After feeling so much better since my little hozzy visit, I feel crap today and have been sick. Appetite gone again, too. As a result and because we don’t know how it will work out, we are not going away tomorrow and have cancelled the hols. I was thinking I may still be ok but OH said he didn’t think I would be and it’s not worth being sick on hols and he would worry the whole time. So no sunshine to bring back…Otherwise, the side effects so far have been dry itchy skin in places but no real mouth ulcers and my bowels are improving. Have had some mild stomach cramps.
Off now for another kip to try and help me feel better. Hope you are all feeling ok and Karen, hope the first day back at work has been good.
so sorry to hear you had to cancel your holiday as you are feeling ill. where were you going. ive just had w wonderful head and neck massage at the hospital, it was fab, i would recoment to everyone if your hospital does it. mags x
Liz, really sorry to hear you’re feeling bad again and have cancelled hol. Hope you feel better soon, I have whimped out of restarting Everolimus til I return from Cyprus in 14 days. Will bring the sun home for you. Take care, take it easy and look forward to a trip away when you are better. xx Kris
So sorry to hear you are having bad SEs again Liz, and you had to cancel your holiday We had to change a recent trip to Amsterdam when I was feeling grot on my first Xeloda, but managed to re arrange it for a month after, hope you can too. Having said that it was still so bloomin’ cold I wish I’d changed it for a trip to the sun! Wishing all you ladies well on this treatment and hoping the SEs lessen. I mentioned these to my onc when I saw him last week as he did his Phd on this combo and he said it was the only major breakthrough in BC treatment in years. He seemed to think the ‘only’ significant SEs were the mouth ulcers that should go after a few cycles - me thinks he needs to read this thread!
Good Luck ladies
Nicky x
Hi Liz,
Really sorry that you have been feeling bad again. Hopefully this will pass and you will soon feel better. I have had a few set backs in the past but they seemed to get less and I have been taking this combo now for nearly 9 months. Still get SE of course but they are not as severe. Hold on in there!
Kris, Have a great holiday and dont forget to bring the sun back with you!
Take care all of you and thanks for you good wishes Nicky. You are right. These Doctors need to read these forums. When I went to my GP just after Christmas because of the really bad mouth ulcers he would not have it that it was from the evorilmus. He kept saying that it was because I was run down from a virus I had. xx
Hi Sheila, hope you re relaxing a bit now, or alot. Your posts are so encouraging, I am determined to stay on everolimus and it helps to hear your SE have lessened over time. I’m sure everyone on here feels the same. I agree docs shouls read this thread, I told my Onc and the nurses its a great resource. I learn more from here than anywhere else. Love to everyone and keep going xxxxxxxxxxxxxx Kris
Liz really hope you’re feeling better x
hi all, sorry if you have already read this on bone mets page. i went for my zometa today and was told that they are going to change it to xgeva denosumab it is given by injection rather than intervenously which saves time etc. has anyone else heard of it/ i have been on zometa for nearly 2 years and have been very happy on it with no side effect. seeing cons next week and going to ask him what the differance is between the two drugs also if i could wait a month or so so that i can sort out the s.e. with the combo.
s.e. are much better only a sore jaw at the moment. i want to stay on it and i am determined to combat the s.e.
looking forward to meeting few of you tommorow in brighton at my house, it will be lovely to put a face to a name and meet and having a chat # mags
hi all, sorry if you have already read this on bone mets page. i went for my zometa today and was told that they are going to change it to xgeva denosumab it is given by injection rather than intervenously which saves time etc. has anyone else heard of it/ i have been on zometa for nearly 2 years and have been very happy on it with no side effect. seeing cons next week and going to ask him what the differance is between the two drugs also if i could wait a month or so so that i can sort out the s.e. with the combo.
s.e. are much better only a sore jaw at the moment. i want to stay on it and i am determined to combat the s.e.
looking forward to meeting few of you tommorow in brighton at my house, it will be lovely to put a face to a name and meet and having a chat # mags
Just a quick note from me. Still feeling a bit crap and nauseous but trying to hang in there on this drug and hope the side effects lessen in due course. I’m about to go and sit outside with my coat on and pretend I am on holiday…
I had zometa for 4.5 yrs and just went on to denosumab in Feb. It’s so much easier than having iv and hunt-the-vein and I honestly don’t think any of these side effects are down to that - am sure it’s all the ever/ex. It is also supposed to be even more effective than zometa so here’s hoping.
