Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#193797 01-26-2017 06:17 PM
Joined: Jan 2017
Posts: 4
Lbpbbp Offline OP
Member
OP Offline
Member

Joined: Jan 2017
Posts: 4
Hi, Everyone! After a few months of improvement to the point he could eat real food and think about traveling again, my husband has developed painful ulcers on his tongue that are not responding to prednisone or topical treatments. Lidocaine and pain meds give him temporary relief. But he is so discouraged and depressed at having to go back to eating liquids and mush again. We both need encouragement and tips from anyone and everyone who has something to share that might make life easier for him. We have plans to go to LA in a couple of weeks for an event with one of our grandchildren, but that is looking doubtful.


Spouse of 56 years has had radiation therapy (2004) and surgery and proton therapy (2016) for oral SCC in his tongue. No active tumors presently, but radiation mucositis is causing him severe pain. Affecting eating, talking, quality of life. Dealing with depression. Look for support and tips from those who have been there.
Lbpbbp #193798 01-26-2017 08:06 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF! Im very sorry to hear about your husbands eating difficulties.

When was your husbands last treatment? In your signature it only says 2016. To me, this means he is still in the recovery phase where unfortunately there will be some ups and downs and set backs. I suggest asking his doc for a prescription for magic mouthwash. This will numb his mouth temporarily so he is able to eat. He should also be on pain meds to help with the pain. I remember the mouth sores hurt so much!!! I feel so bad for anyone who is going thru this.

As far as depression, it is very common among OC patients and even their caregivers too. At his treatment facility there should be a therapist or someone to talk to about his depression. Ive always thought everyone needs a reason to get up in the morning. Maybe if your husband had something fulfilling to keep his interest it would help him to feel more useful.

Heres a list of easier to eat foods. This list works for those who are relearning to eat. The foods mostly have a smoother texture and less salt and spices which should make them easier to eat.

As a caregiver, you have your hands full. Dont forget to take some time for yourself too.

Best wishes to you both!


List of Easy to Eat Foods




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
Lbpbbp #193799 01-26-2017 09:41 PM
Joined: Jan 2017
Posts: 4
Lbpbbp Offline OP
Member
OP Offline
Member

Joined: Jan 2017
Posts: 4
Many thanks, Christine. His last treatment was August 1, 2016. After an initial difficult period, he improved to the point that he could eat most table food and had regained part of the weight he had lost. He was looking forward to some family events and next summer in the mountains, and then a complete reversal. About 3 weeks ago he developed one, then a second ulcer on his tongue and he is back on total liquids because of the pain. The slide has been dramatic. We use many of the foods on your list; I think I could write a book on creating calorie-dense soups! But surprisingly, some things one would think would be fine he cannot tolerate, like baked potato. It changes sometimes daily. He has all the topical Rx pain relievers, plus opioids. He tries not to take the opioids, because he wants to be able to drive and not give up that independence. I know he cannot completely cure the radiation mucositis, but I am hoping I can learn some new tricks to help him relieve the symptoms and maintain his quality of life.


Spouse of 56 years has had radiation therapy (2004) and surgery and proton therapy (2016) for oral SCC in his tongue. No active tumors presently, but radiation mucositis is causing him severe pain. Affecting eating, talking, quality of life. Dealing with depression. Look for support and tips from those who have been there.
Lbpbbp #193801 01-27-2017 07:09 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
If your husbands mouth sores are from the radiation, the sores should not be there permanently. It just takes time to heal. For most patients, they can never recover as fast as they think they should. A major contributing factor in all of this is his intake. After what your husband has been thru it can take a full 2 years for his body to bounce back. Every single day he should be taking in 2500 calories and 48-64 oz of water. I also suggest having a long chat with his physician, specifically asking about radiation mucositis.

Heres another link that may be helpful....

