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Mom undergoing radiation #198470
06-07-2019 11:21 PM
06-07-2019 11:21 PM
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Chandana Offline OP
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Chandana  Offline OP
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Joined: Jun 2019
Posts: 3
Hi ,

My mom was diagnosed with squamous cell carcinoma of the tongue and underwent a surgery.
Now she is undergoing radiation therapy and is at the end of week 3.

She has severe mouth ulcers and nausea. The pain is getting bad and she is on liquid diet. Her doctor has given her steroid medication for the pain and has helped only a little .

I am seeking advice from this group to help her in anyway to get through this tough phase.She is 67 years old . It would be really helpful if she can hear some stories that are similar and how they were able to cope up with pain during and after the radiation treatment.
She still has 3 more weeks to go and is very worried how the next weeks would turn out .

How long would it take after the radiation ends for the mouth ulcers to heal ?

Please reply ...

-Chandana


Chandana
Re: Mom undergoing radiation [Re: Chandana] #198471
06-08-2019 03:19 AM
06-08-2019 03:19 AM
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Posts: 10,303
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

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Joined: Jun 2007
Posts: 10,303
PA
Welcome to OCF, Chandana! Im very sorry to read about your mother!!! Shes lucky to have you!!! Around 3 weeks is when most oral cancer (OC) patients begin to feel lousy and the side effects start showing up.

Any changes of issues she needs to speak up and tell her doctor and nurses. This is especially true with the pain that many going thru rads will have. A fentanyl patch is a very good way to help most patients deal with their pain. Its easier to take than other pain meds as its a small patch that she would place in a different spot every 3 days (72 hours). Its very important if using the patch your mother reads and follows ALL directions!!! Never cut, bend, fold, rip, tear, puncture, or disrupt the patch in any way as it can cause the patch to give out too much of the medicine at once. No long hot showers or baths either while shes on it. Other than that its so much better at controlling pain but she still cold have occasional pain called "breakthru pain". For that she should be given another pain medication to take when she has bad pays with the pain. Most pain meds can be given in the liquid form too so this helps patients who are having mouth/swallowing issues. Ask the doc for zofran for nausea and have your mother take it around the clock for the nausea. Thats next to impossible to get ahead of once it begins. If necessary when a patient isnt able to keep anything, even the anti-nausea meds down, they probably would benefit from a suppository anti-nausea dose until the nausea is better controlled to go back to regular medications.

Your mom can also ask for a prescription to get magic mouthwash. Thats a rinse she would swish around in her mouth for about a minute before spitting it out, do NOT swallow it!!! This can be made of different combos. Mine was lidocain, maalox and benedryl. This will numb her mouth long enough (about 20 minutes to forty)so she can try to eat or brush her teeth. She should be rinsing her mouth at least 4x a day with a tsp baking soda, 1 tsp salt and a cup of warm water. This is the same rinse for about a minute and spit it out. The baking soda concotion helps the ph balance in her mouth and the salt helps with healing.

Intake is a HUGE problem for patients who are beginning to have alot of painful mouth sores. Its VERY important your mother take in at the very least 2500 calories and 48-64 oz of water every single day until she hits her first year anniversary of finishing rads. If you can encourage her to do more that will only help her to get thru it easier. What shes going thru burns an incredible amount of calories which show she is NOT getting the nutrients her body needs. This will so easily become a vicious cycle of playing "catch up" but the catch up never happens. One day only taking in 1000 calories thinking the next day they will take in extra to cover it... that tomorrow where they catch up never happens and before they realize it, they're 10 pounds lighter and feeling so much worse than they had the week before. The weight loss is a sure sign she isnt taking in enough every single day. The daily intake is the single most important thing to focus on and when nauseous its next to impossible to do the minimums, let alone keep enough fluids down. Make certain the doc and nurses know every single thing you have written and you can ask them about anything Ive written here if you'd like to.

If your mother is losing weight thats NOT good!!! Even obese patients are told not to lose weight. Losing weight when going thru rads can be very quick!!! I was amazed at losing 20 pounds in a week and didnt mind as I thought I had it to lose. The kind people here warned me about this I was too tired to pay much attention to anything besides sleeping.

