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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Arimidex and mouth sores (ulcers)

Topic: Arimidex and mouth sores (ulcers)

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Jul 9, 2010 07:35AM

chrissyb wrote:

Hi ladies, what wonderful women you are!  I wish I had found this site seven years ago when I began this rough road. I have read quite a lot of these strands since joining and they encourage me and enlighten me and I thank you all from the bottom of my heart.  Now to my current question.  Can anyone enlighten me with ideas of how to control mouth sores (ulcers) as this one se is and has driven me mad through every bit of treatment.  Currently I am using salt and bicarb warm water rinses, a commercial mouth wash that has a little local anaethetic as well as vit B3, B6 and B12 for the nervous system to help control stress.  These things get me free for about 1 week out of 4.  I would really like to extend these odds if possible.  I mentioned these things to my PCD but he has no other answers.  Hoping someone here who has had the same problem could give me some other ideas.  I am currently on Arimidex. Love and hugs to all. chrissyb

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Jul 9, 2010 08:40AM Medigal wrote:

Chrissyb, excuse my ignorance but is your PCD the abbreviation for a dentist? If not, I was going to recommend you discuss this with your dentist.  I have never had mouthsores but partner has and all they did for him was to tell him to use an over the counter mouthwash like Biotene.  What you really need to do is get your dentist or primary doctor to look at the sores and give you some idea of what they think is causing them.  For just general mouth sores we all get periodically, what you are already doing seems like what we would be told to do until it clears up.  However, I would want some answers from my dentist or primary care doctor as to what they think is the cause if you have them for an extended period.   I noticed that Arimidex can cause "dry mouth" and that Biotene liquid is what I was given for dry mouth some time ago.  You might want to ask your dentist/doctor if they recommend it before you use it if you decide to get it.  Best of luck to you!

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Jul 9, 2010 08:52AM chrissyb wrote:

thanks medigal, PCD is primary care doctor. I have already been to dentist and oral surgeon. Both just suggested fluoride free toothpaste which I use.  I do use a mouthwash for dry mouth beside the one I use that has local anaesthetic. I think I will just have to accept the problem and continue to learn to live with it. chrissyb

I found my peace which gave me strength. 52 at dx. (Sugar Glitter Cheeks)

Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Jul 9, 2010 08:58AM thegoodfight wrote:

Hi Chrissyb,

I didn't have mouth sores but I had a tongue problem during and well beyond chemo. At first they thought I was dealing with mouth thrush.   I had been using a presciption mouth wash which helped a little but it would return again and again.   I finally went to an ENT and he diagnosed it as an autoimmune condition called burning tongue.  He said it would probably be recurrent forever but prescribed a concoction that I had to have mixed in a compound pharmacy.  It started out semi solid (like a marmalade) consistency and melted in your mouth.  I swished with that and spit it out and got some relief.  This went on for a few more bouts and now I am happy to say I have been clear for about a year................oh I hope I have not jinxed myself........lol.  If you would like me to send you the names of all the rx's I took I will be happy to.

Caren

Dx 7/14/2008, IDC, 3cm, Stage IIa, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jul 9, 2010 09:54AM chrissyb wrote:

Thanks Caren, I would really appreciate that.  Perhaps I may find something that will help me. I think I will also ask my PCD for a referal to an ENT. I hadn't thought of an ENT.  Thanks again.....I just knew I'd get some good ideas here. By the way, the mouth sores are on my tongue as well. at the moment I have 3 medium and 1 small one beside the ones inside my lips and on my cheek.  A real pain...lol. love n hugs. chrissyb

I found my peace which gave me strength. 52 at dx. (Sugar Glitter Cheeks)

Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Jul 9, 2010 12:06PM thegoodfight wrote:

Hope this helps.   The first mouthwash I was given was NYSTATIN.  When I needed something stronger they gave me something called  NYSTATIN 100000 U/ML SUSP TAR............that's how it is written on the label.   Sometimes these are called "magic mouthwash"   Further into the problem the ENT prescribed the compound  300  BENZO/LIDO/NYS 20% / 2% PL.   That is how it is written on the label and it must be kept refrigerated.

See if this helps, and keep me posted.

Caren

Dx 7/14/2008, IDC, 3cm, Stage IIa, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jul 9, 2010 11:23PM chrissyb wrote:

Thank Caren. I see my PCD Tuesday week so will get the referal at that time.  I let you know the outcome. Love n hugs. Chrissyb

I found my peace which gave me strength. 52 at dx. (Sugar Glitter Cheeks)

Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Jul 10, 2010 06:59AM Resting wrote:

Chrissyb,

   I've had the mouth sores, dry mouth, horrible taste and burning tongue. Have tried a lot of different things but what's working at present is a perscription mouth wash ( mine is made with mylanta, liquid benedryl, and nystatin ) My dentist perscribed lidocaine for the painful sores and it works pretty well though it tastes bad. I use the back of a plastic spoon to dab it on, swishing is hard because it's thick. Also, of all things vit E helps. Got this tip from an oncologist. I bite a hole in the top of the capsule and squeeze the oil onto the sore and even on the top of my tongue. You can use it as often as u like. This sometimes helps with the bad taste too. Another thing, L-lysine is helpful. You get it in the vit section of the pharmacy. Once I have a sore I take 1000 mg day and night until they are gone then 500mg daily to help prevent them. Sometimes sucking on sugar free werthers hard candy helps with the bad taste, sometimes nothing helps. I know this is a lot of info. maybe it'll help. If your like me you'll try just about anything to get rid of it.