Main OCF site -- Complications of Treatment


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
Lbpbbp #193802 01-27-2017 09:06 AM
Joined: Feb 2007
Posts: 176
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Feb 2007
Posts: 176
My Radiation Oncologist had me taking 150mg of zinc daily for the purpose of restoring my taste buds. It took 12+ months but I have full function of my taste back.
All the best,
Rob


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
Lbpbbp #193803 01-27-2017 10:47 AM
Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 111
Lbpbbp -

Try to get your husband to the ENT as soon as feasible. If he completed radiation last August, he should not, just now, be exhibiting ulcers.

If the ulcers are not responding to the topical treatments or prednisone, then the cause may be driven by something other than surface irritation

Even if its just for peace of mind, rule out recurrence.

Are they growing or bleeding? For me, each cancer diagnosis was preceded with painful ulcers that did not respond to topical treatments or medication.

Please follow up with your ENT.....



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Lbpbbp #193805 01-27-2017 05:02 PM
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
I agree with the above posters. It seems strange to still have mouth ulcers after so many months post RADs. But I know full well how awful they can be, and lidocaine is only a temporary palliative.

If he doesn't like taking the opiods I'd recommend kratom. It's a natural remedy from the leaves of trees that grow in Indonesia and readily available from many responsible online vendors. It's a proven pain reliever and general anti-anxiety aide that I use with great success. Please PM me for more info if you'd like. And my best to both of you.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Lbpbbp #193806 01-27-2017 08:40 PM
Joined: Jan 2017
Posts: 4
Lbpbbp Offline OP
Member
OP Offline
Member

Joined: Jan 2017
Posts: 4
Thanks for the suggestion of the kratom. I will do some research to make sure it is compatible with all the other stuff he is using/taking.

Has anyone else used that with good success in addition to David 2?


Spouse of 56 years has had radiation therapy (2004) and surgery and proton therapy (2016) for oral SCC in his tongue. No active tumors presently, but radiation mucositis is causing him severe pain. Affecting eating, talking, quality of life. Dealing with depression. Look for support and tips from those who have been there.
Lbpbbp #193808 01-28-2017 06:54 AM
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
I would agree with David2 and bjmpittsburgh that it warrants a visit to the doctor's. it's been five months and it really is a bit late for him to start developing ulcers from the radiation.


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.
Lbpbbp #193809 01-28-2017 11:08 AM
Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
I agree the tolerated foods change daily or even hourly. I do well with soups but get nowhere with potatoes. I do use lots and lots of butter, gravy and syrup to get things to the back of my mouth and down. Always have a glass of liquid close by too.

The taste buds change from day to day too as I am sure you already know. I almost go through the floor if I use a Kleenex to wipe my tongue. It feels like I am ripping several layers off my tongue. I guess the new taste buds are extremely fragile.

I also have good and bad days with swallowing. One day I can get away with even chewing on a French fry the next day liquids are a struggle.

Please also try the baking soda, salt gargle, or just salt gargle for a little relief.

By all means keep up the calories with liquids and get that water in each day to heal and not create new problems.

Wishing you the best, please keep us informed.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Lbpbbp #193812 01-28-2017 01:32 PM
Joined: Jan 2006
Posts: 756
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jan 2006
Posts: 756
Likes: 1
Lbpbbp,

I had problems with ulcers and healing similar to your husband. My tongue was swollen for months, and I would get ulcers on tongue and all areas in my mouth that was exposed to radiation. I required pain medication to be able to eat and was on a liquid diet for a long time. Certain foods would guarantee an ulcer. I was on prednisone and all kinds of topical medication for a long time. My RO said I had the worst reaction to RT he ever saw.

He referred me to the head of infectious diseases at the hospital for further testing to see if there was another cause of my healing difficulty (didn't find any). He recommended hyperbaric oxygen therapy (HBOT) which helps with non-healing wounds, but first he put me on a different medication therapy - trental (pentoxifylline) + vitamin E. I finished RT in April 2006, was on the trental therapy from 10/2006 to 6/2008. It helped, but didn't fix my issues. I then went for 45 HBOT "dives" in 2008 - finally got some relief.

My mouth is still very sensitive, I did develop ulcers from time to time, but not in the past few years. I hope this info helps. Wishing you and your husband the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5