Hi ladies
I’m on carboplatin and caelyx every 4 weeks, for 1st recurrence had 4th infusion August 4th, always a week late because neutrophils haven’t recovered.
I’m sure that some of you ladies have some good advice for a sore and ulcerated mouth,🤔 I have some gelclair oral rinse which helps a bit, is their anything a doctor can prescribe to help heal the ulcers ?
Thanks Maggie
Hi Maggie I used sodium bicarbonate as a mouth rinse and bonjela to ease the pain. I also took Vit B Complex and since taking this I’ve not had any more ulcers, might be coincidence though. I’m on weekly taxol
Thanks will try that.
Hope your doing well on weekly taxol 🙂
Yes I have number 15 of 18 tomorrow as part of the CEBOC trial. Getting tired now though!! Good luck with yours too and here’s hoping we get a good remission x
Hi Maggie, I understand the sore mouth thing , Have just had my third lot of Carbo/ Caelyx for first recurrence , after number one my oncologist prescribed me BENZYDAMINE mouthwash ( 0.15% w/v ).It seemed to help last time , I used the whole bottle ( 300ml ) from one week after infusion to end of third week as the ulcers seem to appear mid cycle for me .
Julia xx
Hi Julia, thanks I will definitely ask for some, as it’s really getting me down now, think this carbo/ caelyx is hard going 🙁 are you having it every 4 weeks , fingers crossed for good results for us all.
Maggie xx
Hi yes every four weeks , I find it slightly harder than the Carbo / Taxol but worth it if it does the job and I have kept my hair this time . Hopeful for good half way Scan which should be just before my next session at end of September. XxJulia
Hi Julia seems we are at the same stage, I had my 3rd lot last Tuesday. I too have been given Benzydamine but my mouth ulcers don't arrive till end of 3rd/ 4th week. Like Maggie my sessions have been delayed a week to ten days due to low Neutrophils. I have a midway CT scan on Thursday, a bit early given the delays but hoping it's doing a good job. Some people do lose some hair due to Caelyx, so I opted for the ice cap, my hair had come back nice & thick so I decided to try & keep it?!! Feeling more tired after this 3rd lot but it's only every 4 weeks so nice not constantly spending the day in Hospital. I'm under The Royal Cornwall Hospital & it's my 1st recurrence too. Was on a Niraparib trial (Prima) till the low 100mg dose I was on wasn't enough. It will be nice to be treatment free for a while around Xmas?! Good luck to you both, I will follow your journeys. Pauline xx
Hi , Having a sofa day today , port insertion on Friday followed by the chemo so a sore chest and nausea today , have found day 4 the hardest on this regime . Good luck with your scan , keep us updated x Julia X
Just a little update , when I saw oncologist this week he told me not to wait until the mouth ulcers appeared to use the mouthwash but use it before you know they will appear ( a mistake I was making) he also said warm water and salt was just as good so will try that this time , hope you are getting along ok , chemo yesterday so woke up to bright red face today ( happens every time) and an added headache which is a first but have read about from several of the girls xxb
Hi Julia I’m definitely going to start on the salt water etc now, had 5th lot of carbo/ calexy last Tuesday two weeks late due to neutrophils, been feeling really rough since then. How are you getting on now ?
Best wishes Maggie
Hi Maggie , day four today so usually the worst for tiredness and nausea so hopefully will feel a bit more normal tomorrow . Hope you feel more yourself soon , I do think this Caelyx builds up though , I certainly feel more yucky than I did with Taxol.keep in touch and let me know how the last one goes xx Julia xx
Check your toothpaste. If it contains sodium lauryl sulphate then bin it. Use only toothpaste without SLS and the bicarb mouthwash 1.4%. Should heal your mouth and keep you ulcer free. No hot food or drink, no spicy food and no crunchy food either. Good luck xxx
Hi kryssy, thanks for information will definitely get a different toothpaste as mine has SLS in it, also no spicy or crunchy food. I’ve alread given up hot drinks have to make do with tepid tea ☕️ or coffee !!
Hope you’re doing as well as possible mxx
I meant to add, no alcohol. Not for the time being anyway. I once had a glass of whisky "to cheer me up", hubby said. It was like drinking liquid fire. I've been using Zendium for some time now, having tried other more expensive brands. I've had a google and it is now available in the UK. See here - defactodentists.com/blog/re...
SLS is known to actually give you ulcers and all the other chemicals in toothpaste don't help either. The only use I give normal mouthwash is I keep a beaker of it by the sink and plop my toothbrush in it when finished and leave it there but rinse it thoroughly before using. Whilst you are suffering from the ulcers etc. I suggest you use the bicarb 1.4% solution at least three times a day and especially after eating anything. You should be able to get it on prescription easily. I'm given gallons of the stuff here as normal chemical anti-ulcer meds make me sick.
Hope you feel better soon. xxxxxx
Hi kryssy thanks re toothpaste advice I’ve ordered some now so hopefully will be a big help, no alcohol 🍷☹️. Excellent idea putting toothbrush in mouthwash solution.
If only their was a little booklet given to us all on chemotherapy with all the great advice, wouldn’t it be helpful.
Hope your feeling as well as possible mxx
That's an excellent idea and one which I've wished had been thought of long before all my side effects kicked in - especially the shingles. Having the jab to prevent shingles before I got it would have been wonderful as it definitely keeps me tired all the time. We could write a book!! Let us know how you get on with the new toothpaste as it will helps others. xxx
I had my daughter go to Neal’s Yard and get me Merc Sol homeopathic tablets. They are tiny sugar pills infused with something that fights the problem. That worked for me.
