anyone on everolimus/exestamene got advice on se's ?

[Minsterel]

Morning Glo,

I can't get bonjela here in France. My siste-in-law brought some Boots pastilles when she came over. What is the active ingredient in the Bonjela products? Perhaps I can find an equivalent.

I also have niggling headaches - usually start about 1am. They sometimes ease during the day without anything, but sometimes not. When I had Avastin chemo I had bleeding in my nose, that seems to be continuing. The most difficult to deal with are the days of fatigue. They are far greater and more frequent han I experienced with chemo. Perhaps it is just the transition period still. Here's hoping it gets better as the body accustoms itself to this medication.

When do you take your tablets? I take mine at night - the Exmestane after supper and the Everolimus when I go to bed. 

Have a good weekend.

Minsterel

[Glo]

Hi Minsterel,
Nice to meet someone at the same point!
I bought "bonjela complete plus" (not bonjela gel) which you "paint" on the ulcer and it forms a protective/healing film. Has worked very well on the latest ulcer as its virtually gone after 3-4 days.
Good luck.

[Minsterel]

Hi Glo,
Nice to have your update. I'm just coming to the end of my first month, so one mouth ulcer under the tongue is not too bad! Eased it with the regular mouthwash 3 times a day - 5ml bicarbonate of soda in 500ml water as recommended by hospital, and sucking antiseptic pastilles. I'm on the full 10mg dose and like you I hope it does the trick. Had a good week this week. Take care,
Minsterel.

[Glo]

Just finished 1 month and only SE has been mouth ulcers. 1 pretty bad at back of throat which made swallowing and eating very painful, lasted about 10 days, with the worst of it about 4-5 days. That cleared up then 4 days later anyone on cheek side, but nowhere near as bad! On higher dose and will persevere if it's going to work!! Glo

[Minsterel]

Hi Everyone,

I'm new here. I live in France and have been diagnosed with ABC - mets in the peritoneum and on the spine after 13 years disease free.   My cancer is HR++ ( Oestrogen and progesterone). I have just started the everolimus/exestemene combination following chemo of Taxol and Avastin. I had two full cycles of the chemo, but the oncologist didn't think it was working well enough, so changed to the tablet combination. It is hard to assess the SE just yet as the chemo is still working its way out of my system.  The first small ulcer appeared under my tongue this week - and my gums seem to have gone very pale! The transition from chemo to tablets has been tough with a degree of fatigue I did not experience with the chemo. Still, I am hopeful that this combination will be successful, and that the next CA15 will show a fall. It is currently at 311!!!

I have my first scan at the end of December and see my oncologist at the beginning of January. Look forward to getting to know you .

[LYNDYLOO]

Evening Janice

Not been on here for a while.  I am still on the lower dosage at the moment.  Just had CT scans done on pelvis etc on Monday just gone.  Hopefully nothing has changed.  What treatment are you changing to now?

Hope you are still keeping OK.  I feel the lower dose was OK.  The only real side effect I have is tiredness and joint pains which I don't know whether it is part of the treatment or just old age.  I could retire in January next year as I will 62 then.  I do like working but some days it is a struggle to get through without wanting to nod off.  Take care Linda

[Janice]

I have just been taken off this combo after a year, I did 3 months on the full dose, then due to side effects namely inflmation of colon and lungs and feeling awful I was put on the lower dose. I had water retention which effected my eyes, felt really uncomfortable, but I managed with some ups and downs.

Hope you tolerate it well.

Jan

[Glo]

As I said I got 3+ years out of letrozole! No I was not offered Faslodex, just this combo. It has very good reports so fingers crossed!

[ponsmuir]

Good luck with the blood tests.
It's an expensive treatment costing £3k a month, funded by the Cancer Drug Fund, so yes, a limited number are eligible for it.
My Onc is hoping that as a I had a great response to Letrozole (lasted 9 months), I will do well on this.
We will see!
I know of one other person who is on it, and she has had a couple of mouth ulcers. And another couple of people, one who did well for 22 months and the other for whom e/e did nothing at all.
Were you offered Faslodex, by any chance, as an alternative treatment?

[Glo]

I have started on the 10mg dose. 1 week in now and a couple of ulcers but nothing too bad (and hopefully they not get too bad).
I was under the impression they were a very common SE and not a result of deficient immune system.
I am getting my bloods checked next Monday (after 2 weeks treatment) so will see what all the blood counts are!
I am on this treatment after 3+ years on letrozole which got me to NED so I was a shock to get progression after every scan from diagnosis was positive (diagnosis secondary from the start).
Hopefully this combo will do as well!!!
You're right there don't seem to many people on this treatment but the criteria are quite specific.
Hopefully it's good to you and everyone else on it!
Glo

[ponsmuir]

Glo,
Thank you so much for bumping the e/e thread up. I was getting the impression that fewer people were on it? Like you, I'm new to this combo, my second month, and am taking it as a maintenance treatment after 6 cycles of FEC chemo which was hard but effective.
So far I haven't had the dreaded mouth ulcers, though I have been warned. I checked it out with my dentist who said they are caused by a deficient immune system. So no point really in doing all the mouthwashing until they appear. Good dental hygiene is a must of course and I've changed to using a soft children's toothbrush.
I'm still on the 10mg dose - are you? My Onc is very careful to keep an eye on my neutrophils as they can crash. I do get joint aches and pains, though. Best of luck with the combo x

