after taking letroazole and ibrance for 17 months , I had to stop because I had progression in my liver mets and sternum
I have started taking everolimus and Exemestane. and i am almost 2 weeks into taking them . 10 days in and I started with mouth ulcers and a very painful tongue . Can anyone recommend a mouth wash to use to help with this ?
also I’ve just had my cholesterol level and glucose levels checked at my GP surgery and although my cholesterol is within. Normal range my glucose levels have raised in this short time !!!!
Can you please share your experiences with theses drugs and guide me as what you think I should do regarding this?
I’m in the UK and getting hold of my oncologist in between scheduled appointments is almost impossible andmy GP surgery so not know what to prescribe as they know little about these drugs
Many thanks xx
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Jenhood
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Hello, I was given a mouth wash which contained desametasone, it worked very well. It was a drug they produced at my cancer center specifically for Everolimus side effects. As for glucose levels you should talk to your oncologist, it’s important to have them under control.
I got given the same mouth wash. I think it really helped stave off any issues. After a couple of weeks I was able to gradually reduce the amount of times I used it, and have stopped taking it altogether now for probably a month. I did get a sore in the corner of the mouth just last week but I'm not even sure it it's from the drug, or simply from being, run down as I've had a lingering cold as well
I had Everolimus and Exemestane but I had to stop Everolimus after ten months because it caused liver inflammation. I also ended up having my gall bladder removed as it got badly inflamed too. The oncologist didn’t think it was related though.
I was given two forms of mouth wash but I didn’t end up needing them. Dexamethasone was one but I don’t remember the other one. The clinic provided them free as they help people stay on Afinitor.
The endocrine system which affects blood sugar is the liver, gall bladder and pancreas so Afinitor could be upsetting your sugar levels. I’ve not had that issue even with my gall bladder and liver inflammation but that’s not say it can’t happen. Your doctor can treat it with Metformin if the number is high enough. I’d report it to the clinic myself as GPs often know very little about oncology drugs and side effects. I became anorexic on Afinitor but once I stopped it I found the missing weight quite readily.
And although I stopped Afinitor after ten months seven years later I’m still stable on Exemestane. The doctors don’t know why that is as they didn’t expect it but it is so that’s all that matters.
Afinitor has a high drop out rate according to my oncologist but it trialled well. Progression Free Survival time was double compared to Exemestane alone although I’ve done very much better than that statistic.
Hi Kerry. I was just looking up these two drugs as my new dr, whom I just saw yesterday, has put me on them. This post is like 6 months old and I am wondering if you are still on exemestane, but you stopped everolimus because of liver inflammation. Scary. I have 5 mg of that and 25 of exemestane and I am starting today. Thanks for your input.
Yes I’m still on Exemestane. The liver inflammation didn’t really affect me but I did develop anorexia so for a few months I lost weight. The liver inflammation is a rare side effect but I didn’t get mouth ulcers which is common so I think I was lucky. Plus I was overweight so I had weight to lose. I found most of the lost weight but not all of it - not for the want of trying though! 🧁
Hee hee. I hear you. Thank you for your response, so you are stable and still on the estrogen blocker with no issues? That is great. I need to get my markers down and new dr has put me on these two and I hope it works as the last year and a half have been depressing and challenging. Just grateful that I have a new dr that knows what he is doing. It is super important the people stand up for themselves. Thank you for taking the time to reply. Update 2 months. Dr had me on 5mg to see how I tolerated it for a month. Now on 10 and finally both tm's are dropping. Thank God. Other bloodwork is ok. I pray it continues to work.
Hi, I was prescribed Gelclair sachets you mix them with water & swish around your mouth about an hour before eating ( Do not swallow) it coats the inside of your mouth so it’s not so painful to eat. Also Difflam mouthwash, to swish after eating this numbs your mouth. I have had hard to reach ulcers in the very top of my mouth / jaw and used Superdrug sore mouth gel when effects of Difflam wore off. It just numbed the ulcer enough to dull the pain.
You can by Gelclair on Amazon etc. but it’s very expensive. My GP won’t prescribe it, only the oncologist. I am based in the UK. Do you have a specialist secondary breast cancer nurse you could speak to?
Hope things improve soon, and the treatment is successful. Xx
Hi, I'm also in the UK and like you have trouble getting hold of the oncologist or specialist nurse in between appointments. When I first started on Ibrance I got terrible mouth ulcers and sores, the oncologist prescribed Benzydamine Hydrochloride 0.15%w/v Mouthwash. It worked really well. I don't need to use it anymore as thankfully I now longer get mouth ulcers or sores. Best wishes to you and all the lovely ladies, and men on this site.
Salt or baking soda with cooled, boiled water also makes an effective mouthwash. Usually the sore mouth goes away after about 4-6 weeks so hang on in there. Raised blood sugar is a common side effect- I have been put on metformin and also my Affinitor dose dropped from 7.5mg to 5 mg daily which is much better.
Hi, the drug didn't work well for me. It made my liver enzymes go up. I moved on to another medication. I didn't have any mouths sores but was told to eat whip cream to coat your mouth before taking the meds. I pray this medicine works for you.
I had a terrible allergic reaction to those two drugs. Rash all over that turned into hives. I swelled up all over and I’m left with arm lymphodemia that won’t go away. It took at least a month for my reaction to go away
I've been on this combo since March. My oncologist gave me a prescription mouthwash (Dexamethasone oral rinse 0.1 mg)but I have never had to use it. Since the Everolomus affects the mucosa of the GI track I put my tablet in a empty gelatin capsule and swallow that way. It doesn't dissolve until it reaches the duodenum . I have never had issues with mouth sores etc. I believe in prevention if I can rather than treating the side effects after they occur. It's not always possible but in this case it was for me.
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