Hi, I hope you don't mind me asking but what mouthwash have you been prescribed? My mum is on the same combination as you but unfortunately her mouth erupted in several ulcers (some as big as 50pieces) which resulted in 3 trips to A & E. She has been told to come off it but we're are now worried as to what they'll suggest next as none of the treatments seem to be working. She was only on 5mg and were thinking 2.5mg could be an option but she'd need a mouthwash to combat the ulcers or at least make it manageable.
Thank you for reading my post, I'd be ever so grateful for any advice as we feel 😣
Hi Linda, Helen and Buzzing
thanks for responding. I am finding that I am still getting mouth ulcers, just as one seems to get better another one appears, and they are so sore. Still no date for the ct scan. ONC said to stay on EE combo until we get those results. I confess to feeling a bit fed up as it is causing my sore mouth and yet not working on the cancer.
However I spoke to a lady at the support group who told me that the EE combo didn’t work for her, so they put her on Capecitibane and that has kept her stable for 2 years.
Yes, it was a bit unexpected that the hormonal didn't work at least for a few months, having said that all other mets are stable so maybe its just my rogue liver met that is proving awkward - again! I have bombarded my oncology team with questions to discuss and consider before my next appointment and am having an MRI as part of those discussions. Last year I was in a similar position and kept writing on here what was going to happen ie surgery or RFA or a trial and none of it happened (I went onto eribulin) so until a decision is made I'll keep an open mind.
Iceland was fab and although it had snowed heavily, which caused lots of transport problems, it did make everywhere look wondeful - and bloomin' cold but we were prepared for that bit! I went with my youngest daughter (who's in her 20's) as my husband was off in completely the other direction for a work trip. Whilst we froze in -3C (plus wind chill) he was boiling in 32C.
Sorry this combo has stopped working for you. Although I didn't have the everolimus element I have been on Exemestane for the last 3 months after finishing eribulin and my recent CT scan has shown progression in my liver met. All bone mets are stable so we are waiting for an MRI to see of any other smaller activity in the liver before deciding on the next step. Meanwhile, like you, I continue on the tablets. Good luck
You must be feeling very disappointed with this news and it's awful having to wait for another scan and results. I am thinking of you keep strong in mind it is so stressful for you and your family. Like me you have a close family who are giving you lots of support. Enjoy the panto with your grandchildren they are the best distraction they help us find the child within us. Enjoy. x
Hello Buzzing. My ONc has ordered another scan, a CT scan I think. When I saw him yesterday he said that the E & E combo doesn’t seem to be working, I have to say that I wasn’t expecting that....it seems that
my TMs are still climbing quite significantly. He said that hopefully they should do the scan and he should get the report in time for my next appt in four weeks. Then he will decide what to do, maybe a change to a more aggressive chemo.
I have been having bowel/stomach issues for a while now and my GP referred me to a gastroenterologist who I see next week -he wants me to go ahead and see him. He doesn’t think these issues are related to the treatment, but may be related to the cancer - on first diagnosis I had shadows in the peritoneal area, they went away on lettozole but my last scan showed some activity in the area, he wants to see if there has been any more of that going on.
meanwhile I am to continue on the EE for another month.
Today I am going to the panto with my 5 grandchildren and my daughter and daughter in law. Itis a bit of a tradition for us, we have been every year since the eldest...now 18 ... was about 3. Then my daughter and 2 youngest are coming home for a sleepover, so that will keep me busy.
Hope the onc. is pleased with your progress when will you have a CT scan? Apparently I have no Tumour markets that show so my onc is relying on how I feel and CT scans until I get on a level that is stabilised.
Beautiful day today I intended to do some tidying up in the garden but started doing house work and now run out of energy. Definitely feel spring is in the air.
glad you had a good trip, I so envy you the sunshine -
glad to hear that you felt well whilst you were away.
I am seeing the ONC tomorrow.
I have one mouth ulcer left which is taking a while to heal, but I do not seem to have any others developing so hoping that I may have seen the last of them.
I am feeling a bit tired but hoping that improves, still not got much of an appetite. I will buy some Manuka Honey - I got some Vit C tablets today and multi vitamins,
I had a walk round the garden today and saw that some of the snowdrops are beginning to come out....hoping for an early spring..
Back from visiting my daughter husband and 2 year old grandson in Abu Dhabi so good to get some warm sunshine.
I was really well whilst away got better every day taste buds returned no mouth ulcers stopped using the mouth wash as I think it was killing my taste. I'm now having a teaspoon of Manuka Honey15+ with my breakfast every day after reading here that it is very good for your immune system.
