Hi
Apologies for what may be a long post. I’m hoping someone may be able to give me some suggestions.
Background
I’m posting on behalf of my Mum, she was diagnosed with Inflammatory breast cancer back in June and is on her second cycle of EC day 8 (chemo before MX and rads). She has developed what we can only presume is oral and esophageal mucositis and thrush, we have got absolutely nowhere with her GP, the cancer hospital or the BCN.
She phoned the hospital on Wednesday and told them her throat and esophagus felt very painful, cracked, blistered and that it hurt to swallow cough and sneeze (temps normal), she has also had problems with water rising back up. They referred to the oncologist who said he was happy it was the chemo causing it so didn’t want to see her and to go to her GP. So she phoned the GP who wanted to treat it as thrush and prescribed Fluconazole.
Mum got worse yesterday and was in an awful lot of pain so we went the GP to see what pain relief he could prescribe her and to also have a look and confirm the diagnosis. He said he couldn’t see anything and said the problem must be further down (I’ve had a look in her mouth several times and there are blister type or thrush type lesions on the roof of her mouth, I can not understand why he couldn’t see anything). On the basis of this he said he couldn’t prescribe anything and that she needs to speak to the oncologist, who had already told her to see the GP.
We got back after 5pm yesterday and I called the hospital and they advised me that all the doctors have gone home and to take her to A & E to get painkillers, Mum was exhausted and the last place she wanted to go was A & E.
This is the second time Mum has needed something to help her with the side effects and the hospital have said see the GP and the GP has said see the hospital (this was over heartburn), and Mum has suffered more as a consequence.
Sorry about the long background, we are just very frustrated and Mum feels she can no longer continue with chemo (she wishes she never started) because of all of this and being stuck in the middle, she is at the end of her tether.
She is on soft foods only, paracetamol and codeine are not working very well, and she can not take anti inflammatories due to allergies. I have got her some biotene gel which has helped a bit with her mouth but not with her throat or esophagus. I was just wondering if anyone had any other tips we can try.
Thankyou for reading
EJ x
hi
sorry to hear about your mum, I had difflam mouthwash when my throat was bad with thrush, I had fluconazole but it took a few days to kick in. the difflam is prescription only, but good to gargle with, maybe the hospital could get some or locum weekend doctor. it did take a few days to calm down.
hope she feels better soon.
angie xx
Hello EJ,
Sorry to hear your mum is going through such a hard time. Even worse, that she is not getting support to manage the SE’'s.
I don’t know if I can help much practically, but I wanted to share my experience just in case. I’ve had chemo twice, and the second time the oral thrush was just awful. It did take a couple of cycles to get this under control, and I had an antispectic mouth-wash and took a daily dose of fluconazole which I started the day of my chemo and then carried on with for 10 days. I can’t remember the dose. It did not make me symptom-free but it did make it manageable. I also found that this particular SE peaked in intensity and would then improve slowly just when I felt I could not bear it any more.
I also ate a very limited diet. I have noticed diet and drinks that help is very indvidual, but soft oods with mild sauce - mashed potato, gravy, jelly, ice-cream. I found drinking very hard but it makes a huge difference if you can keep hydrated- I used to make elderflower and sparkling water. Boiled sweets, but this involved experimenting as it was so painful but basically anything that keeps the mouth moist.
It must be really hard to watch your mum go through this. The other thng to hang on to is that it will pass.
I would recommend the BCC Helpline who I am sure would be able to help.
Best wishes, Rattles xx
To add, do give helpline a call. More importantly, the MDT and BCN need to know how unsupported you and poor mum have been. In my opinion MDT should manage side effects not GP. Your mum should not have been left to suffer like that. Next consultation, make sure someone goes to let them know what happened. I personally think GP visits should be kept to minimum. We can’t completely avoid contact with ill people, but sure as eggs is eggs, you’re gonna find ill people at the surgery!!!
Hi fluconazole is good as it acts systemically but nystatin is an oral med that coats the mouth worth a try . Can you contact the on call gp, your poor mum sounds like someone needs to pull their socks up!!! Hope,you,get it sortedx
EJ please get your mum to gargle with salt water 3 times a day as well. It really helped me. To ease your mums worries - the sore throat is quite normal while having chemo. It is one of the side effects.
Thankyou so much for taking the time to reply and for all your advice and experiences.
Just a quick update, Mum called the hospital again hoping to get help, she was told by the nurse that she would get the oncologist to give her a call back and sort something out - but no one called back. She started feeling sick earlier too and food keeps trying to come back up, she has had to take some of the anti sickness which have made her feel totally out of it which she hates.
Angie - I looked into the Difflam, and sainsburys pharmacy had it in, so she is using that now as well, I know it won’t be like the prescription one but at least it’s a start.
Rattles - Thankyou for the tips will try a few of the ones we haven’t tried yet, we’ve got lots of soft foods in and they seem to be going down ok, which is something, apart from when they try to reappear!
Boxofrogs - I will be with her at the next consultation if she goes, which is looking very doubtful now. Totally agree with you that it should be one that team deals with all of it.
Lois - Unfortuntely Mum is allergic to Nystatin, which is such as shame as I have read great things about it.
Caroline - She did attempt this but it dried it out even more and her esophagus can’t seem to take the vibrations even from the mouth wash, so she is swishing it around which is helping a bit.
Just hoping the gel, mouthwash and fluconazole really start to take effect soon, hate seeing her suffering so much.
My best wises to you all hope you are all are feeling well and have minimal SE’s xxx
In addition to the valuable support and information you have found here, our helpliners are on hand 9-5 weekdays and 10-2 Saturdays with emotional and practical support to help you both through this difficult time. Please feel free to call 0808 800 6000
Going through this at the moment. I am just coping. I am taking oral Fluconazole. I swish my mouth out with Difflam three times a day. I am on Omeperazole for the oeophageal soreness too. I also take Gaviscon. I can only drink a “tea” of fresh sliced ginger infused with hot water. I cannot drink ANYTHING ELSE!!! The fungus is all over inside and out and “appeared” virtually overnight. Thankfully my ONC is great and I have had my meds changed virtually every time I attend for my picc dressing and flush. I have been on the anti fungal for 5 days/5days to go and and I am improving every day. The Oncology day unit is amazing and the nurses are also fantastic. I hope that your Mum will feel better soon. Does your Mum not have an emergency number to call in emergencies like this???
