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Exmestatane and Everolimus

22 REPLIES 22
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Re: Exmestatane and Everolimus

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

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Re: Exmestatane and Everolimus

Hi Ellen

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. 

Linda 

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Re: Exmestatane and Everolimus

Hi Anne

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.

ellenb

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Re: Exmestatane and Everolimus

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 .

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Re: Exmestatane and Everolimus

I have bone mets but am on capecitabine I wonder why you are on these drugs and not cape ? 

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Re: Exmestatane and Everolimus

I will keep my fingers crossed for you 

In the meantime have a happy and peaceful Christmas time. 

And enjoy. 

Kind Regards. 

Gina x

 

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Re: Exmestatane and Everolimus

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

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Re: Exmestatane and Everolimus

Hi Ann. 

How are you doing with the Ribociclib 

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Re: Exmestatane and Everolimus

Thanks Gina

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Re: Exmestatane and Everolimus

Hi Ann. 

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. 

Gina 

 

 

 

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Re: Exmestatane and Everolimus

Hi Gina 

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?

thanks Anne

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Re: Exmestatane and Everolimus

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. 

 

X

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Re: Exmestatane and Everolimus

Hi ladies. 

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

Keep well. 

Gina xx

 

 

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Re: Exmestatane and Everolimus

Thanks. 

I have just read the following article

https://www.ascopost.com/issues/october-25-2016/dexamethasone-mouth-rinse-should-be-routine-part-of-...

 

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. 

X

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Re: Exmestatane and Everolimus

Hi WMJ. 

Yes I have that strange tooth sensation and dry mouth. 

But manageable. 

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. 

Kind regards

Gina 

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Re: Exmestatane and Everolimus

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!! 😬👍

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Re: Exmestatane and Everolimus

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. 

Bowels ok!!.

Don't want yo say too much too soon. 

Hope you ladies are managing symptoms. 

Take care. 

Gina x

 

 

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Re: Exmestatane and Everolimus

Will do 

Good luck 

G🍀

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Re: Exmestatane and Everolimus

Hi G, I don’t start my treatment until Tuesday. Will let you know how it goes. X

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Re: Exmestatane and Everolimus

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. 

G xx

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Re: Exmestatane and Everolimus

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. 

Gina 

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Re: Exmestatane and Everolimus

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

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Exmestatane and Everolimus

Hello all,

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!

thanks,

Anne