6.5 weeks after last radiation treatment
Hey folks, I have not been on here in a while. I went through some unfreaking real hell at week 6 through week 8. I know everybody is getting different sorts of treatment but I was an MD Anderson patient so I had 33 radiation treatments and I only made six out of seven chemo treatments. It is now 6 and 1/2 weeks after the very last of my 33 radiation visits and I'm still getting ulcers in my mouth on the back side of my jaw. Can anybody chime in here about when these ulcers will stop? Anybody have any idea when the radiation finally stops for good?
Thanks
Graham
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I had no ulcers, post-tx, but over a couple months the base on my two lower-back teeth became exposed. Was told it was due to the swelling from the Rads to the gums receding. Think it was a Periodontist who ended-up grinding the exposed portions of those two teeth away, so that's something to look out for.
And, of course, keep an eye on your teeth- Rads burn the enamel away, and your saliva glands that help keep your teeth clean took a hit. 1-1/2 years after my last Rad I took a drive to the U of Iowa and met with the Head Dental Doc at the U Hospital, because all the locals would tell me is it's my fault for grinding my teeth and that made no sense= 54 years old and only now the tooth grinding in my sleep is taking a toll on my teeth? Doc explained all about the Rad damage, could not believe I was not put on Flouride Trays, and I've so far spent about $1-K/year on my teeth since tx: 2 root canals, 3 Crowns, and rebuilding the tops on 12 front teeth (front lower several times).
When will it stop for good? There's a reason why they call Rads "the gift that keeps giving," Graham. Never mind the collateral damage to the top 1/3rd of my esophagus, it took some 10 years for bone to become exposed by a couple teeth on the top of my mouth...
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Graham,
My Radiation Oncologist warned me that Radiation can effect us for up to 1 year with Fatigue and other issues. With that said, around 8 months out of my final treatments, I had a couple of ulcers pop up in my mouth. Sent me into panic mode. Remembering what my RO told me I went back to my Baking Soda and Salt solution for about a week and they went away. I mentioned this to him on my next visit and he told me it could happen again, but it they don't go away in a timely manner, to call him.
My energy levels didn't really get back to normal until a bit over 1 year, and my Thyroid was beginning to fail. I am now taking med's for the failed Thyroid, Levothyroxine is what I am taking. Keep an eye on yours if you notice a lack of energy down the road. Don't forget, we "Cook" for about 4 to 8 weeks after our final treatment so you may feel tired during this time. Recovery from this is a slow process, so when we take one step forward, we may take 2 backwards for a spell. Don't measure recovery in days, but in weeks.
My Best to You and Everyone Here
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I'm not experiencing fatigue that much. I'm back swimming again. Once they took out the feeding tube 3 weeks ago I've been back in the water swimming. Started at a thousand yards for the first week and got up to as much as 3,000 and only swim to the level I feel like can achieve until I'm tired. I worked in the yard this weekend and was doing a ton of squats installing a drip sprinkler system and am pretty sore in my legs as a result, but I'm recovering quickly. The only gripe I have are these ulcers that seem to come and go. I can keep them at bay, though, with the salt and baking soda mixture and I'm all but off my gabapentin but time will tell. I have a CT scan on April 4th and a PET scan on May 4th. I started taking a huge amount of homeopathic drops from a botanical pharmacologist in Tampa, Florida. I just started the regimen yesterday. She said that we'll get rid of the lasting effects plus get rid of the virus in my system. Perhaps it's a bunch of New age Hocus-pocus but what the hell do I have to lose right? If you are interested I can give you the name of her place. The information was given to me while on a retreat for PTSD treatment of veterans. When I get information like that in an environment like that, I seem to take it on board. This was almost like I was destined to meet this person who gave me this information. Thank you for sharing your experiences and I look forward to hearing other stories as well. I have trays but they burn the living s*** out of my gums so I've been brushing my fluoride on every evening. Maybe I'll switch back to them.
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swim,
Marine said the same thing I was thinking - the salt / baking soda in water - multiple (6?) times a day. That simple solution made most of my mouth issues go away.
