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exemestane and everolimus

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Re: exemestane and everolimus

Dear FF sorry to know that you have such severe joint pain. This combo is good in that way. I didn't have any joint pains. I hope once you start everolimus your pain will decrease . I mainly have problems with digestion, nausea. Side effects differ with each individual. So it may be you will have no reaction at all. With that hope and hugs for you and all the brave and lovely friends srilata
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Re: exemestane and everolimus

Afternoon funnyface I have been fortunate up till now no mouth ulcers but you never know. Thanks for the advice just in case I start to get them. Hope you have the same success with the combo. I have now retired but I did work 31 hours whilst I was on the treatment. I am now 64 and I was 57 when diagnosed with breast cancer and bone mets at same time.Hard to believe it is hard to believe it is nearly 8 years. Sending hugs to everyone. Linda

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Re: exemestane and everolimus

Thank you Srilata! I'm making a helpful hint list! I believe benadryl might be one of the active ingredients in magic mouth wash.  I know we each get different reactions, but it's nice to know  ahead of time how to try and combat them!  Srilata, Did you have joint pain from these drugs? I have been on letrozole/palbociclib. The letrozole caused severe pain in my knees. I ended up on crutches at one point. My one knee was worse than the other. The pain did decrease over sometime but still very bad. The palbociclib caused muscle weakness in mg legs. I'm hoping for improvement in my pain level and weakness after I'm off this combo. Hope you are feeling fairly well! FF

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Re: exemestane and everolimus

 
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Re: exemestane and everolimus

Benadryl cough syrup diluted with water as mouth wash is very effective for mouth sore caused by everolimus. My onc suggested it and i did not have any problem with everolimus . But it causes loss of appetite and fatigue.
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Re: exemestane and everolimus

Thanks Ramade. Good luck. What day do you start? 

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Re: exemestane and everolimus

Thanks Lyndyloo, 3 years already, that really starts to give me hope because I have been really wavering lately and have to keep getting cross with myself.i really hope you carry on with the success so far with this.

ff, do let me know how you get on and I will also report back. Hugs to all

ramade

 

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Re: exemestane and everolimus

Thank you Lyndyloo! I start the combo May 8th. I don't know why but usually I read over the SE, make a mental note to them and then forget about them. This time I read the side effects and I'm letting them bother me. I see you said you didn't have any troubles with mouth ulcers up to now! Dies this mean you are having a problem? You can get a prescription for magic mouth wash. You just swish it around and it numbed you up. You also can use baby oragel. I don't know if you noticed that I read to put the pill in a mini marshmallow or whip cream then swallow. Good luck! FF

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Re: exemestane and everolimus

Morning Ramade I have been on this combo for just over 3 years.and I have found it very torable. At the beginning I was started on 10 mg which I found I had alot of side effects acne spots ichy skin and very tired all the time. I got switched to 5mg after a couple of months and it has been much easier. Fortunately I have not suffered mouth ulcers up to now. I hope the information helps you. Feel free to ask me further information. Happy Easter to you all.

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Re: exemestane and everolimus

 Ramade, It was the evermolimus that can pass through the skin when handling it and that is the one they are putting in marshmallows. It makes sense why it causes mouth sores then. FF

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Re: exemestane and everolimus

Ramade, I don't remember which of the two drugs, but one of them said pregnant woman should not handle them because it can be absorbed through the skin. I'm now wondering if that is the one that causes mouth ulcers.  I will have to try and find all this information again. Might just be easier to put each of them in a marshmallow. Thanks for the good wishes. Please stay in contact.  Good luck starting this!

 

Marie, Thanks for being our information center. Good luck with your scans. I hope you get a long ride with these drugs if they aren't too bad for you.

 

Hugs to both of you! FF

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Re: exemestane and everolimus

Ff, wow thanks for that, I'll go out and buy some marshmallows, that sort of suggests it might be the contact with the pill on the tongue that causes ulcers, I know it happens if ever I eat a polo mint.best of luck onthe 8th. Happy anniversary

ramade xx

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Re: exemestane and everolimus

Oh thankyou Marie, I suddenly feel my shoulders dropping as the stress I've been holding lessens. I do hope you have a clear scan this week, thinking of you.

hugs, ramade

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Re: exemestane and everolimus

Hi FF,

 

No hair loss,  xxxxxx M

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Re: exemestane and everolimus

Ramade, I'm sorry I can't help you with any experience with this combo. I'm also starting it, but not til May 8th. I'm going away for my 35th wedding anniversary and didn't want to start to I got back. My oncologist didn't say much about it, so will ask more on my visit on the 8th. I did read on another forum to put the pills in small marshmallows or whip cream to swallow. They say you don't get mouth ulcers this way! That is all I know. 

 

Marie, I'm sure glad this combo hasn't hit you as bad as your doctor said! How has your hair held up? FF

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Re: exemestane and everolimus

Hi Ramade,

I have been on this combo since August. It is working so far have a scan this week so don't want to tempt fate.

 

As to being toxic , a nurse put the fear of god in me how awful this med would be.I would   have so many mouth ulcers I would be eating through a straw, i wouldn't be able to work , doom and gloom  all round.

 

Well, no real mouth ulcers to speak of, still working . I have lost weight , but seem to have reached a point now.Nails a little brittle , but ok. Have been abroad twice with no probs.

 

We all react differently . I think they tell us the worse scenario. It has honestly been fine , I just want it to keep working .

 

Good luck

 

M xxx

 

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exemestane and everolimus

Hello brave ladies, has anyone had this mix, my doctor has already told me everolimus is very toxic and I start it next week. Does anyone have experience of this drug.

thanks and hugs to all

ramade