I'm on Carboplatin and caeleyx, I've had five of six cycles so far, after the fourth and fifth I've had a very bad mouth ,sore and ulcers, making me so restricted and miserable that I'm thinking of not having the sixth , I've got the mouthwash prescribed but it hasn't made much difference ,last time I phoned the chemo suite for advice but they only advised what I was already doing ,my husband has suggested a reduced dose rather than stop my last treatment, has anyone had the same problem that was helped by a reduced dose ,I know I've only one more to go but it's hard to eat or talk and I'm getting so low .
Cheryl x
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Cheryl, my mouth sores began after my third infusion of carbo Caelyx. I followed mouthwash instructions to no avail. However, I began taking 200 mg of Vitamin E and 10,000 units of Vitamin A daily. My sores healed after four days. I stopped the vitamins and the sores have not returned. Perhaps this might help you. I hope so. Sashay
Hi Cheryl , so sorry you have such a sore mouth . It is very depressing . I had mouth ulcers after my first cycle and managed to treat them successfully. Can I suggest you get tubes of Iglu ( I ordered from Amazon) it is a very thick paste with an anaesthetic called lignocaine . I rinsed first with Difflam . Then covered the ulcers with this paste . It isn’t easy ! I used my little finger and pushed the paste onto the ulcers around my mouth . It does feel a bit strange and gunky but the paste protects the ulcers and gives them time to heal. I also take a multivitamin , plus extra vitamin D tablets and vitamin B12,s. The paste can last s few hours or a day . As soon as you feel the paste has gone, stick some more on. Can I suggest trying to eat just warm soups , scrambled eggs , and other soft foods to give your body some nutrients. I could only drink lukewarm tea! My oncologist then prescribed Caphsol which comes as 2 sachets to mix together and use as a mouthwash . I now use that plus Difflam plus iglu and have managed without a sore mouth . I hope these suggestions work for you as we are all just trying to deal with horrible side effects to get to the 6th and final chemo. God luck and I hope in a few days your mouth has improved. X
Thank you for telling me about Iglu, I've not heard of that , I'll check it out on Amazon .As for food I'm having lots of liquidized veg soup , yoghurts and mashed banana , husband fetched vitamin s this afternoon ,so ready to start them. Cheryl x
So sorry you’ve got such a sore mouth my mouth was raw with ulcers when l was on chemo. I found Corsodyl eventually worked for me. But it is horrible, and like you l like my food. Hope you get some relief very soon. Sending love Sheila Fxxx
Good luck ,l know its horrible l gave it 2 minutes if l could in the mouth with the mouthwash its so sore isn't it. Hope this works for you. Take care and thank goodness your chemo nearly finished. Sending love & hugs too everyone think we all need it at time's SheilaFxxx
Thank you Sheila ,I'm more than ready for a break , I'm the lowest I've ever been physically and mentally ,going to have counciling soon . Sending love and hugs back ,Cheryl xx
I was given Difflam at the chemo suite , I've used both bottles and about to start a third that my husband fetched from Boots chemist , my mouth isn't any better. Going to try the vitamins that previous relpy suggested ,I'm so miserable and in pain , I'll give anything a go .Cheryl x
I have some of that in the cupboard ,I just presumed the one chemo nurse gave me was better, I will try that for the rest of today ,reached the point when I'd try anything . Thank you .Cheryl x
Hi Cheryl I’ve had the same issue on all my treatments and at times it was very difficult to eat anything. On my 4th at the moment!!. My oncologist proscribed mouthwash and thenSomeone on her I think suggested Anbesol. Both helped a little but then when they got worse she suggested a hydrocortisone tablet called Buccal that you place on the ulcer((s) moving it around if you have several. They worked a treat but when I moved to a larger teaching hospital team my new oncologist there hadn’t heard of it. However she called pharmacy who confirmed it was a med they had available- I was so relieved. Maybe worth asking about?
It could just help get you through that last treatment.
