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Exemestane/everolimus

10 REPLIES 10
Horace19
Member

Re: Exemestane/everolimus

Hi funnyface,

Good to meet you here on the forum.😊

I had my primary diagnosis in 2010 and my secondary diagnosis exactly a year today, so yes this 'sneaky' disease seems to have been dormant a while. My spread is bone, 'a pepper pot' effect its how its been described to me, as if its been shaken all over me, so I have mets in my skull, ribs, sternum, spine and pelvis. Most problamitic is the spinal/pelvic ones. I have a couple of lesions in my liver which they are 'keeping an eye on'..probably not mets but that is not 100% so they obviously monitor them. 

Ireally hope you get positive news from your scan this week. Everything crossed.

Horace x

funnyface
Member

Re: Exemestane/everolimus

Welcome Horace,

 

In May will be 2 years on E & E for me. I've not had many problems with it. Mostly tiredness, but then again I've had some type of treatment for 13 1/2 years straight! I guess my body is allowed to be tired after all the medications plus I'm not getting any younger. I work PT too. That's enough for me. I've had pneumonitis twice. The breathlessness is scary!! I'm due for my scan next week. Luckily for me I will have the scan on Tues and my oncologist appt is Fri so she will have the results. Only a couple of days of scanxiety.

 

May I ask where are your mets? Mine are my lungs. How long did you have between primary and secondary? I had 10 years. It amazes me how long this can sit dormat somewhere then start up again. Sneaky! 

 

Time to head out the door to work. Take care! FF

Horace19
Member

Re: Exemestane/everolimus

Hi there, 

I havr been on E/E for 10months and was told to take them togethet bu oncologist and specialist nurse. The booklet also states that ( was given it when I started my treatment). I had mouth ulcers initially but they settled after a few months. Just after Christmas my CT showed I had pneumonitis  and I had been a little breathless but as I was coping oncologist got me to 'ride it out' and it serms to be settling, next CT on 7 May so fingers crossed. I do feel very fatigued on the treatment but have been able to return to wirk part time. I hope you get settled on this and it works for you. I have had this from my srcondary diagnosis last April so its tge first treatment I have experienced. All the best. 😊

funnyface
Member

Re: Exemestane/everolimus

I will be on this combo 2 years in May. I take them together but was never told too. I'm on the full dose and have had an ulcer now and then. Other than that, I've had no problems until my last visit in Feb. My kidney function wasn't the best and we are monitoring it. They did retest and it had improved some. They think I might have been dehydrated. Oncologist also said maybe my diabetes is doing it.  I don't think it's the diabetes bc I have no other problems from it. I am very controlled even though we had to add more meds. The evermolimus increased my blood glucosr. I'm doing what I can to improve my kidney function and get testing again the end of April. If I don't like the results I'm going to see a nephroligist. Have a good day. FF

LYNDYLOO
Member

Re: Exemestane/everolimus

Hi all

 

I took this combo for 3 years 8 months. Originally on 10mg Everolimus and 25mg exemestane got reduced after 3 month to 5mg Everolimus  

I used to take mine in the evening together. Mind have to say nobody told me to take them that way it just suited me. 

 

Hope it works well for you all. 

 

Linda 

gmc
Member

Re: Exemestane/everolimus

Hallo Dis

I am on the E&E combo too, for the last 6 months, and have been told that it's vital to take them both together. I had my dose reduced 50% due to lung side effects but find I can tolerate this well now and at the last scan was told the bone mets were stable. Good luck with your treatment and maybe try the prednisole prescribed mouthwash - I've found it very good at preventing the ulcers and notice if I miss it for a day or so !

Gill x

DiS
Member

Re: Exemestane/everolimus

Thanks. So far so good. I have just got one mouth ulcer at the moment, but it is only day five! I have just coated it with Bonjelia liquid which I read about on here..

DiS
Member

Re: Exemestane/everolimus

Thanks for that. The breast care nurse has told me I can take one in the morning and one at night. Annoying. I will obviously have to ask the oncologist next week. Thanks again for letting me know.

Buzzing
Member

Re: Exemestane/everolimus

Hi Dis

 

I've been on Exmestane and Everolimus for a year now at first side effects from mouth ulcers were bad and then dose reduced to 7.5mg and I have coped much better.  When I was first given Everolimus I was also given a book/diary to log side effects etc.  In the booklet it states that the Everolimus and exmestane must be taken together to be effective, I was not told this by the breast cancer nurse who took me through the introduction or the oncologist.  I too was going to take one lot in the morning and one in the evening until reading this information which is really important can't believe the nurses are not aware of this.  

 

Hope you you do well on this combo I am told it is working for me and the cancer is stable.

 

Very best wishes to you.

 

buzz x

Sarahlew
Member

Re: Exemestane/everolimus

Hi Dis 

I'm on this combination and take them together with no apparent ill  effects. 

The main side effects I have experienced are insomnia with resulting tiredness had a few mouth ulcers initially but they have resolved now - used prednisolone mouthwash that was prescribed by onc. 

Hope it has good results for you x

DiS
Member

Exemestane/everolimus

After the failure of letrozole and Palbociclib after just ten months I have now been prescribe this e/e combination. I have been taking the Exemestane for over a week with no side effects. I have just had my everolimus delivered an hour ago. Very worried about possible side effects but if it works I will live with them. Just wanting to know if it is okay to take the Exemestane in the morning and the everolimus in the evening? I am sure I read somewhere that someone was doing this. I have phoned the chemotherapy nurses but they dont know. Any advice please? DiS