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Talim75 Offline OP
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Everything was going great after my initial surgery in August 2014, but then in April I started experiencing sharp pains in my ears at random intervals (this was one of my symptoms from the first bout with cancer). I went in for a check-up, but there were no obvious signs of cancer. About a week later I noticed an inflammed lymph node in my neck on the opposite side from where my tongue cancer had been. After a CT scan, fine needle biopsy, and PET/CT scan it was determined to likely be cancerous. I had another neck dissection on the opposite side as previously done, they removed 29 lymph nodes including the cancerous one. It was the only one that was cancerous, but there was evidence that it was starting to spread. Doctor said he would put me at about a Stage III this time.

Got my PEG tube placed 2 weeks ago. Some complications with it. I had some hematoma and now have a lot of pain around it. It continues to weep/seep so the skin around it was getting quite irritated. Just bought some moisture barrier lotion to help with that. My doctor said it didn't look infected, but he put me on some antibiotics for the next two weeks anyway. I've tried slogging through all of the questions on the forum, but didn't find anything on issues with the PEG tube and pain. Any suggestions are appreciated as it continues to feel like someone is jabbing a knife into my side. Most disappointed since was hoping to be able to be more active before my treatments wear on me. And am worried since wounds tend to heal less during treatments.

Monday I will start my chemotherapy and radiation treatments. Going to do three big doses of Cisplatin, one ever 21 days. And about 7 weeks of radiation to the mouth and neck.

I know everyone reacts differently, but my biggest question is how active were all of you able to stay towards the end and right after your treatments? I am supposed to be adjunct teaching this Fall semester (which starts during the last 2 weeks of my treatments) and I'm concerned that talking and fatigue may become an issue. Luckily, my classes are lab classes so I would only need to talk for less than 30 minutes each class, 3 classes total all on the same day. Were most of you able to continue to work and talk with others? How was your stamina and energy levels at the end and few weeks after treatments? Another concern of mine is that the University I teach at is located 2.5 hours from home - so that is 5 hours of driving, and 6 hours of teaching. It is only one day a week, but please be honest if you think I am being too ambitious.


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

Joined: Oct 2012
Posts: 1,275
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Talim75, the driving and the teaching all on one day may be difficult towards the latter part of treatment. Radiation will make you fatigued and Cisplatin too. You might need to make alternate arrangements.

Do you do a saline soak at the feeding tube site before you put barrier cream? Soak some gauze with saline and put it on the site for ten or fifteen minutes, then put barrier cream and a clean dressing on. You should be doing this several times a day. We found the saline helped with healing and quite quickly too. Doing saline soaks several times a day for as long as you have the feeding tube is a good way to ensure that the insertion site does not get infected and keeps it clean. Dab gently when you are cleaning it, don't rub as rubbing causes granulation and granulation can be very painful and will bleed.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jul 2014
Posts: 42
Talim75 Offline OP
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Thanks you so much for the PEG tips. I was told not to put a dressing on as my doctor said it was best to let it breathe. My cleaning routine is to take a warm shower and let soap and water rinse over it, then afterwards I gently blot it with wet gauze or q-tip, as that is what they suggested. The skin irritation is on the bottom of the site where it stays moist the most. The pain seems to be from a hard lump of hematoma under the skin on the upper portion of the insertion site. The doctor keeps trying to break it up (I'm guessing that is his strategy all I know is that whatever he does is quite painful), but it is still there and painful from any movements.

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Best advice I can give you on how to keep your stamina up during rads is thru your intake. Every single day push to take in at least 2500 calories and 48-64 oz of water. This is the minimum! If you can take in 3000 or more calories daily you will have a much better chance of being one of the lucky ones who sail right thru treatments. If you will be having chemo, you want to push the water on those days and the first day or 2 afterwards. Water is even more important if you have the 3 big doses instead of the smaller weekly doses, which are usually easier to tolerate.

As far as driving or working goes this is a very individualized question. If you are like most of us and taking strong pain killers (or the medical cannabis you discussed on your other post) then driving (especially long distances) probably wouldnt be the best plan. The American Cancer Society has volunteer drivers who can help take you back and forth to treatments or doctor appointments. Im not sure of their availability so its best to get set up with this as soon as you can if you anticipate needing help driving to rads.

The pain at the peg site could be scar tissue or granulation. This can be very painful! As a long time feeding tube user myself, I can imagine how much it hurts you to have the doctor pushing on the lump. Care must be taken to pushing around that site to avoid having the feeding tube being dislodged which would then cause bigger issues and need to be replaced. If you dont see an improvement after following doctors advice to leave it uncovered try to cover it up and see if that helps the skin irritation. A 4x4 drain sponge to cover the site would keep it dry and absorb any leakage. Its fairly common for feeding tube users to have a slight leak around the site.