I’ve had it on prescription only. It says on nhs website available to buy , but oncewhen I was away I ordered and paid for some at a branch of Boots. When I went to collect it the pharmacist refused to let me have it! Maybe your CNS can get a prescription for you or your GP even? Good luck. xx
Like others I have had difflam which was mild but did help.It’s important that you discuss this with your team, it’s such a depressing side effect…I found it made me more miserable than anything else. You could tell them what you’ve told us…that you might not carry on. Remind them that they have a duty of care for your well-being as well as your chemo.
Yes you're quite right ,it's made me so miserable , I will talk to the team. first.
One minute I'm thinking I'll ask for a reduction ,the next I'm saying I can do one more , might depend on how long this lasts , thanks for the advice .
Thank you very much for your message. I am so sorry to hear how sore your mouth is at the moment and how low it is making you feel. I can see that you have already had a number of helpful and supportive responses from members of the forum.
We would also encourage you to speak with your clinical team so that they can provide you with advice on how best to manage the pain that you are experiencing. It is always advisable to contact them before trying any supplements or treatments to ensure that they are suitable for your own individual situation. I will also share a link to some information from Macmillan Cancer Support about mouth problems when you are having treatment for cancer: macmillan.org.uk/cancer-inf... . I hope that you find that helpful.
Please don’t hesitate to get in touch if we can help with any further information. I noticed that you mentioned that phone calls are difficult at the moment, so I wanted to let you know that you can contact us by sending us a private message on the forum, by emailing support@ovacome.org.uk or by sending us an instant chat message through our website. To do this you will need to go to ovacome.org.uk, click on the pink ‘Can we help you’ box on the bottom right hand corner and then type us a message.
Hi can a family member call with you in the background, that's what we've done for my mum when the effort of speaking to cancer team has felt too much, maybe then they also understand how difficult it is making it for you. Take care, Gwen
Hi Cheryl, sorry to read you are in so much discomfort. This might help, but if it doesn't, it might at least bring a smile to your face. I have a stoma & it used to get very sore around it, then I found an ointment called "Orabase" by Convatec which I use all the time & I find it brilliant. I am sure at this stage your saying to yourself "what is she talking about it's my mouth that's sore" but you will be glad to hear I haven't lost the plot yet 🤣 because "Orabase" is actually for mouth ulcers & sores. You dab it on the ulcers especially after having food. It sticks to the ulcer preventing irritation from food & drink & eases the discomfort. It might be worth a try but if your not sure about using it you could ask them in the pharmacy. Good luck & I hope you get something that works so you can have your last treatment Xx
Thank you , I haven't heard of it ,but I'm going into town tomorrow morning so I'll ask the pharmacist ,pleased to hear you haven't lost the plot ,I have 😂 .Cheryl x
Hi Cheryl. I can’t add advice but would agree that you should ask for a dose reduction. I myself just used warm slat water to rinse my mouth frequently and it helped but I don’t think mine were quite as severe as yours. I hope some of the suggestions you’ve gotten help. Xx
I think I’ve just seen you are in Lincolnshire on another post? If so, me too, but just starting out on this journey awaiting my op and depending on outcome possibly chemotherapy. Am quite anxious and trying to relax ready for the pre op thurs. It is a scary time esp with covid and I was on the two week wait due to a very high ca125,
I am in Lincolnshire ,Spalding , I'm sorry you've found yourself on this journey ,it is hard ,but I'm still here three years later . Are you have the full hysterectomy? Surgery is scary but you'll come through it fine ,where are you having your op .Cheryl x
Hi, fendweller, I am near Market Rasen. It is the full hysterectomy and salpingo -oof and lymph dissection. They won’t know if it is C until removed. I’ll see how the pre op goes and get back in touch with you, if that is okay.
Yes let me know how you do ,I was terrified about the op ,but it wasn't half as bad as I expected ,make sure you jog down all the questions you have .Cheryl x
Thanks, Cheryl. I’ve had it explained twice to me, I’m just scared …. But will jot down some questions for the anaesthetist and if I need anything for hospital, in particular.