Well, am feeling quite a lot better today and am eating again although not huge amounts but that’s good for the clothes!
Today’s side effect - the rash has been back on neck and arms mostly and itched like crazy. Rather than go to docs and wait, I went to chemist where I get my drugs and he gave me anti-histamine pills, one a day, no doziness. Within half an hour, the itching had stopped and the rash had diminished in redness. Result.
Have a great weekend (or at least as good aas possible) everyone xx
Hi to all on this forum
I am British but live in Madrid as my OH is Spanish. I was confirmed with bone mets at the same time as the breast tumour was diagnosed in 2009. It is comforting to read all your comments from the British treatments.
I started everolimus/ex. a month ago having previously tried all hormone therapies on the market and having been a year on Xeloda, which stopped working last December. I then had a radio therapy course for pain in my leg which was very severe and needed Sevredol and patches for the pain. Now I am on the ev/ex mix and the pain is much less.
As yet I don’t have the mouth ulcers, which my onc did tell me about, but my mouth is generally very tender. I do however have the rash and spots on my back, chest, neck, tops of legs and the pimples in my hair. Tiredness is a real problem and I did have one day when I was dizzy and sick every time I sat up. As I still get dizzy on some days although not throwing up as well, I am having a scan of my craneal area for this as my onc says it can sometimes affect this area although it is very rare. Apparently the scan is just to rule it out but they always say that!
I am trying all sorts of creams for the rash and spots but it is difficult to sleep at night for the itching!
I will put up with anything as long as the cancer is under control. And I hope to check in with you all regularly - just being able to talk / write / read about it in English helps!
Hi Liz
pleased you are feeling better.I had the rash come back a couple of weeks ago but it is disappearing again,my onc told me to get antihistamine pills for the itching and they worked well but I took them at night as I already felt half asleep with the painkillers.
I had to be weighed before my denosumab injection and I had lost 2 kilos,appetite comming back so that could change.My main problem this month has been the mouth ulcers,they have been so bad I have found swallowing painful and eating virtually impossible.Nausea been a prob but anti-sickness sorted that…just fed up adding to the list of pills.I had my scan on Tuesday and have not taken the everolimus for the last few days to give my mouth a chance to heal.Really hoping for good results next Tuesday and then it will have all been worth it.
Welcome along Gillanne (if you know what I mean!). I was supposed to be on holiday in Mallorca at the moment but as you may have gathered, decided not to go when I felt very sick and nauseous again at the start of the week. Am feeling quite a lot better now and hope that my body is now acclimatising itself to the side effects and at least will be ok as we are booked to go again in late May. This time I was most disappointed that I couldn’t meet up with a friend I met via breast cancer. Although she doesn’t have mets and is a bit older, we get on really well and our hubbies do too so it’s a very relaxed meet-up. Next time…
Lynn - the anti-hist are cetirizine and haven’t made me at all drowsy. That was my concern on top of the morphine, anti-sick meds etc, etc. I haven’t been weighed before denosumab - I must look my usually dumpy self!! Sorry about the horrendous sideeffects of the mouth ulcers. Could well do without that on top of everything else. I’m just hoping the anti-sick meds along with the anti-travel sick wristbands are helping me. Do let us all know what the results are. Like you say, good results make it all seem wothwhile (although that may be in doubt when I have my head down the loo!!)