Good luck!!!


PS... Please review the link Ive PM'd again and add your signature. Look next to your My Stuff tab, click on the tiny flashing envelope to get your PMs. By adding a signature, it will GREATLY help us to help you with pertinent advice. Thank you very much 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
Joined: Jul 2014
Posts: 42
Talim75 Offline OP
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Thanks for the suggestions. I am doing my best to keep my fluids and calories up. It was a bit tougher this week as I ended up finding another possible outbreak of cancer that I had to spend half the day at the hospital getting checked up for yesterday. I am definitely feeling the toll from it today and working on ramping everything up. I got pretty wiped out, but am starting to feel a lot better now that I've been able to up my intake.

I've had two radiation treatments so far and am already experiencing a good sunburn. I also have a metallic taste that started on day one. I've found sugar-free candy to help a good bit when the taste starts to make me feel nausiated. The anti-nausea medicines seem to be working well.

I am not currently on any pain medications and no longer live anywhere where medical cannabis is legal so those will not be an added issue for me. I will likely break the day up a bit by planning on staying there overnight the night before I am set to teach, that will allow me to get up later and have a shorter more normal work day the next day. But I will see how I continue to feel.

As for the G-tube, whatever the doctor did last Friday that made it hurt so terribly ended up making me feel so much better by Sunday. I am finally able to stand upright and using the moisture-barrier ointment has cleared up any surrounding irritation as well.

Sorry about the signature - I placed it on my original post and didn't think I needed to on any additional replies within the same thread. I'll just leave it posted all the time from now on.


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

Joined: Sep 2014
Posts: 87
Likes: 2
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I did not have chemo at all, but did have radiation five days per week for five weeks. There was a somewhat noticable lethargic feeling, but I was still quite active during and after treatments. The surgery slowed me down more than the radiation.

In fact, right after my second to last treatment, I drove to the trailhead and climbed the "Grouse Grind", a rather strenuous local hike that is about 2.9 km long (1.8 miles), has an elevation gain of 853 m (2800'), and is a combination of regular old forest trail (dirt or mud, with tree roots) plus 2,830 manicured steps along the way made out of piled up stone or wood.

I suppose how you react will (partially, not wholly) depend on how physically active and otherwise healthy you were before this happened. In my case, I am on a competitive dragonboat team that in addition to regular practices, also requires us to go to "boot camp" in a gym and supplement our training with some additional outrigger canoeing, so my fitness level prior to treatment was relatively high. I was also lucky enough not to have to require chemo, so I have no idea how well I would have tolerated that - it may well have been a much different story for me if I had to be injected with all that nasty (but potentially life-saving) poison.

So I count myself lucky and got the better end of it. We do have members here who did not fare as well. That being said, I felt healthy before diagnosis and now I always have it in the back of my mind, wondering if it will come back or had spread elsewhere without being detected. There is not much I can do about that, so I try not to let it worry me.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Joined: Jul 2014
Posts: 42
Talim75 Offline OP
Contributing Member (25+ posts)
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Posts: 42
Thanks for the words of encouragement. I was pretty physical prior to the cancer (both in career and gym), but for a little over a year my activity levels have gone up and down depending on if the cancer was active or not. And since April I noticed a slow down in my activity levels and then the pain in my ear made me start actively looking for evidence of a return of cancer - thank goodness as I was able to once again catch it fast.

I am feeling tired this week after the chemo, but I'm already feeling better now so I think that the chemo may slow me down more than the radiation. I think it was accentuated by the fact that I unexpectedly had to spend most of the day after chemo at the hospital getting additional tests because I noticed a lump in my left breast so I didn't get to keep on top of my fluids and nutrition as much as I had planned. Only time will tell, but I am going to try my best to keep my activity levels up.

Right before this recent round of cancer I started up with a local dragon boat team. I really enjoyed it and am definitely looking forward to joining them once again after my treatments are finished up smile.


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

Joined: Sep 2014
Posts: 87
Likes: 2
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 87
Likes: 2
Well, hopefully that lump is nothing of concern. So not fair to get it yet again. Good luck with the chemo/radiation combo, too. I hope it doesn't beat you down too heavily.

I guess all you can do is to try to eat as well as you can while you are able to, then try to keep your calories up with smoothies & other supplemental options, as the burns start to make it more difficult to eat. And while you have the energy, stay as active as you can when time permits, even if it's just some bodyweight exercises & stretching at home.

Adding those visits for chemo treatments probably cuts even more into your schedule, leaving less time for all the other things - hopefully you have support folks to help you with all the regular day to day stuff like laundry, grocery shopping & cleaning that also take time & energy.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards

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