Mouth sores

DebbieK

Do the mouth sores associated with chemo (caelyx) come on suddenly or gradually?  Other than good oral hygiene is there other ways to prevent or stop the progress once started?

Fearless_Moderator

Here is a direct cut and paste of an email to me from my fellow survivor JL on the subject of her more recent experiences with Caelyx. I posted this in answer to another Discussion thread a few months ago so recopied it for you.  It addresses more than just your question but thought it in its entirety might be helpful.   It may sound a bit daunting so to add some context, she already has a predilection to skin and dermal issues so her rashes were somewhat expected.  Everything she does or takes is either prescribed or vetted by her oncologist as appropriate. Finally and most importantly we're of the understanding that the efficacy of Caelyx and Avastin are slower to be evidenced so patience is needed.  Her first scan, compared to scans following treatment with other chemo drugs, was disappointing and might have led one to believe the treatment was having no effect but two months later and as recent as last week, her latest scan shows everything fully stable and a very very significant drop in her CA125.  Other that that preface by me, here are her own words of support to you and any others:

"As to my treatment with Caelyx (& Avastin), I have found the side effects generally get better after the first couple of cycles. Personally, Day 1 & 2 have presented with a face rash which anti-inflammatories help.  I take Dexamethozone oral prescription for 3 days following chemo. I also add a 1/2 Reactine (Centirizine) as needed if the rash gets redder & hotter.  Ice gel packs are soothing too. Usually, by Day 3/4 the face rash resolves & my energy is coming back. Sometimes a lower back pain kicks in after sitting but my doctor believes it to be from the Avastin. I can deal with these pesky  discomforts. 

 

Over this period of 3/4 post chemo days my tummy is off but I can still eat small amounts of softer foods which helps actually.  Taking Metonia a half hour before eating does work if this queasy feeling persists.  I did a few times just to get rid of that yucky feeling.  My voice is sometimes hoarse even now but it usually goes away. Gargling after brushing with a tsp. of baking soda in a cup of warm water helps to clean mouth & keep mouth cankers at bay.  I leave a glass ready in bathroom to gargle & rinse every time I’m in the bathroom.  This one is manageable now. 

The roof of my mouth didn’t get sore until the second round. A couple of cankers were rather painful.  I finally hit on an over the counter med called ZILACTON-B after trying the prescribed Magic Mouthwash & other oral gel type treatments.  It was the best for encapsulating a canker so you could  try eating & stayed on for a couple of hours.  I tried several tooth pastes as most sting & I finally hit on one the dentist gave me CLINPRO 5000. I use a small amount with lots of cool water still to this day even though I haven’t had a sore for the last three cycles. Definitely spicy or minty flavours enflame my mouth so I stay clear of them.  Crusty foods can irritate as well.  My taste buds have continued to be somewhat off but have started to come back lately.  Good one!

I had been warned about a midriff rash under your breasts & sure enough I had a pimply rash come & go during cycle 4.  I used a ton of creams, mostly Glaxol Base but eventually found Penaten cream for diaper rash worked well.  This rash has not come back but a few spots sometimes appear & I put on Penaten & they go away!  Very happy about that. 

Keep your hands & feet slathered in a good lotion several times a day.bI have tubes & pots on every table. Vaseline covered by cotton socks every few nights helps my dry feet.  Shower, bathe & wash in cool water. Heat brings chemo to surface of skin.  My hands feel a little tight in the morning & somewhat numb so it is probably a little neuropathy.  Cold relieves this hand side effect so I grasp onto a cold jar or can for a few minutes in the morning.  Problem solved.  

When I read this over I hope I haven’t over whelmed you. This is my experience & I wouldn’t change my treatment.   What I’ve learned this time is be proactive & don’t wait for a side effect.  I should add my oncologist has reduced my dose of Caelyx slightly to help with any of these side effects.  

So to finish off .... gargle throughout the day,  have over the counter meds ready, use plenty of body cream, take prescribed meds to get over a hump,  get fresh air when you can, persevere & you can manage OK.   It may take a few cycles & then again I hope you might have no side effects.  

PS. I’ve been having CT scans every 6-7 weeks & a heart ECCO about every 2 months which is recommended for Caelyx patients.  I forgot to mention I was prescribed 25 mg of Vitamin B 6    six times a day since my first chemo.  Two in morning, at  noon & at night.   For hand & foot skin  issues.   Seems to be helping. 

Finally I believe there have been other discussions about Caelyx you may want to leverage.  You can source those or discussions that might exist on just about any topic you by typing in a key words or words into the search box on the upper right of your screen. The list of existing conversations or references to your topic will pop up and you can click on each to flesh out the full discussion. 

kastoyles

I experienced some oral issues as well and found that gargling with salt water helped. Now and then I still have minor problems and gargle several times a day for a couple of days. I've also heard gargling with baking soda and water is beneficial.