Everolimus and Exemestane or Capecetabine?

Hi, sorry cant be much help but I'm starting capecetabine next week, I'm dreading the side effects especially nausea let's hope it's not as bad as I'm expecting but we will see, was on ibrance, letrozole and zoledex  but after ct scan showed a small progression in lungs having to go on capecetabine.  Wish you all the best

This is difficult as I don’t want to colour your judgement on the best course of treatment for you. You really should take your Oncologists advice on this. I can only speak for myself but my experience with the EE combination was difficult. It is a targeted drug therapy not just a general chemotherapy so it targets certain cancer cells and not all cells. I found that I had a lot of side effects. Sore mouth, loss of taste, but the worst for me was the fatigue. I also developed a cough and was really breathless. It obviously didn’t agree with me so my Oncologist decided to stop it. I want to stress that this is my experience and I am sure that other people’s will have been different. It was very frustrating because the treatment was working well apart from the side effects. I have been on Cape now since January. This is not a targeted Chemo drug. I have had very few side effects. Peeling hands and feet. I use Udderly smooth moisturising cream which had virtually stopped it. Very slight fatigue only occasionally and have had a very positive CT scan recently showing a good response to the treatment. I hope this helps a bit. Whichever way you decide to go, I wish you the best of luck.

Thank you for taking the time to reply and share your experience.  The oncologist has left the decision to me and suggested to go online to find out about the drugs.  Getting personal experience is helpful.  The side effects to all the drugs are scary.  I had forgotten just how much but remember the same daunting feeling when I read about Fulvestrant and Abemaciclib.  I have until Monday to decide so will weigh up the pro’s and con’s.

Thanks again

I appreciate your reply and wish you well on Capecetabine.  I would like to find a drug/drugs that work longer than a number of months as long as the side effects a manageable.  At least the choices of drugs are all in take-home tablets.

I was on everolimus/exemestane from November 2019 until March when it was stopped due to coronavirus.   I initially had bad mouth sores but this was sorted out by lowering the dose.  I coped quite well and my liver and peritoneal tumours were kept in check.  Unfortunately due to the treatment being halted I developed progression in right lung and bones and not sure what treatment options are now.     However I  did well on the EE plan with no major side effects -  hope this helps x

Hi I was on EE for over two years came off in March and put on Tamoxifen due to the Covid-19 outbreak was due to go on Cap.  I managed reasonably well on EE yes there were side effects especially in the first six months mouth sores loss of taste and slightly breathless but it worked really well for me until slight progression in February.  I was due to have a burst of radiotherapy but was told I have to wait the twelve weeks in lockdown.  Now have telephone consultation next week with a new oncologist who I have never met and I am also very anxious about the results of my last CT and MRI I had in June.

Its horrible having to start a new medication routine.

Stay safe hope you keep well.

Susan

Hi Susan last year I started with Letrozole then Ethemestane but so far Tamoxifen has had fewer side effects and I've taken it for much longer. All the best for the radiotherapy. I did not have a good experience with radio but hopefully it's stopped further cancer. All the best with your treatment Maria G

I honestly don’t get why some hospitals have stopped treatment and others haven’t. I have been on the Cape tablets throughout lockdown with just three weekly blood tests and a phone call from my Oncologist to see how I am and to confirm I can carry on with the next cycle. I even have my tablets delivered to me! It makes no sense to me at all. I hope they get you back onto treatment as soon as possible! Best of luck.

Thank you for sharing your experience but sorry to hear that your treatment stopped.  I don’t think Covid-19 should be used to stop treatments which have an impact on our lives.  I hope you are getting somewhere now with regards to starting drugs.

Thank you for sharing your experience in EE.

 I was surprised at how stressful changing to a different treatment plan was.  I hadn’t realised how I had become accustomed to the side effects.  I had forgotten I had been this worried about the side effects of the last treatment.  EE seems scarier.  I haven’t finished my first week yet and the oncologist, when asked, said they normally kick in about week 2 to 3.  The fatigue is creeping back though.  Bruising is worse than the other treatment.

 I hope you heard good news about your scans.