Best wishes,
Laura
Hi Maggie. Building on Krissy's advice of using a suitable toothpaste, I bought a super soft baby tooth brush to minimize antagonizing the sensitive tissue further.
Not sure whether these products are available in the UK or not, but here in Germany I also found Glandomed rinse and Oralife gel helful to keep ulcers down to a minimum. Hope it gets better soon. Xx. Maus
Hi Maus thank you
Will definitely find out if available in uk,
Hope your doing ok and your mouth is healed mxx
I’ve suffered terribly with ulcers. I use a mild toothpaste and rinse with corsodyl or difflam. Pineapple ice cubes are also good surprisingly. They were a tip from years back from the ladies on here
LA xx
Hi Mj and I sympathise!! I am just recovering from a week in hosp with mucositis. Horrid. I would only add to above good advice that Oral 7 products seem to be good- toothpaste and mouth moisturiser. I recently read some studies on honey as an oral coating. I have used honey and coconut oil on very sore lips and also pure woolfat. I have had no spicy food, alcohol, caffeine And stayed on soft foods but this has been for recovery.Difflam seems to be the only thing that helps pain as well a Viscoys Linocaine tho the Linocaine is very short acting. Lots of rinsing with bicarb.
Good luck and keep us posted. I plan on taking everyone’s advice for prevention !xx
Hi M oh dear that must of been horrendous, hope your feeling ok now, did they give you any antibiotics in hospital to treat it, or is it a bacteria?
Yes preventative measures are definitely the best way to go from now on, once it gets better. I will look into honey as a coating will taste nice at least 😊 take care mx
I would definitely recommend using a toothpaste without STS. I use one with Teatree in from a well known health supplements store which had prevented me from having other than the odd small mouth ulcer. If you do get one you should gargle with ano aspirin and rinse with a solution called Raspberry Mucilage which has been prescribed for me by RM hospital. I have just finished my 6th Carbo/Caelyx with very ltitle problem. Hope this helps as it's miserable having a sore mouth making it difficult to eat and drink.
I agree with sodium bicarbonate- it was prescribed here in France. It also works on sore throats.
Fingers crossed you get sorted soon
Joy 🤞🏻🤞🏻
Difflam and just letting half a teaspoon of Manuka honey dissolve slowly in the mouth seems to sort me!! ( Manuka v expensive but that’s another story.. cld be a load of rubbish but hey - I’ll try almost anything!) xxxx
Hi yes I think 🤔 we all get to a stage when we’ll try anything, and honey sounds rather a nice one, so will treat myself to some mx
I used mycostin its on prescription for mouth problems from carbo/taxol and also bmx mouthwash
Miracle mouthwash my dr prescribed.
Hi Maggie. Sorry u r suffering from this. I know how painful it is. I use salt water and bicarb as mouth rinse 6 to 8 times a day and always after eating anything. I also use Biotene Dry mouthwash. I discovered that if I put a small amount in my mouth and swill it around for 3 minutes every hour or so, it really helps, rather than larger amount in my mouth for just a minute. if it stings a bit, just add a bit of water.
The main think that really got rid of the ulcers was called ORABASE GEL. Script from Dr. May have a different name in UK but you can look it up on Google.
Yes. Sometimes Bonjela which is like mouth aspirin helps but Difflan is meant to do more rather than just block the pain. I have also taken 1 or 2 painkillers a day when it was bad.
Buying organic coconut oil, put it in microwave for 1 and half minutes (check temp of bowl and oil so u don't burn yr mouth) to make it liquid and swill it around for 10 to 20 minutes and spit out in bin, NOT sink so it doesn't block it. Kills most bacteria and soothes mouth.
Sorry for long post and these are all what worked for me and other suggestions also sound great. Hugs from Oz
Hi Tara ,that sounds like a good idea, just using a small amount more frequently, will give that a try. I tried bonjela at first but it didn’t help, thought best to ask all the ladies on this site as they’re the ones who know exactly what it’s like, even oncologist although sympathetic can not fully understand what it’s like for us all. The coconut oil sounds nice as well going to get some of that thanks for all the information.
Best wishes from England Maggie x
Raining here 🌧 great after all the 🌞
Hi Maggie
I've just finished 6 cycles of carbo/ caelyx. I really do sympathise with the sore mouth thing. It's horrible. I found eating anything spicy a real no, no. I had it bad mid cycles. Gelclaire helped. I was also prescribed fluconazole for mouth thrush, which after 5 days really helped to clear it up. Hope this help. Nic
Hi Maggie.I can not add to the good advice from our lovely friends but to give you some encouragement , I've had caelyx and yes ts side effects can be hard but manageable with good results , I found bicarbonate good I would mix a jug in the morning with boiled water and use it all day, keep it up even when the mouth feels better maybe every few days..
Take care Lorraine xx
Hi Lorraine. Yes I’m finding it harder than first line chemo, so think 🤔 it’s probably the caelyx, only two more to go so hoping can get mouth healed before next Tuesday, and neutrophils are ok usually have to wait another week before they’re over 1.1. Yes will definitely carry on with the bicarbonate mouth rinsing.
Best wishes Maggie x
xx. Maus
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