Hi Lindyloo have just started treatment on exemestane and Everolimus , did it give promising results .Was on palbacilib for 2 years , which kept it stable for 2 years .Worried about side effects on these new drugs , but hopefully won’t be too bad .Many Thanks x
Think this thread has now got missed up as it was set up for people on Everolimus and extermestane. I was on this treatment for 3 years 8 months. Like you I had a dose reduction after 3 months to 5mg Everolimus. Had no problem after that worked 31 hours a week. Hope it is going ok.
I'm just curious that you refer to treatment cycles on this drug combo. I am taking mine continuously. Have had to reduce the dose of Everolimus to 5mg due to mouth soreness. Am very careful with mouth care. Use a super soft toothbrush and use a fluoride based childrens toothpaste as it is milder in taste.
Did you use the green mouthwash for sores ? It has an anaesthetic in it and makes your mouth numb , very odd sensation especially when you dont realise it’s got that in it .
I will keep my fingers crossed for you
In the meantime have a happy and peaceful Christmas time.
Pretty good thanks Gina. I’m on cycle 2 now! I caught a cold at end of cycle 1 that took a while to shift. The Fulvestrant injections are bearable too. I’ve had 3 of them. I’m just worried the drugs won’t work. I find out on 5th February after cycle 3. Fingers crossed. It obviously worked for you as you were on it for over a year?
best wishes Anne x
I was on Ribociclib for 16months.
I didn't have fulvestrant but Letrozole.
Also I had my ovaries out.
But for me Ribociclib was do-able. They will do regular ECGs for a few weeks as it an cause arrhythmias.
They will also keep an eye on your neutrophils.
Keep well over Xmas and enjoy.
they decided to put me on Ribocyclib and Fulvestrant instead! I’ve done one cycle and so far so good. How long did it work for you?
Hi Gina, Started E&E on the 20th November.
I too have skin blemishes, two on my neck are particularly unsightly. They appeared over the weekend. I did have some soreness to my mouth but it settled down quickly after gargling etc. I am not sleeping too well, never do to be honest, as a result do feel a little more tired. However less aches and pains than on the letrozole, which is a bonus.
I have been 3 weeks taking E/E.
Dr started me on 5mg Everolimus.
I have had sore gums and tongue. But sodium bicarbonate is usually pretty good. Although I have had some blemishes on skin.
Gastrowise I have been ok.
But I do the fast overnight, I feel this rests my gut.
I do get tired with early morning dizziness but that subsides.
Tai. CHi is good to bring some sort of calm.
Breast ultrasound was good, although I have bony mets (which like to remind me they are still present at times).
Magnesium (Epsom salts are really relaxing.).
I hope you are all finding ways to alleviate side effects and find order and happiness in your lives
I have just read the following article
I have been prescribed this mouth wash and was keeping it for when absolutely necessary as I tend to use only organic and paraben free things. Laughable now when you think of the drugs we are on. However that’s been thrown out now as not risking a very sore mouth. Hoping it doesn’t get much worse.
keep me informed on on your progress.
Yes I have that strange tooth sensation and dry mouth.
I was on Ribociclib and was really lucky with this drug for just under eighteen months, so sorry to say good bye to it.
I hope if stays manageable for you over Xmas. K
Use Sodium bicarbonate mouthwashes after washing teeth.
Hi, I have a sore mouth, not drastic but sore non the less 🤨 and only on day 7. I never had a sore mouth through chemo or palbociclib, which I took for 18 months, so ever so slightly p’d off by that. I am tired but that’s partly because I am not sleeping as well as I was. Think I was spoilt by a full month without medication, prior to starting my new regime and having the biopsy. when drug free I was free of aches and pains and managed to have some decent nights of sleep.
I also had had a strange sensation in my teeth 2 days ago. the best way I can describe it is when you have anaesthetic from a filling and it starts to wear off and you have limited sensation in your mouth. That was weird but only lasted 1 day, guessing that is a reaction Denosumab. started to think OMG my teeth are going to start falling out. However next day was fine and still have all my gnashes!! 😬👍
How is it going with the E/E combo.
I am OK. Although Dr was kind and gave me 5mg.
Mouth/gums are dry with an acrid taste. Always have lemony water with me.
Don't want yo say too much too soon.
Hope you ladies are managing symptoms.
Hi Ann 52 and WMJ.
How are you getting on with the E/E.
I will happily start the Exemetasene tomorrow but need to speak with Dr about the other one.
Best of Luck.
I too am about to start this combination after a honeymoon period of being on Ribociclib and Letrozole.
Pissed off more than anything.
So is my Dr.
I have bony mets in lumber region.
Are they do able.
Hi Anne52, I am about to start these drugs. I searched them and there is a feed about them and the side effects. hope you are coping with them.
Hugs from me to you xx
I’ve just found out I have new mets in my liver and will soon start on Exmestatane and Everolimus. I’ve had an ablation in 2015 and a resection in 2018.
I would love to hear from anyone who has had success with this treatment. I’m in need of some good news!