Another thing that worked well for me, was to drink lots of high pH water (9 or 9.5). If you happen to drink bottled water, try the alkaline option and see if that helps.
The last solution is time. It’s so tough to finish treatment, and not feel like it’s ALL over - but, you will heal up!
I hope you’re better, soon...
MG
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Yeah, part of the treatment with the botanical pharmacologist is all alkaline water with a ton of drops of homeopathic solutions. I'll snap a photo of what I am putting into my big glass of alkaline water each day for you all to see. If it interests you let me know. I can send you the name of the company that distributes these things. I spent around $200 for all of these.
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swim,
You’re way ahead of me. I suspect you’ll be feeling better in just a few weeks.
Hang in there, bud!
mg
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Swim ~ I can only echo MG guy! My mouth ulcers were so bad that they covered my mouth, gums, tongue, etc.. It was painful but I stuck to the baking soda salt solution and rinsed several times per day. I don't know for sure if that is what helped but it seemed like they all began fading around the same time and I want to say I was done with them at about the 4 week mark post rx.
My treatment ended early January and by mid February my ulcers were gone. I started getting more energy but I still don't feel quite 100% back to my pre-Rx energy. I did have COVID in April so that may be lingering as well but honestly I feel 90% so maybe it's just age! :-)
Best of luck on your recovery. A year from now you will be telling people it wasn't as bad (even though it was terrible) because the human body, with help of our medical community, can do amazing things!
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Yeah definitely the salt water and baking soda solution helped unbelievably well. The swimming as a form of exercise is super low impact but allows me to really stretch myself in a cardiovascular way and I would say it has helped my healing, but the ulcers in the long-term effects of radiation are a puzzle to me. Here it is week seven and I am feeling the ulcers from time to time. Damn
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Swim,
I have had some weird side effects come back after I started to feel better. No ulcers thankfully. I'll update my thread on what's occurred to me so far. Hang in there. You may need to try and use Lidocaine Viscouse on a q-tip if you can just numb that area. Also just use the magic mouthwash on that. My insurance didn't cover the Magic mouthwash. I have extra Lidocaine here and refills. (non opened bottles, I don't recall how much it was) But have you tried to just numb the sores? Also, I don't know if it would be easier on you, but I was never told I needed trays, but my radiation was more concentrated on my throat. I was something called MI Paste Plus. I also use mouthwash and spray that helps and Biotin. Also those mouth tablets you suck one Xylimelts.
I put the MI paste Plus on my teeth at night before sleeping, So it tends to stick in my mouth all night.
Thinking of you!
Steph
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I agree with everything that's been said, and will double down on the advice to take care of this now, and report any progression to your docs. My ulcers started a few months after treatments and were small at first. They didn't go away because they were the tip of the osteoradionecrosis iceberg and future hell for me.
mike
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It's funny how these ulcers come and go. I'm being patient as next week should be the 8-week mark after my last radiation treatment in according to a whole doctors the ulcers should stop. I had three beers last night for the first time in 4 months and I don't think I'm going to be drinking too often for the rest of my life. It was a weird feeling to have my throat numbed from the alcohol but still be able to feel the scars and scar tissue ie scabs in my throat. It was rather unnerving.
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I know what you mean. I don't know if you have had a bad cough. Once I start coughing it's hard to stop sometimes. I was coughing up blood I think up to 2 weeks after radiation ended. I am armed with cough syrup to take so I can't cough enough for that. It's a bit unsettling.
My neck was beet red at the end. If the outside looks like a horrible sunburn on the outside of your neck, makes you wonder what the inside looks like. When I was scoped at Chapel Hill his scope was able to take photos. My ENT here doesn't have equipment like that, and my radiologist has it on order. I had to ASK my RO to scope me the last time I saw him. (3 weeks after I was finished with treatment) I wonder if he would have had the equipment there if he would have taken a photo of the scope. I am not sure if I would have wanted to see it or not the last week or radiation.
I'll tell you though, for me scoping is never fun, but my RO is not as gentle as my ENT, and I noticed the last few time it is tough. I think due to being swollen. Do you have fluid buildup anywhere?