Thanks for that Ramade. My Onc put me straight on to 5mg so I am hoping that is because my cancer is not very aggressive. I spoke to BCN about low dose and she said that could be the reason why, or he could be leaving scope to increase if necessary- hope he doesn’t have to. Your post is reassuring.
the last three of my ulcers are beginning to subside so I am hoping that they don’t reappear . I am seeing the onc again next Friday, but I expect it will be too soon to show any changes
hi all. I have been on this for 9 months, had to go down to5mg after 2 months because my face was all blown up and i was getting infections. i felt a failure, DON,T. 5 mg has kept me stable so far and ihave a lot of cancer in the soine and other bones , sorry spine (backspace isn't working). one thing i can tell you is do not use an electric toothbrush it gave me mouth ulcers whereas on a normal soft toothbrush i have no ulcers. hope this helps
Hello Lyndyloo. As Ramade said three years is very good, hope I manage that. I had to stop half way through my first month because the mouth ulcers were horrendous. Onc started me again but gave me lots of mouthwash treatments which are helping this time. He says that hopefully my body will get more tolerant and the ulcers will stop...did u have ulcers ?
Hello Ramade & Lyndylou it is good to hear from other ladies who have or have had this treatment.
My onc put me straight on to the 5mg dose of everolimus. He said that as my cancer was slow it should do the job. Funny how they all have different ways and opinions..
however I was on letrozole for almost five years with very few SEs so hopefully it is not very aggresive and the smaller dose will work.
Buzzing- Enjoy Abu Dhabi I envy you the sunshine..
Hello Buzz and Lyn, i have been on this combination for 9 months, had to go down to 5mg after 1 month due to side effects. since then i have done well, not suffering the exhaustion i did with letrozole. This week i was told 'stable disease' so i am safe for another 3 months. i buy rinses for the mouth alcers which are not too bad.
i have cancer in just about all my bones but it has not yet spread to other organs.
happy new Year xx
Happy New Year lynn good to hear from you again and glad to know your doing much better this time round did they reduce the dose, I'm on 10ml and seem to be well. No sore mouth now using weak solution of mouthwash twice a day. My taste buds are completely changed only like strong flavours and gone off White wine and gin. Booked to see my daughter living in Abu dhabi on Monday looking forward to a week of warm sunshine the weather is so depressing here always raining. Hope you continue keeping well and will write again soon.
Hello again Buzzing. Happy New Year!! How are you? Hope you managed to enjoy your golf - the weather here is rainy, murky and cold, not the best for being outdoors. I had a few plans for this week but I have postponed them all and I have decided to just potter around and rest at home.
i am just about to start my third week of the treatment. I do have a couple of mouth ulcers but they're not half as bad as the last ones were. I began with the mouthwashes as soon as they started to appear- I have bought an extra soft toothbrush as well which is helpful.
I wonder if you have had any changes to your sense of taste. I am finding that most things I eat are either very salty or very sweet....causing me to lose my appetite, and I have always been a good eater.
I am seeing the Onc again on the 19th January and I do believe now that I will be able to complete the full four weeks of treatment this time.
Hope that your scan goes okay on the 24th...I find the waiting for results is worse than the actual procedure.
Good morning Lynnq
That was a bad start for you so hope all goes well this time. My onc. told me if I get bad side effects and get ill to stop taking the everolimus until well again using the softly softly approach as she wants me to stay on this for as long as possible. Just try to carry on as normal now I'm getting use to the new diagnosis.
Beautiful day here frost and sunny so I'm out to play golf. I hope you have a good day.
I will keep in touch and lets hope we both do well on this.
Hello Buzzing. Hope you had a good Christmas as well.
I am also on this combination. I first started it about five weeks ago but I got dreadful mouth ulcers on my tongue and also a really bad case of D& V. I lost about half a stone in a week due to stomach and mouth being too sore to eat. The chemo nurses told me to stop using it.
However when I saw onc he wanted me to try again, he reckons that I had some kind of virus which didn’t help and meant that my immune system was low. he has also given me a couple of mouthwashes and a soluble steroid to use as a mouthwash should things get bad again. I am just about to finish my first week of this second try and so far so good. Pleased to hear that you are doing okay.
I was on LETROZOLE for almost five years since diagnosis. Would be interested to keep in touch to see how we get on.
hope you get your holiday in the sun.
Hope you all had a good Christmas
Just to say I am now into my third week on Everlolimus and doing okay with very little side effects. Had a few mouth ulcers and sore tongue in second week but was able to deal with it and other than a few raised blister like spots on my face which are no bother and itching a little. So far so good so hopefully will be good for the long run having Ct 24th January, may get a holiday in the sun in the meantime.
Happy New Year. xx