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
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.
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
Afternoon Ramade
Good to hear everything stable on the reduced dose of Everolimu. Like you I had my dose was reduced to 5mg after a month. I kept stable on that for 3 years. Hope you get the same success as me.
Buzzing
Enjoy trip abroad. Least weather has got to be better there.
Linda
Evening Ramade
Got changed to capecitabine in October. I found Everolimus easy once dose changed to 5mg. How long have u been on it upto now?
Hope u get as long as me fingers crossed.
Linda
Evening Lynne
Regarding mouth ulcers. Fortunately I did not suffer with them. I was on the reduced dose 5mg.
The main side effect was I was more tired than usual. I did continue to work 31 hours whilst on that treatment. I usually have loads of energy. If I had managed to stay stable on that treatment it would be 4 years this February. Suppose cant grumble really. Hopefully u will get as long. Fingers crossed.
Linda
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
ramade xx
Hi Ladies
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.
Morning Lynn
So sorry to hear that the treatment is not working any more. Hopefully u will get appointment through quickly for scan and you get your results soon.
Hope you and grandchildren enjoyed pantomime.
Try not to worry easier said than done though.
Linda
Hi Nicky
Hope you had a good holiday in Iceland bur sorry you have had progression in liver…
Have you had any indication what the next treatment will be?
Hope you are still feeling OK and not had any pains in your liver.
Linda
Hi Nicky
I really hope it all gets sorted soon. Aa I have said in the past your oncologist and team seem really on the ball. Not heard anything about RFA for liver met. I did ask last September when I was diagnosed with liver met if I could have surgery to remove it and I was informed it was not possible.
I would be really interested in the outcome for you. I have got fingers crossed for you that you don’t have to go on any more chemo as you have had such a lot.
Linda
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.