| OP |
My husband has had 10 radiation treatments (20 more to go). Despite his diligent use of the baking soda/salt rinse, the mouth sores have hit full force. Does anyone have any suggestions for relieving the pain? He just started gabapentin and has the lidocaine rinse. Thanks so much.
Husband DX’d 1/17/19 with SCC on lower left gum
10 sessions is about the time side effects start kicking in!
Take a look at foods you’re eating if they have sharp edges, are too acidic. Try eating soft l, bland foods! Take a look at your tooth brush if it's too hsrd. You want one that is soft or a baby brush! Mouthwash shouldn’t be full strength. Mix sine with water and none of that green or blue stuff with alcohol.
Do you have a feeding tube? It shouldn’t be used until you need it, but it needs to be flushed. Do the mouth and neck exercises wether you have a tube or not.
Do you have any pain medication? You may need some, and don’t wait to get it until it’s needed! Theagic mouthwash has 20 other names, but is pretty good to numb the mouth. They say not before eating lol, but that’s what slot of people use to eat! Just talk you your doctor as it’s a prescription rinse.
Things may get more difficult From now on until several weeks after treatment, and some beyond. If you have any questions, ask here and if course with your doctors.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
In addition to Pauls great advice, you could pick up manuka honey at any health food or grocery store that sells organic type things. The higher the number, the stronger the manuka honey... but unfortunately the cost also goes up according to strength. Using at least a #12 is what I remember previous members saying worked best for them. Directions are to take one teaspoon of the Manuka honey and swish it around as much as possible to hopefully cover any and all new mouth sores then your husband should swallow it after about a minute of swishing the honey in his mouth.
Another helpful item is Magic Mouthwash (MM) which is available thru a doctors prescription. It can consist of a several varying ingredients. The MM I had was maalox, benedryl and lidocain. Many here have nystatin added to help with thrush which is common for OC patients to get. MM ip3t;;[pp]qws a temporary numbing liquid (usually only lasts 20-30, maybe 40 minutes) the patient swishes it around in their mouth trying to cover all the mouth sores with MM, then they should spit it out... do NOT swallow it!!! If swallowed it can cause other serious issues. Ask your husbands doc about this and see if they can write him a script with at least 3 refills. Not all pharmacies will make this so dont be surprised if you go to a couple before finding the right one to make it. I seem to remember something about a compounding pharmacy being the right one??? If your husband has mouth sores and needs this, he's probably made it thru the first couple weeks.
Something els that can help is using a water pik on its lowest setting to help your husband to keep his sore mouth as clean as possible. Its often too painful to floss during rads for most going thru OC treatments. Your husbands dental care after having OC needs to be more thorough than he ever did before OC. When OC patients have mouth sores popping up all over the inside of their mouth its not easy but with a water pik it will shoot warm water between the teeth doing a better job than flossing. Using warm water and a couple teaspoons a mouthwash thats alcohol free or the prescription mouth rinse like peridex.
As rad treatments continue your husband if hes like most of us should unfortunately gradually feel worse and notice the side effects becoming more difficult. Rads are cumulative where they continue working even after the treatments have stopped. Most expect to get well quickly after rads end but that happens in only a very few rare situation. Recovery never follows the timeline we all imagine, this can be hard for patients to handle mentally. Im mentioning recovery as something to be aware of down the road, its not anything to be concerned about right now.
Its best to focus on is what is within your and your husbands control.... his intake. Every single day until at the very least 1 year after rads ends OC patients/survivors must pay attention to everything they take in and hit the daily minimums of 48-64 oz of water and 2500+ calories per day. The further along patients go, the more it becomes a challenge to swallow, manage the mouth pain and keep weight on. To ensure your husband does everything he can to help keep up with his ability to swallow, he should be taking small sips several times a day even if its uncomfortable. None of this is easy for any of us but somehow we have overcome the hurdles and survived and now pass along what tips we picked up to others like you and your husband. I cant stress to you enough how vitally important it is to hit the 2500+ calories and 48-64 oz of water every single day!!! If one day your husband isnt doing the best with his intake and comes up short, thats a warning sign to immediately get him back on track. Its far too easy to skimp thinking tomorrow it can be made up. Unfortunately, tomorrow never comes and the intake very quickly turns into a huge problem where it becomes a game of catch up which never happens. I fell into this trap and suffered far more than necessary with malnutrition, dehydration leading to a few hospitalizations and feeling so awful I actually thought I was dying. Im not telling you this to upset or scare you... I want you to be prepared to manage everything, to spare your husband from suffering like I did.
Lastly, as caregiver you have a difficult job!!! You must feel overwhelmed at times like you are carrying the weight of the world on your shoulders. Do yourself a huge favor and take some time just for you. Going to a movie, out to lunch with friends/relatives, getting a manicure or pedicure or just going for a long walk on a nice day can help you feel refreshed and ready to take on the world again. If your husband is ok to have someone else drive him to treatments one or 2 days a week that could be your "you" time. It does a patient good mentally to interact with another cancer survivor or even a close friend/relative talking about other things besides cancer related topics. If you dont have someone to assign a driving day to you can always try calling the American Cancer Society (call anytime 24/7) to inquire about their driver programs where a trained caregiver or cancer survivor volunteer their time to drive patients to treatments. I used this service a few times even though my treatments were 45+ minutes each way from my home to the hospital. Once I completed my treatments I became a volunteer driver myself. It was a great feeling to help other cancer patients/survivors with what I considered a very small task but to them its a GIGANTIC help and favor. I greatly enjoyed talking to my drivers and the people I drove too. Im sure your husband would find this to be a very positive experience as well. If any friends or relatives have offered their assistance nows the time to start taking them up on it. This way in a couple more weeks when your husband will probably be feeling lousy, everything you need help with will be in place already. I also noticed several people would call, text, email me to keep an eye on me but that quickly became overwhelming when I was not feeling well. I "assigned" one person as my contact person who shared whatever I said was ok to share and they became like a gatekeeper in helping to keep my updates I only had to give to one person. Sorry to get off track, I do tend to ramble on at times!!! There are several other minor things that can make life easier for you and your husband, please let me know if you would like a couple more tips and I'll happy to mention a few more.
Hang in there!!! You both are doing great so far and we're here to help you both.
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
| OP |
Thank you so much, Paul and Christine.
I am very grateful for any tips and suggestions of any kind.
My husband has a lidocaine rinse which he is using on the sores. We might be using it wrong as it doesn’t seem to help him much. He has tried swishing and spitting as well as dabbing it on the sores with a q tip. Because of dental alignment issues from his mandibulectomy last February, he is already on soft foods. He says his toothbrush hurts so we will shop for a new softer one today. He has gotten mixed messages from the dental team about using a water pik.
So far, his appetite is still good but I am continually waiting for the other shoe to drop.
He is being treated in NYC so for now we are walking to treatments. The hospital is actually moving his treatment to a facility closer to where we are staying just by coincidence.
I am planning an afternoon off tomorrow when a friend of his comes to visit.
This forum has been so helpful to me. Thank you for all of the work you do to keep it going.
Husband DX’d 1/17/19 with SCC on lower left gum
Jan 16th, 2020