Sorry to hear it can be an ongoing problem. I've just had it for the last three weeks. I finish my 12 taxol's at the end of July. Was hoping it would go away forever!

Lump,4AC/12T, 6wk R, Tamox "It's in accepting what is given that God gives Himself"

Dx 11/30/2009, IDC, 2cm, Stage IIa, Grade 2, 1/23 nodes, ER+/PR+, HER2-
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Jul 10, 2010 07:30AM thegoodfight wrote:

ECT,

Don't worry about it continuing.  Mine has been at bay for about a year now.  THe ENT first diagnosed it as a autoimmune syndrome which would mean recurrance, but I think now that it is a year it was probably still a side effect from treatment.   That's my story and I'm stickin' to itWink.  BTW my treatment started with TC but after a bad reaction I was finished up with 6 weekly taxol's instead.

Caren

Dx 7/14/2008, IDC, 3cm, Stage IIa, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jul 10, 2010 09:53AM chrissyb wrote:

I hope mine is just the meds although last time I had a crop of them that I couldn't get rid of was just before I was dx'd with the mets.  Don't panic girls, I am seeing my PCD on Tuesday week as well as going for CT and Bone scan just to make sure there is nothing to worry about.  Oh, I see BTW a lot and I can't for the life of me work out what it means. anyone? Love n hugs. chrissy

I found my peace which gave me strength. 52 at dx. (Sugar Glitter Cheeks)

Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Jul 10, 2010 11:12AM thegoodfight wrote:

Chrissyb,

BTW it means by the wayWink

Dx 7/14/2008, IDC, 3cm, Stage IIa, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jul 10, 2010 12:12PM rreynolds1 wrote:

The health food stores sell aloe drinks which are very healing to the entire digestive system.  I have never needed it myself but know many people who use it.  Sounds like an acidity issue in your system..like eating too many oranges can cause.  If I wasn't getting a solution from traditional medicine, you might want to check with a naturalpath to see if he/she can help.  I had sores as a child once so I can only imagine how painful it is to get them so often.  Ouch!

Roseann

Roseann

Dx 2/2/2009, ILC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jul 10, 2010 04:58PM JO-5 wrote:

chrissyb,

I did not have chemo - but I had mouth sores on a regular basis (about once a month)  for the whole time I was on Arimidex. I used several over the counter rinses.. but ended up using mild salt water and tea!

I drank hot tea and would take the tea bag while it was still very warm and hold it on the sore spot or canker sore. That helped more than anything.

I asked, researched, and never found anyone that had the problem. I was told that it might have something to do with the drastic reduction of hormones in my system, which was caused by the Arimidex. I have been off the Arimidex for a year and have much fewer episodes.

Just thought I would let you know someone else had the same thing.

JO

dx.04 IDC, tumor 1.4 cm, stage 1, grade 3, lumpectomy w/clear margins, 0/16 nodes, ER+/ PR+ over 90%, HER2 negative, 35 rads w/3 boosts, Arimidex 5 yrs.

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Jul 10, 2010 11:42PM chrissyb wrote:

Thanks to all you ladies, you are all gems. As horrible as they are, just knowing that I'm not the only one is actually a comfort.  Sorry I din't mean to sound horrible, but you know what I mean. Maybe it is the Arimidex and if it is I'll just have to get used to them as I'm sure as heck not going to stop the A until it stops working for me.  I'm sure there are a lot of ladies out there doing the same with the meds they are taking. Love n hugs. Chrissy

I found my peace which gave me strength. 52 at dx. (Sugar Glitter Cheeks)

Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Jul 11, 2010 09:16AM, edited Jul 11, 2010 09:17AM by Shrek4

If you were prescribed Nystatin and it worked - then the culprit is a fungus. Nystatin is mostly prescribed for candida and other fungal infections of the mucous lining of the mouth, vagina, etc. Usually long-term antibiotic treatment is associated with Nystatin to prevent the candida infections.

Did any of these doctors take a swab from the sores to do a culture?

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Jul 11, 2010 12:49PM chrissyb wrote:

Hi Day, Have already done the antibiotic, antifungal, antiyeast thing and nothing worked thats why I am now thinking se for A.

I found my peace which gave me strength. 52 at dx. (Sugar Glitter Cheeks)

Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Jul 11, 2010 03:46PM Resting wrote:

     Day and Crissyb 

       Nope - no swab or anything - the perscription was called in for me by a dentist who is a friend and thot I needed it. The oncologist took a look after I was healing up and thot it was mucositis. Not sure anyone really knows but I still have the dry mouth and taste issues every week. I usually get a day or two before the next treatment where I feel like normal again. Keeping the sores at bay right now and counting down the txs. I'll be on Tomoxifen not Arimidex after rads,maybe that's not as bad a SE for that therapy. 

   Thx for all the info on this - it helps :-)

Lump,4AC/12T, 6wk R, Tamox "It's in accepting what is given that God gives Himself"

Dx 11/30/2009, IDC, 2cm, Stage IIa, Grade 2, 1/23 nodes, ER+/PR+, HER2-