Everolimus - Oral chemo

I just wanted to let anyone know that is just starting the oral chemo Everolimus that you may come up in a form of rash, rather like a bad case of acne.  I had this over my chest, shoulders and neck  It came up overnight and did not hurt or was uncomfortable but to begin with I had no idea what it was or where it had come from.

 

On speaking with my Oncologist, the rash is a side effect of the drug and so they say, shows that the chemo is working.  They recommend Zinc to help sort out the spots and a course of antibiotics.  For me after two weeks of getting the rash, it is finally going down.

 

However, I have as a result of the chemo too, a chesty cough and shortness of breadth and it makes me feel rather tired as well so on top of my evening meds knocks me out for sure. 

 

I just wanted to share this in case anyone else was in my situation and wondered what it was as at the time it scared me as I thought I was allergic to something but wasnt, it was just the chemo doing its thing.

 

Wishing everyone out there a good and safe day.

Cookie17

Hello cookie

 

I took this chemo for about a year I started on the full dose of 10mg and took this for 3 months, after which it was reduced to 5mg due to side effects. My oncologist said it was not unusual for this to happen and the reduced dose did work.

 

Hope it works well for you.

 

Best wishes

 

Jan

 

 

 

Hi Cookie 17 I have had 15 cycles of everolimus 1st month was really bad so I was dropped from 10 mg to 7.5mg se are bad but do get better with time I have had 4 stable scans since starting this treatment.

As Jan says hope you go on alright with this treatment xx

hi there, i am on the e/e combo and now in my 4th month. i am on 10mg and have coped really well on it, my onc says i am too. i have had nosebleeds every day as a s/e and have just had one nostril cauterised  

( not sure if i spelt that right) i also had a rash on my neck for a few weeks which was really itchy and red and scaley.

 I am also feeling short of breath at times and really tired but mostly i am feeling ok.

i had ILC in 2011 had chemo, mx and rads and then on tamoxifen til this year when i had recurrence in liver and peritoneal area.

 i have my first scan on monday so keeping everything crossed. my onc is rushing results through so i get them on the thursday so wont have long to wait and stress. 

sue xx

hi yes i am on this combination and on 10mg, i am doing well on it but havent had scan yet, thats tomorrow, so dont know how well its working got my fingers crossed

sue

Hi Violetta and SB
Se’s are nasty but try to stick them out they do get easier as time goes on. I used Diprobase for spots and rashes. I f mouth gets bad ask for gelclair mouthwash and get ulcer pastilles from Boots. Best of luck girls xx

Dear Debra

This combo is supposed to be good for the liver se are manageable if handled right and settle down after a while spots are annoying I used witch hazel alot which seemed to help. You would be better looking on the old thread reading the old posts. 

Best of luck will be thinking of you xxx

Hi Everyone,

It has been a long time since I posted on the forum. I have been very well for the last 18 months or so and my cancer was stable, but the beast has woken up again. Previously I had 10mg of Everolimus for three months, with Examestane, but the SE’s were so awful I refused to continue with the drug, continuing just the Examestane.  Examestane was and is fine. I was not prepared to try the high dose again so bearing in mind my experience, my onc has started me off on 2.5mg this week. I see her again in three weeks to see how I’ve got on. I suspect she will raise the dose if all is well. I am so encouraged to read that the lower doses are also effective!

In conjunction with all this, I am trying to get to grips with the ketogenic diet, - low carb moderate protein and high fat, believeing that we can do a lot to help our bodies with good food and nutrition. The effect of keto is similar to Everolimus, in helping to block the mTOR pathway, as well as the Insulin Growth Factor receptor. Bot these receptors facilitate the proliferation of the cancer cells.

Best wishes to all of you,

Linda

Hi Debra

When I was on E/E my mouth was really bad 11 ulcers. My dentist told me I was having acid reflux he told me to go to my GP and ask for something for it he prescribed Lansoprazole and I stopped having ulcers.But one thing that did help was Gelclair mouthwash I got that prescribed by the onc but I asked them for that. Also Gengigel from Boots a gel that eases pain and sores with the ulcers as well as ulcer pastilles Boots own make infact Boots have a load of help with the mouth including a mouthwash for Dry mouth. If only I had known all these things when i was in pain they took me off 10mg and put me on 7.5mg and wouldn’t put me back on 10mg because I was showing stable on the 4 scans the 5th one was progression and i was put on Capcitabine as you know.

 

I hope I have helped you Debra. I would have liked to stay on E/E but hormone drugs no longer work for me. The side effects do get easier infact people were suprised how well I looked. I really do know what you are going through you have my sympathy it is known as the Devil drug. I know some have bad reactions in the toilet area but I managed ok and never had sickness.

 

Keep your chin up Debra and I hope they will help you out on Thursday I am sure but do ask for the mouthwash Gelclair and brush those teeth after Everything you eat. Sending you loads of (((((((((hugs))))))))))  Love xxx

Hi Debra

I was just eating some pineapple and I remembered it is very good for your sore mouth. It acts like a disinfectant in the mouth but frozen it is so cooling as long as it is sweet but most are and tinned pineapple works too.

Love and hugs xxx