Patients who struggle with their intake can get a feeding tube to help them to do better with their daily intake. A nasal tube is a fast, temporary solution that can be done right in the doctors office. Its not fun but it is necessary if a patient isnt able to do their daily intake. Its also very important for the patient to take sips of water many times a day to keep those swallowing muscles active. Believe it or not those muscles can and will very quickly forget how to finction and down the road relearning how to swallow is NOT an easy accomplishment. Your mother can also get extra hydration in the chemo lab a few times a week which will help her feel so much better very quickly. The doc needs to write an open prescription for fluids. Its amazing how much she will feel better when getting this done.

The water intake is soooo very important especially if doing chemo. If at all possible taking in extra fluids the day before, the day of and day after chemo. The extra water is needed to flush the poison out of her system to avoid kidney damage. If shes getting chemo and noticed any change in her hearing that must be reported immediately!!! Cisplatin is a very common chemo for this type of cancer and can cause permanent hearing loss.

Unfortunately rads is cumulative. It gets progressively more difficult as patients continue thru the treatments. Even after completing rads, it still continues working making patients feel pretty lousy for the first couple weeks after finishing. Most patients who finished rads find the recovery phase is NOT anything like what they expected. Its full of ups and downs with some setbacks and not one of us can ev er get well as quickly as we think. As far as how long the mouth sores hang around after rads ends, that will vary greatly for all patients. Ive seen anywhere from 3 weeks to 3 months after rads before patients notice their mouth actually feels better.

Theres a million and one more things I could tell you about this but I dont want to scare you or your mother. Rads is VERY hard for most of us but it definitely is doable!!! Patients can get depressed while going thru rads. Feeling so bad every single day can wreck havoc on a persons outlook and moods. Caregivers have a very difficult job to do and staying positive when they watch their loved one suffer is not easy at all, but it is very important to the patient. Many patients and caregivers as well will need anxiety meds for everything they are going thru. Its just another tool to get everyone thru some very difficult days.

Hang in there and dont worry... you now have us to help you and your mom. Best wishes!!!


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
Re: Mom undergoing radiation [Re: ChristineB] #198502
06-11-2019 10:41 PM
06-11-2019 10:41 PM
Joined: Jun 2019
Posts: 3
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Chandana Offline OP
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Chandana  Offline OP
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Joined: Jun 2019
Posts: 3
Thank you so so much Christine ! You are an angel to us ..
Talked to my mom about all this and she is getting some help from her doctor now ..
She has speech difficulties now because of mouth sores and ulcers ..Her doctor prescribed her some steroid medication for pain and it is helping a bit ..

She still has 2 and a half weeks to go ..She is planning to talk to her doctor if she is not able withstand the side effects to take a break from Rads ..
Really tough to see her go through this ..Support really helps ..

Thanks once again for sharing your story and all the tips and info ...


Chandana
Re: Mom undergoing radiation [Re: ChristineB] #198503
06-11-2019 11:10 PM
06-11-2019 11:10 PM
Joined: Jun 2019
Posts: 3
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Chandana Offline OP
Member
Chandana  Offline OP
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Joined: Jun 2019
Posts: 3
I also found this mouth wash on Amazon that has very good reviews .
The name is Prevention oncology mouth rinse .

Please let me know if anyone in this group has used and it’s helpful .


Chandana
Re: Mom undergoing radiation [Re: ChristineB] #198504
06-12-2019 12:11 PM
06-12-2019 12:11 PM
Joined: Apr 2019
Posts: 9
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DavidDH Offline
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DavidDH  Offline
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Joined: Apr 2019
Posts: 9
Dear Chandana and ChristineB,

Chandana, please follow the advice of ChristineB. I might suggest one other mouthwash that had some effect for me: turmeric - one teaspoon of turmeric and 1-2 cups of water. After swishing it around, your mother can swallow it, though it shouldn't happen more than a few times a day (reduces inflammation, allowing for intake, and some studies show that its ingredient curcumin can fight cancers). My doctor is Indian American and apparently turmeric is frequently used in India; plus, there is a lot of research and new grant monies for further testing.

And, yes, cisplatin can cause hearing loss. I had to buy hearing aids this week - and they are not cheap and are probably never covered by insurance! My oncologist believes that cisplatin was the right and most effective chemo med for me with the best chance of success. I won't know for a few months if my throat cancer is eradicated; if so, I'll be okay with everything, but if not, it will be a very bad day.