Loose waist trousers or dress to travel home and a pillow or cushion to put under your seat belt ,I just took nighties ,didn't get dressed in hospital ,wet wipes,juice ,reading material , hopefully you won't be in long . Xx
Pillow an excellent idea, will pick a favourite one and put it in the boot of my car ready in case hubby forgets. I bought nighties after the scans, as a distraction and as I love shopping …. And a lovely denim dress - loose yet fashionable, and bought some maternity tracksuit bottoms but not tried them on as they don’t look very nice …. Having just lost two stones at SW, I think there will be some old clothes in the wardrobe.
Goodness two stone loss ,well done , I've given up , I always put on weight when I have chemo ,then lose a bit when I've finished , sounds like you've got it covered .Cheryl x
Hi I am so sorry you are suffering I had severe mouth ulcers after my second Carbo Taxol and have used Biotene mouthwash multiple times every day since with no recurrence after subsequent chemos. The Biotene stung my mouth it was so sore at the time. Just to encourage you that each session is not necessarily the same with ulcers. Hope your clinical team is able to help you x
Thank you , I haven't heard of Biotene ,worth a try , I didn't get any mouth problems with carbo and taxol ,but with carbo and caeleyx I've had a really bad mouth after cycles four and five , I've decided to ask for a reduction for my sixth ,my ca125 was down to 18 last check so I'll go with that .Cheryl x
Hi Cheryl , so sorry you have such a sore mouth . It is very depressing . I had mouth ulcers after my first cycle and managed to treat them successfully. Can I suggest you get tubes of Iglu ( I ordered from Amazon) it is a very thick paste with an anaesthetic called lignocaine . I rinsed first with Difflam . Then covered the ulcers with this paste . It isn’t easy ! I used my little finger and pushed the paste onto the ulcers around my mouth . It does feel a bit strange and gunky but the paste protects the ulcers and gives them time to heal. You can also use orabase . I also take a multivitamin , plus extra vitamin D tablets and vitamin B12,s. The paste can last s few hours or a day . As soon as you feel the paste has gone, stick some more on. Can I suggest trying to eat just warm soups , scrambled eggs , and other soft foods to give your body some nutrients. I could only drink lukewarm tea! My oncologist then prescribed Caphosol which comes as 2 sachets to mix together and use as a mouthwash . I now use that plus Difflam plus iglu and have managed without a sore mouth . I hope these suggestions work for you as we are all just trying to deal with horrible side effects to get to the 6th and final chemo. God luck and I hope in a few days your mouth has improved. X
Low dose is the way to go. I had only one regular high dose treatment and immediately got mouth sores, peripheral neuropathy, fast heart beat, nerve and bone pain. I stopped after that one dose and didn’t start chemo again for 2 years when I found an oncologist who would give me low dose, although it takes more treatments. I had no side effects whatsoever. My Deacon at church who is also an oncology nurse told me to try the essential oil of oregano. Tastes yucky, but I put a drop on my tongue and swished it around. It cleared up quickly.
Hi Cheryl. I have just had my 5th carbo/caelyx/Avastin. Almost didn't go ahead because of horrific side effects but glad I've soldiered on. We are all strong, amazing, carrier women. Don't ever doubt it. Just keep your eyes on the finishing line.In regards to the mouth problems, my oncologist treated me with Nilstat for thrush. My problem was with my tongue & esophagus so that I also had a lot of trouble drinking & eating. Felt like swallowing Razer blades. The Nilstat has worked for me & my oncology nurse has suggested I stay on it until the end of my treatment. I don't know if this helps but just make sure that it doesn't develop into thrush. I am in Australia so don't know if Nilstat is called something else in UK. Stay strong. This will pass. Sending big hugs & Love 🤗💜
Hi again , I’m just checking how you are getting in with the Iglu ? It took 6-7 days to work for me . It does feel strange and gloopy but I kept putting it on even in the night and eventually it worked . Good luck x
Hi , it's helped a lot ,most ulcers cleared ,just a spot in an awkward place on the side of my tongue but right at the back , it's almost impossible to get to ,but I keep trying ,so pleased I tried it , thank you . Chemo nurse has e mailed my oncologist to request a reduced dose ,so happy my last one won't be so bad .Cheryl x
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