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Mouth sores and problems at 4.5 weeks out of rad

Sam999
Posts: 307
Joined: Mar 2012

I am out 4.5 weeks from radiation (no chemo) and still have mouth sore and sore throat. Is this normal? I also developed thrush for the first time this week. Doc has prescribed nystatin.

I also have dry cough becuase of dry throat. Some days are good and some days i have cough all night. Xylimelts still burns my mouth so cannot use them. I use oragel and stoppers 4.

I am still on liquid diet becuase mos of the stuff burn my tongue, even banana burns! I can eat water melon and avocado. I am getting the taste back slowly. I could tasts salt last week ( a little bit).

Is this normal? I feel like i am healing slower. I am not takinb anything to boost my immune system. Going to look into some of the suggestions given in one of the other post.

Thank,
Sam

phrannie51's picture
phrannie51
Posts: 3931
Joined: Mar 2012

I'm 6 weeks out, still have one sore in my mouth, after just getting thru 3 weeks of sores so bad I had to use my tube to eat. I'm still on Boost and Ensure...not eating anything because 98% of what I try stings like crazy. All I can taste is salt! Everything is ultra-salty to me, even water.

I go thru periods where that dry throat cough won't leave me alone....and then it suddenly disappears for 2 days...why?

I still have two more chemo's to do...one this coming Tues...and I'm nervous, as it was the one I had a month ago that brought all these mouth sores, and they took 3 weeks to get healed. I'm hoping like crazy the second time around with this new chemo drug will be easier on me.

So....we're either right on time healing wise, or we both slow :)....it does get tiresome waiting for improvement.

p

Sam999
Posts: 307
Joined: Mar 2012

Yeah it is getting so tiresome to wait for imorovement. For you, chemo could be the cause, i have no reason to be like this. I am wondering if this shows poor immune system. Oveall i dont get sick with cold,cough etc. So dont know if immune system is to be blamed. I would say i am getting a bit lazy in mouth swishes. Just started l-glutamine swishes again today. Will try mugard and capahasol as well,

Sam

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

yah...I'm four weeks out from radiation, and it's still 'cooking'. mouth is dry and burns, with an ugly burn on the outside (and no doubt inside) of my throat. there isn't really a 'normal' for this stuff--but if there was, you'd be it. lol.

Mrs. Sarge
Posts: 203
Joined: Apr 2012

Well ya'll.....I'm 6 weeks out and just now not coughing/choking/gagging all day.....had no chemo and rads to a very small area, only about 2 mins total.....so sounds like ya'll are about normal with the extensive rads you had. Only slept about 3 nights without meds. Mouth still dry, can eat most things but have to watch the size of the bites!!! My voice a little better (people can actually hear me and I might be able to order at a take out window!!!) which haven't been able to do for about 10 weeks! I don't know if I've ever seen Oasis mouthwash/mouth spray on these boards but it has been the best for me....of course mine is dry throat, not mouth since my rads didn't affect my salivary glands. I've tried Stoppers4, Biotene, other things and really all that has helped is a swig of water followed with a spray of Oasis which has helped me go right back to sleep. We gotta keep plugging on!!!!

alaskanjan's picture
alaskanjan
Posts: 42
Joined: Apr 2012

It would seem that there really is no "normal" when it comes to getting over the cancer treatments. My husband finished his last chemo/radiation on Feb. 7th and he still has a sore mouth. No weepy looking sores now but he still has a very sore mouth, swollen cheeks and gums, and complains that his throat is sore sometimes with a productive cough. He is able to eat a few soft foods but it usually isn't worth doing for all the discomfort it causes so he mainly has Ensure and milk. I know that it is so hard not to get discouraged but I also know that it will get better. I can see how much better he is than he was when we came home...the gradual changes always are more apparent to others than to the one that is living with it every minute of every day. As hard as it is, try to keep focused on knowing that even though it takes more time than you would like, it will get better. Godspeed to a complete recovery!

CivilMatt's picture
CivilMatt
Posts: 3175
Joined: May 2012

Hi Sam,

You sound pretty normal to me. It is just a pain in the neck how slow we seem to heal but you will. It happens so gradually you may not even realize you are better this week from last. Water melon and avocado may not have been on your good list a month ago, but they are now and to taste a little salt is better than tasting no salt. Remember your body is still cooling down (inside and out) from the radiation treatments. Make sure you check with your doctor before any supplements.

Best,

Matt

Tim6003's picture
Tim6003
Posts: 1501
Joined: Nov 2011

I too think you are on a normal road here..

I finished my last rads treatment Janaury 20, 2011. ...I specifically remember how loooongg it took for me to get what I thought was "better" . I too felt way behind the class.

The first 4-6 weeks were brutal...the next 4 weeks were not much better. I slept the enrire month after rads and I was in some hard pain. In fact I wore 2 Fentynal patches and took 6-7 Narso A DAY for the first two months ....towards the end of the 3rd month (that's 12 weeks!!!) it was like one day, suddenly the mucous was gone...then the pain seemed to go down then my throat was able to tolerate a little to eat (very limited)....this past June (1st week of) or maybe it was last of May is when I got my feeding tube out.

So...I said all that to say I really think you are normal..if not doing a little better than I even .. :)

Best,

Tim

hwt's picture
hwt
Posts: 2086
Joined: Jun 2012

I believe it was week 4 after Tx that my 3rd case of thrush popped up. Week 5 seemed to be my turning point and week six my energy returned. I hope the same for you.

