treatments it means your body is fighting so much its burning up more calories than you are taking in. This really is one of the most important things to focus on. I cant stress it enough to monitor your intake and push yourself to make the daily goals. Ive seen far too many go thru treatments and suffer greatly due to not taking in enough calories and water. I was one of those patients myself and cursed myself for being so weak as I lay in the hospital feeling horrible. I hope you can avoid getting into that cycle.

Best wishes with your continued recovery.


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 - thank you so much for the information. The tube is still super sore. Seeing my surgeon tomorrow and this will be the first question on my list. I feel absolutely fine as long as I am laying down, but getting up, walking - feels like I am being stabbed. Definitely not the way I want to spend the next 3-6 months.

As far as weight goes, I was overweight before surgery and have lost over 20 lbs in the past three weeks. This is not weight I need by any stretch of the imagination. However, I am definitely keeping up with what they told me to put in my feeding tube. I am using Isosource 1.5 cal, but am concerned that the nutrition is mostly sugar and canola oil. I have come across an alternative, organic product called Liqiud Hope - have you heard of it?

Thanks so much for your suggestions smile


11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
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Hi - wink hope things are improving - usually within 10-14 days post surgery they have you eating. I would ask if you can try non chew foods, smoothies, milk shakes, pudding, ice cream etc... and if and when you do start to chew, it should be on the good side. Eating is fun but you need to be super careful of cleanliness after that. I would invest in a water pik and use it on the lowest setting, to get rid of any left over foods that can hide. Almost everyone who has had your surgery has a huge tongue afterwards. It's due to swelling and a build up of lymph fluids from the neck dissection. (the regular drainage pathways have been interrupted)
This should not deter you... just be super careful.

As for the rads and chemo... if they are offering get clarification - however, my advice is go with it if they have a good reason. Too often it is not offered and there are recurrences that can be deadly. Hugs and healing vibes to you.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Cheryl - I did get some more info on the chemo & rads, just still wondering about the about of rads (seems like a lot - more than 6 weeks).

Finally the Dental Oncologist let me eat - yay! Has me swishing every hour on the hour with baking soda/salt solution. Loosened some things up that were left over from the surgery. Doing well, eating things either liquified or in teeny tiny pieces. They derided the flap before hand and things are going much better. The right half of my tongue is a bit numb though, I think it may be permanent (that wasn't the area where the flap went) due to the wisdom tooth that was removed. Funny thing about the eating - it is exhausting, and I am still relying on the PEG for most of my nutrition. Believe me, when I chew anything it is definitely on the opposite side and I am super careful. Don't want another cheek bite to put me back in free flap surgery again.

Thanks so much for the info. This surgery isn't bad (I had very little pain) but it has taken me quite awhile to get the use of my body back. I had a bad go round with prednisone and didn't heal as expected. Left arm is still sore and recovering, PEG is still infected (staph) but hopefully that will be resolved within the next few days now that the buttons are off), still a bit tender in the area of the neck dissection.

Heather


11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
Joined: Oct 2006
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Hi Heather,
Great to hear your eating and swallowing some. Keep working that process, sounds like you're on the way to success! Concerning your thoughts about radiation and chemo, I just completed radiation and chemo (For the second time in four battles) after a radical neck dissection in December. It was explained to me the way you described it in another post (Rogue cells that might not be visible during surgery or outside the margins--Insurance for the future). Treatment went well when I reference this trip to what all I went through eight years ago, not to say it was a cake walk but I maintained my weight, and didn't even come close to the nausea I endured the last time! Of course the chemo was different and there were different side effects to deal with but I think I was just better prepared for what I was dealing with at every level. My doctors are very pleased as my oncologist was telling me all along that it would be risky and possibly brutal the second time around and most don't get through it, which is OK, we would just go until I said "Enough, stop," which I never did. Sorry to be so long winded but I want you to have a comfort level in knowing some medical teams/tumor boards think the three combined treatments are a successful treatment model and I am sure your medical team wants to make sure this disease is GONE for you once and for all (As is my prayer/wish for you). My first fight almost nine years ago saw me coming back several months later with a recurrence, and my wife and I sometimes think back the "What if" scenario of throwing everything at it the first time around, but my first surgeon just did not really believe in radiation and chemotherapy, and was pretty adamant about it (May have saved me the recurrence but the last two fights were in totally different areas so I still would be fighting right now). If a second opinion makes you feel better by all means get that feedback, but when you're in a fight you're fighting to win so nothing is off limits, right? Put together the facts and go where your heart and your head leads you! Praying and best wishes for you!