You probably have it worse than me because you had chemo. Those mouth sores are much more common due to the chemo. With the drinking, I have no idea if it's really alcohol, or alcohol + cigarettes. They always say it's from smoking.. That's what they claimed mine was from after 10 years of not smoking. Also, mine was HPV positive and my RO never brought that up.
What did your arsenal of doctors say at MD Anderson? Quit completely, and or cut down to very minimal? However, yours was tonsil and mine was on my vocal cord. Makes a little bit of a difference.
It's nice to hear from ya again.
We were sort of coasts apart but going through treatment at the same time. I wish you would have found the forum sooner.
-Steph
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The docs said to listen to your body. I had three beers and today I feel rather terrible. Trips to the bathroom over and over, queasy stomach etc. Wtf? I have listened to my body, so no more beer. I will try tequila in a couple months in Costa Rica but that'll be it. My outside neck healed perfectly within 2 weeks after the last radiation session due to Meliplex AG application every day. I changed it out and secured it to my neck with a gauze band. I slept with it and wore it everyday until the miracle occurred. It was unreal to watch. MD Anderson gave it to me along with some surgical scissors to cut it. That stuff is miraculous.
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My neck healed up quickly as well. You couldn't even really tell the second week. Just the first week pretty much made it better. It was that quick. What is even stranger is that it never peeled. I never needed to use anything special or gauze on it.
I've seen some photos of some bad radiation burns. My neck never got like that, but I was warned the 7th week it was getting to red. That weekend on my break off it seemed to heal enough to get me through the final week. My neck actually looked better the 8th week than it did the 7th.
I honestly think that chemo just makes radiation so much worse on people. You may be a bit fairer skinned than I am. I am so glad you were able to go to the #1 hospital, but instead of having the Landrover to show for it, you've got your life and had amazing care.
Costa Rica! You deserve that after what you've gone through, and more. Make sure to seriously use that SPF - all around your face and neck and shoulders. Get a cool hat for the trip as well.
When are you thinking about going back to work? Are getting antsy being at home?
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Haha! I should have phrased it differently. I should have asked if you are still taking any. Some people are given them for those ulcers so people are more comfortable. The MM and Lidocaine do not last very long. It's not really expected for people to rely on those for the pain all day, moreso just for when they are eating. I was just wondering if you are still taking pain meds, if they aren't helping the pain - you should tell them. These ulcers I hear about from treatment sound incredibly awful. I have not had to endure them probably because I didn't have chemo. Just radiation.
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No problem. I just think you should bring it up to them. Until the ulcers get under control you may want to ask for something that will help make you comfortable, or you'll be swishing all day and use all your other meds. I found that my insurance company loved to not cover much for my medications through treatment. I guess that was some way to get me back. So, it would have gotten extremely expensive if I swished all day to keep myself numb, even on Novocain Viscous... But the Magic Mouthwash was $93.00... I'd have to look up what Lidiociane is.
The insurance companies find ways to get their money back while the doctors are using about every code possible charging your insurance company and scheduling you with every possible therapist. I thought it very early to set up an appointment with me with a PT and a Speech therapist 2 weeks into radiation. They want to get as much as they can out of the insurance company. It's so obvious. My PCP told me to not bother with any of that until I was finished with treatment as I was still forcing myself to eat (I had to appetite) They wanted a barium swallow test, you name it.
Now I just need a PT to help with the Lymphoedema if exercise and my own massage do not get rid of it. It gathers up around above my clavicles at the base of my neck.
Listen to your body, Mike.
If you're in too much pain tell them. They should not hold pain meds from a cancer patient that has ulcers unless you just wish to not go that route. The only other idea I had to save the lidocaine and MM was to just dab some on the ulcers with a q-tip. Also the saltwater and baking soda since quite a few times a day NO alcohol based mouth wash... You know the drill. Biotene - and you could probably find some Flouride paste in your mouth at night at the drug store. I use MI paste, CTX4 mouthwash, and CTX2 mouth spray. I get it right off of their web page. I first got it from my dentist.
I wish I could help you more...
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