Afinitor

wendy_h67

Had discusion with oncologist this week and looks like I will have to start on Afinitor. I had been on Aromison for nearly two years and now my tumor markers are climbing up again. Having a bone scan first. I have heard about the  mouth problems. Has any one who has been on this drug got any tips on coping.  Wendy h 67

wendy55

hi wendy 67,
well i was on affinitor for 15 months, and yes certainly experienced mouth problems, the first thing i would suggest is if you can have a visit with your dentist to get your teeth checked to make sure all is ok first, there are several products on the market and they may even give you some when you start on the affinitor, there is also a pack that the drug company hands out as well it contains several items to help with mouth care, I found kennalog paste, very useful at night to put on any mouth ulcers, its a bit fiddly but worth it, i went to our womens and childrens hospital in adelaide and purchased a product they specifically make for babies who are teething, it has lignocaine in it, when i did have ulcers i found brown rice was easy to eat and really helped, but we are all individual and you may not get this problem, i found fatigue was my biggest issue, try not to eat spicy foods or anything crunchy which may excacerbate the problem, its really trial and error, but definately go for a visit for a dental check up and tell your dentist you are going on to affinitor as well he may have some tricks and tips for you, please let me know how you get on, im still on xeloda not a lot of fun but i am getting used to it at least as much as i can!!! take care,
love
wendy 55 

wendy_h67

Thank you  for your help. I  haven't started the Affinitor yet . I'm  having a bone scan first then seeing the oncologist again . She just mentioned that Affinitor was my next option if the Aromisin isn't doing the job any more. She is going on holidays, so I won't  know until mid October. Time to visit the dentist.  Mean time I am having a colonoscopy tomorrow.  Just about to start to drink the prep.  Don't  look forward to that. Hope you are having a good day . Love Wendy h 67

primek

Goodluck with the prep and colonoscopy.

sparker66

Dear Wendy,
ive been on Affinitor for quite a while now and yes was suffering with shocking mouth ulcers! My oncologost halved my dose, but it really wasn't what he wanted. There is a trial going on, not sure if it's over, but they are using Dexamethasone (it's a steroid) as a mouth wash! I've been back on the highest dose for a month now, rinsing my mouth 4 times a day and not one ulcer! Hope this might help you too xxx

wendy_h67

Thanks for your help. I might mention it to my oncologist when I see her  just over a weeks time. Having a bone scan on Monday then Tuesday I am going to the BCNA forum at N ewcastle . I might even ask the oncologist at the forum if he knows about it. Thank you love Wendy h 67

wendy_h67

Hi Sparker I just wanted to tell you that I spoke to my oncologist about using Dexamethasone as a mouth wash for mouth ulcers when taking Afinitor.  She had recently been to America for a conference and they discussed it there. They said they were having good results . So I pick up my script today for Dexamethasone. Now I just have to wait until the Afinitor comes in. Which should be any day.  At least I will be ready when thoes nasty mouth ulcers appear. Thank you for your help. 

Douglass

Hi Sparker
I have been taking Afinitor over the past 4 months. I get regular mouth and lip ulcers. I find a gargle (2xdaily) with top quality bicarbonate from health food shop is good. Avoid hot/cold food, drink and chilli curries! Hope this helps!
best wishes
Rachel