Sam999
Posts: 307
Joined: Mar 2012

Thanks everyone for the responses, this makes me feel better as it ensures that what i have is normal and nothng wrong with my immune system.

Thansk

sunshine_64
Posts: 27
Joined: Apr 2012

Hi All:

I share your dismay - I am 12 weeks out from my last radiation and just found new mouth sores today, after battling an infection within the mouth sores for the last 4 weeks...I too am extremely discouraged. I have tried mild (just nystatin & benedryl), all the way up to the Mary's Mouth wash, which I just started, and nothing seems to be making a dent in these sores. I do the salt/baking soda mouth wash constantly as well, and doctors also tried several antibiotics and one anti-viral tablet prescription. I am also a little concerned that the Mary's mouth wash (which contains tetracycline) seems to be staining my teeth brown (a concern supposedly only for children). Doctors dismiss this issue - it's a trade off I guess.

The problem with my mouth sores is not so much one of pain (which is there, but pain meds help) than the fact that the end of my PET-scan "window" is approaching, and doctors say that the results will be marred by false positives if my sores are present.

Very discouraging at this point, as I am sure you can understand. I am pretty sure that my low WBC indicates my immune system is still compromised, but doctors haven't said much about how to deal with this. I am eating well (as well as I can with mouth sores, as I am sure you all can relate to), exercising, and trying to be vigilant. I expected to be so much better at this point! I hope none of you last this long with the mucositis.

Tonsil Dad's picture
Tonsil Dad
Posts: 489
Joined: Dec 2011

Sam, re-read the email regarding the immune system support
you asked me to send a while ago about the product I have been taking
and if sunshine would like the info please contact me through the CSN email
or personel email on my profile page.

God bless
Tonsil dad,

Dan.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

First off sorry you are still having sores, hopefully this will soon, very soon go away. I just wanted to touch on the mouthwash with tetracycline. It may be staining your teeth but it should only be topical stains which the dentist can polish off. The stains in children are more what's cold intrensic stains. Those stains either come from mom taking tetracycline while pregnant or from babies taking it while their permanent teeth are still buds. Those kinds of stains can not be removed because they are inside the tooth and not surface stains.

Now for those mouth sores, do you rinse out after every meal? Nystatin can be used for that and usually works well. Have you made sure you don't have a case of thrush? That can be both painful and annoying!

Good luck to you.
Billie

Sam999
Posts: 307
Joined: Mar 2012

Dan,

I am doing really well now at 8 weeks out. I would like to do something with immune system but more so naturally, i am a bit hesitant to take anything externally to boost it. I will definately read up more on the product you are taking. Some articles I read seems to indicate we got the big C becuase our immune system did not fight it, not sure how much truth is to that.

Thanks,
Sam

Tim6003's picture
Tim6003
Posts: 1501
Joined: Nov 2011

Hi Sunshine..I too felt like it took forever to get better....mine was a bit better than yours...took me about 9 weeks to lose the mucous and pain...my last rad was Jan 20 2012 and I just got off the feeding tube this past June (was fully using the tube up till May).

I still get uclers or mouth sores in my throat. I noticed they seem to come after I have worked a few straight 12 hour days and not really done a good job of rinsing or keeping my mouth moist (my job requires I talk CONSTANTLY).

I have a product my oncologist gave me I really think is helping...it's called "reBalance" by Vaxco Pharmaceuticals.

Best,

Tim

Tonsil Dad's picture
Tonsil Dad
Posts: 489
Joined: Dec 2011

Chech out OraSoothe for mucositis, it is approved by the FDA but
it is all natural ( I have no affiliation, it was mentioned on the board before )
The less medication you put in your body the better (especialy for your liver )
As for a cause for our cancers I firmly believe that it is from a compromised
immune system. Alcohol and smoking are contributing factors but there are
too many people on here who never did either. Your immune system is your
only line of defence for any virus, bacteria or any illness in the body. As doctors
have found out your tonsils and appendix are the store houses for your NK cells
and T-cells that is one of the reasons they don't take them out like the used to
when we were kids, unless it is necessary (appendicitus, reacuring tonsilitus ect..)
So I was just voicing MY opinion on why the immune system is so important. We
are everyday weekening our immune system with the foods we eat, medications
we take and the lifestyle we choose but the #1 is STRESS which kills the immune
system more than anything.

DON'T STRESSSSSSSSSSS.

God bless
Tonsil dad.

Dan.

sunshine_64
Posts: 27
Joined: Apr 2012

Thanks to Tonsil Dad for his recommendation - but it turns out I didn't need the medication.

After several weeks of dealing with what I thought were continuing mouth sores, at 15 weeks out since last radiation treatment, my radiologist finally looked at the sores. I was surprised--pleasantly--when she told me that the pearly-white bumps on either side of my tongue are instead blocked ducts on the tongue that indicate my salivary glands are coming back. I found nothing about this on the internet, cancer sites, and my doctor did not explain this possibility when I emailed her, so I worried needlessly.

I hope this helps someone on this website. These are tiny, translucent, round white bumps that suddenly show up on the side and underside of the tongue. They can puff up like miniature water balloons, break, and then more appear. They are irritated, so they hurt a little bit, but nothing like the normal radiation mouth sores. Mouth wash did not alleviate them. Nor did the salt water/baking soda rinse, but rinsing with this seemed to calm them down some.

At 16 weeks out now, I still have them, but no longer worry about them.

Crazymom's picture
Crazymom
Posts: 322
Joined: Nov 2011

I had mouth sores for probably 8 weeks. Hang in there. Ann

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