Glad you are feeling better Liz. Hope it keeps up and that you can get away at the end of May. That’s a good sign that your appetite is improving. At least if you’re eating you can eat the things that keep us fit and help the immune system. My onc always says the the evorilmus isn’t good for your immune system.
Lucinda.Sorry you are having a bad time. My worst time with the mouth ulcers was Christmas through January when I had been on E/E for about 5 months.I couldn’t eat then either. I still get the odd one but nothing like I did then. All I use now is salt water mouth washes two or three times a day. It’s easy to forget when your mouth feels ok but I dont want to risk them coming back! I lost about 4kg but I am slowly putting it back on now. My appetite is good now.
Welcome Gilliane. I hope this treatment is kind to you and works well.
Love Sheila x
Liz, I totally sympathise about not going on holiday. I was supposed to visit my daughter in London at Easter and just didn’t feel well enough in the end. It hasn’t been a great Spring for weather so far here or in Mallorca so perhaps at the end of May you will get better weather anyway. My appetite has gone too but I have a few pounds I can lose anyway!
And thanks for the histamine tip - my rash itches so much at night, usually worst about 3 in the morning, so I am glad to try something else apart from the creams.
I was on Zometa for about three years until I had some problems with my teeth and they made me stop but recently my onc said I should start again. I hadn’t heard of denosumab but am going to suggest it to him as it sounds much easier.
Tip for diarrhea: I also get diarrhea from time to time, most recently this weekend and I take Loperan capsules, manufacturer Chiesi, and main active ingredient Loperamida 2mg. These were given to me for the dia that usually comes with radio therapy and they are very effective, for me at least. The instructions say take two when you have just ‘been’, but I only take one and within the hour I am feeling better and hungry. The things usually have the same name in all languages.
I am on quite a good day today, you know how it goes!
Hello Everyone
Having a quick catch up. I hope all the side effects are having a quiet day. Really sorry Liz you had to cancel your holiday - that must be awful and I hope you get to enjoy it soon.
I was told if I was not affected by nausea early on with the treatment it probably wouldn’t happen down the line. Sadly, I know this doesn’t help some of you but I am trying to be encouraged by it and hope others might.
I’m doing well so far, with only one or two ulcers which come and go. Still nervous it could all change. Good luck with the scan tomorrow(?) Lucinda. Take care all.
Hi all, great news on my c.t. scan. the small spot in my liver is smaller than last scan in december. my back pain has gone which i have had since i have had the secs. consutant says the treatment must be working and to carryon on the half dose and dont have to go back for 2 months instead of the ususal 1 month and have another c.t. scan in 3 weeks… what a relief. lets hope it continues and helps us all.
s.e. have been better but waiting 2 1/2 hours to see consultant yesterday brought on tummy churning and dia, nerves, and the sore mouth is back today but i dont care and am determined to cope with it.
Brilliant news BB!! I bet you feel great! Good that your back pain is gone too.
Like you say, the SE are worth it if the meds are working!
Take care, Love Sheila x
We had to change a recent trip to Amsterdam when I was feeling grot on my first Xeloda, but managed to re arrange it for a month after, hope you can too. Having said that it was still so bloomin’ cold I wish I’d changed it for a trip to the sun! Wishing all you ladies well on this treatment and hoping the SEs lessen. I mentioned these to my onc when I saw him last week as he did his Phd on this combo and he said it was the only major breakthrough in BC treatment in years. He seemed to think the ‘only’ significant SEs were the mouth ulcers that should go after a few cycles - me thinks he needs to read this thread!
Your posts are so encouraging, I am determined to stay on everolimus and it helps to hear your SE have lessened over time. I’m sure everyone on here feels the same. I agree docs shouls read this thread, I told my Onc and the nurses its a great resource. I learn more from here than anywhere else. Love to everyone and keep going xxxxxxxxxxxxxx Kris
tummy churning and dia, nerves, and the sore mouth is back today but i dont care and am determined to cope with it.