I still have my PEG feeding tube but am now eating solid foods at least twice a day and am about ready to get off of it. BUT, without the tube I would have lost at least 50 pounds - and I really don't have it to lose. I had a formula that kept my weight nearly the same for seven weeks of treatment. Please look into a tube immediately. Not pleasant getting it in but it makes a world of difference.

Take care! DavidDH


HPV base of tongue. Some in lymph nodes. Diagnosed 2/27/19. Seven-week treatment (3 chemo, 35 radiation) began April 1, concluded May 17.
Re: Mom undergoing radiation [Re: Chandana] #198507
06-12-2019 10:06 PM
06-12-2019 10:06 PM
Joined: Jun 2007
Posts: 10,303
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,303
PA
Rads are NOT easy for anyone! Even those lucky few who sail right thru rads with barely any noticeable side effects have their own struggles. Unfortunately, rads is progressive. The further you go, the harder it gets. I too suffered thru rads thinking I could avoid doing some of the treatments.... NOPE!!! Towards the end, I was in such bad shape I lost my voice, could barely walk or even stand up without help. My doc took one look at me, never even looked in my mouth or checked my chart... sitting in a wheelchair barely able to lift my head or follow a conversation, I was admitted for malnutrition and dehydration. Guess what? Even being hospitalized didnt stop those rads from continuing... the techs came to get me anyway. I also thought I would just quit then but that wasnt allowed either. My nurse and son ganged up on me and said it wasnt happening that they wouldnt let me quit as they would not sit back and watch me die because I was having a hard time with rads. Somehow I finished all of my scheduled treatments, but only 2 of the chemo doses from being so badly affected by it. Ive been where your mom is and understand it all too well. I wouldnt wish OC or the horrendous barbaric treatments on my worst enemy. But!!! Even though it was some of the hardest days Ive ever been thru, I am alive today and living a different but very good life thanks to so many people helping to keep me on the right track.

As your moms caregiver, watching her going thru this and in pain must be so disheartening and upsetting to you. The following will help to turn this around and make her more comfortable... Bottom line on how to get her thru rads in the easiest way possible... focus on what is controllable! The better she does with her intake, the easier everything will be for her. Every single day she needs to take in at least 2500 calories and 48-64 oz of water... every day!!!! With mouth sores and struggling to swallow this is NOT easy to do. The magic mouthwash will help her alot!!! It will numb her mouth so the sores arent bothering her as much enabling her to eat. Her pain must get managed as quickly as possible to help her feel slightly better. I would definitely advise getting the prescription to get extra hydration too, then get her in there asap. Not taking in at least 48 oz daily will quickly sneak up on her. Dehydration makes patients feel absolutely horrible!!! The extra hydration will instantly boost her up after taking in a couple bags, she will walk out of there feeling so much better than when she first walked in.

Try to give her something to look forward to. Even minor things can mean alot to a patient who is struggling. In all of this dont forget to take good care of yourself as well. Being a caregiver is NOT easy!!! Try taking some time away just for you so you can catch your breath. Do something you enjoy like getting a manicure, going out to lunch with friends or something that will give you some much needed time to relax and unwind. If you have people who have offered their assistance maybe get someone to take your mom for treatments for a couple days a week. Im sure she would enjoy seeing a friend or other relative who she likes spending time with.

Hang in there!!! We're here to help you both.


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
Re: Mom undergoing radiation [Re: Chandana] #198510
06-13-2019 10:22 AM
06-13-2019 10:22 AM
Joined: Jun 2019
Posts: 5
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Hazel Offline
"OCF across the pond"
Hazel  Offline
"OCF across the pond"
Member
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Joined: Jun 2019
Posts: 5
Hi Chandana
I am 62 and 10 month post radiotherapy for tonsil cancer. I too had ulcers and a radiation burn the full length of my tongue. I was prescribed gelclair which did alleviate some of the pain.i am in the UK so my treatment May have been slightly different. Once treatment finishes just remember the hard work really does start as we all recover at different rates. I found it was bettervto have an idea of what was going to be in front of me as opposed to blindly not knowing.

Hope this helps
Regards

Hazel

Last edited by gmcraft; 06-13-2019 12:24 PM. Reason: Removed info re personal blog

Diagnosed June 2018 T2N2NM0.H.P.V 16+
35 radiotherapy sessions V M A T
2 chemotherapy sessions Cisplatin
lives in the U.K.
14 Jan 2019 pet ct scan showed cancer free.
on going hospital visits for next 5 years.

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