Last edited by Steve F.; 03-27-2015 02:36 AM.

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 ****

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Hi Heather,
I just came across your post and hope you are well and all of this is now behind you.
I recently had a mandiblectomy and have a new tongue far too big for my mouth. Can you share any hints on how to get through the radiation and peg tube process? I am also a non drinker , non smoker and am healthy other than oral cancer. Radiation scares me, so does the feeding tube. I've been through 5 surgeries, lived with a nose feeding tube for almost a month but not sure how I'll make it through this next phase of treatment. If you would share your story with me I'm sure it would help.
Thank you,
Susan


2010-surgery for stage 2 squamous cell carcinoma of right lateral tongue. Partial glosectomy with right neck dissection. Clear margins
2012-return of cancer to same area of tongue. Surgery with removal of 2 molars which irritated tongue. Clear margins again.
2013-return of cancer to tongue, floor of mouth and jaw where teeth were
extracted. Rad and chemo suggested - I declined.
2/2015-Mandible fibula, free flap surgery. My leg is truly in my mouth 😆
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Hi Steve,

Thanks so much for your insights...I have one chemo and two rads under my belt so far this week and the rad tech told me this morning that my problems with pain with the trays they use for the rads are only going to worsen in the coming weeks. He said that my mouth would probably begin to break down next week or the week after and I would start getting the sores related to the concentrated doses of radiation. Yippee. Gonna fight it with everything I can find as far as natural therapies (not the crazy stuff, I'm talking aloe juice and vitamins).

The second opinion confirmed the first so its 40 rads (maybe with a boost) and chemo light. I am hoping it doesn't go that long.

And thank you for your long-windedness. I appreciate every word - all of it helpful. Will keep you in my prayers as well for a full remission and "all clean" call smile

Heather


11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
Joined: Dec 2014
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Hi Susie,

I still feel like a newbie myself with this and you are certainly an old hand wight he years you have put it thus far with SCC! I have had my PEG since my second surgery in early February. It was painful to have placed, but luckily I was in the hospital and they had great drugs on hand. The heating pad they used was key in keeping the pain in check for me. It used heated water instead on electricity - amazing! I wanted to sneak it out with me when I left but it was connected to a machine that heated the water.

PEG for me has had some ups and downs, but I actually like it now. I had an infection that lasted about a month (staph) and once that was healed I am having no troubles at all. I gravity feed all of my liquid meals (which is about once a day as my doctors are most interested in me eating as many meals as possible through my mouth to keep my ability to swallow as long as possible). I have food allergies so the formula I am using is Isosource and to be truthful, I feel better on that than I do regular food. I am also using a product I found called Liquid Hope. It is vegetarian and from whole food sources - I am using that a s a supplement to the other. My PEG got blocked once, from using a drug to control acid reflux, and I had to go to the ER. They got it unplugged but it took about an hour of a nurse working on it and they eventually had to use a specific drug to do the trick.

As for radiation, I am a total NOOB (newbie). Only 2 in so far. I don't like them, the mask makes me claustrophobic, and I have to take meds for it. The rad tech says the lining f my mouth will start to break down next week or the week after and it will get really painful with the dental trays. I am looking for every way I can to mitigate those symptoms from a holistic perspective (aloe juice, rinsing with baking soda and salt, supplements - anything is worth trying as long as it doesn't involve voodoo or questionable substances).

As far as your oversized new tongue is concerned, my plastic surgeon (the Fabulous Free Flap Guy) said that radiation would shrink my flap down considerably. The bad thing is that I ended up biting my excess to something that had to eventually be cut out. I did it while I was in the hospital, under sedation, dreaming about beef terriyaki. I wish they had put something inside my mouth to prevent this, because now I probably have less flap than I need to complete the process without complications. Its very sore where they sutured it.

38 more rads to go, and up to 4 more chemos. So far so good.

Best of luck and happy to answer any additional questions that pop up!

Heather



11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
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