[Glo]

Just started this combo on Monday (13/10) so very early days! Been religiously doing salt water mouthwash (I leave a glass in the kitchen and rinse every time I pass), use the mouthwash they gave me at the hospital twice a day and drinking 2-3 litres of water a day (must be good for me running up and down stairs to loo all th time!!!) wait and see time!!! Glo

[2catlady]

Bumping up for Kimmy xx

[2catlady]

Hello,Linda,and welcome back. So glad you enjoyed your holiday and bikini !
Hugs,Helen xxx

[LYNDYLOO]

Evening Janice

Not been on here for a while.  I too started on high dose find the lower dose much better not got many side effects apart from feeling tired.

Have been on holiday to Corfu from 4 August till 18 August.  Throughly enjoyed it was nice to be able to get my bikinni back on after having my reconstruction was re done on 28 June. Had to come off tablets all together for a month after my surgery on 28 June as the treatment can stop us from healing well.  Not seeing oncolgist for another month.  Normally I see her every month but with stopping treatment she said to wait 2 months to see her to see whether treatment has kicked back in.  When I was off treatment my tumour markers went to 41 which to them it is not high but it is high for me as mine in January 2013 was only 15.  Time will tell.  I hope you are OK. Take care Linda.

[2catlady]

Bumping up for Mavis xx

[Janice]

Just wondered how everyone is doing on this, I am on my 10th month not too many side effects,but have doubts about whether its working. Must be due for another scan soon.

Still on lower dose, pharmacist said that if he gets a percsription for full one he knows its only 1st or 2nd as most get reduced.

Best wishes

Jan

[roxy12]

Hi Linda.

Things are okay at the moment thanks. Am just on anastrazole until August when I think I will be starting xeloda. 

Going away on Monday to stay with an old friend for a few days. She lives near Falmouth and we have known each other since we were literally tots! She went to work in Cornwall as a teenager and met her husband down there.

We are going to have a "girly" few days. Plenty of wine and walks on the beach even if it rains!

You take care and good for you booking for Corfu.😀😁 love Sheila. Xx

[2catlady]

Oh Linda fantastic,you need to get your bikini packed now. Yes,another sunny day in the NE you'll have a tan before your hols at this rate.
Enjoy tea with the grand kids,take care,Helen xxx

[LYNDYLOO]

Hi Catlady
Booked up for Corfu this morning. Not been there have you? Another lovely day in the NE never been known. Grand kids have just arrived back from school must start tea.Take care Linda

[LYNDYLOO]

Hi Roxy

Thank you for replying.  How is things with yourself at the moment?

Booked up for Corfu this morning.  Not been there before have you?

Take care Linda.

[roxy12]

Glad everything is going okay Linda. Enjoy your holiday.

Love Sheila. Xx😀

[2catlady]

Hi,Linda,that's fantastic that all is looking well. Oh,great to holiday,that will be lovely all of you getting away together.
Oh,I bet newcastle was hot yesterday .
I was sitting in garden and had to come in as too hot,I know ,never heard of in the NE lol! I love the "toon" well my triangle of M&S,John Lewis & boots! I go with my sister & never seem to get further than those three shops even though we are there for hours lol.
Take care and get booking your holiday,huge hugs,Helen xxxxx

[LYNDYLOO]

Afternoon Catlady

Just thought I would send a quick message as to how I am doing.  Went to hospital yesterday to get dressings changed.  All healed so no need for any further dressings.  I met hubby in Newcastle for lunch then dropped car off at home and went for a couple of drinks to celebrate that things at present look OK.  Looking to book a holiday with hubby daughter son in law and grand kids so hopefully I will go back to work looking tanned and healthy. Take care Linda

[anne5]

Hi Guys

Will try and keep this short but not too sure i can

I was diagnosed with stage 3 breast cancer with lymph node and vascular invasion in July 2007 - had lumpectomny but no clear margins so had mastectomy with LD reconstruction - then had 3 cycles of FEC 2 of taxotere as had massive anaphylasis and then 2 CMF - 30 courses of radiotherapy then tamoxifen - manged to stay no evidence of disease for 4 years - when in Novemeber 2011 was diagnosed with extensive liver mets - liver in failure and bone and 2 small lung mets.  Commenced Capcetaibine and had a fantastic response (was given 6 weeks to live!!)  Have had 45 cycles of cap and although liver now very good - lung and bone mets are now on the move - joy ( have multiple Pulmonary Emboli at present too (had this 16 months ago too!!!)

Am going to start this combo in 2 weeks so any advice re side effects would be fab - a little nervous to say the least as Cap was  a sort of safety net - hope this makes sense .

Gill  

[2catlady]

Hi,Linda,yes,I was grade 2 &ER .So really shocked mine changed in less that a year.
I don't blame you not going out incase you get knocked.
I don't blame you being cross with hubby. They tend to bury their heads in sand sometimes.
Yes,sun again in the NE! We are off to visit a Red Cross garden today so I hope it stays sunny.
Oh,great to getting 4 weeks off then your holiday. Can you not get another 4 weeks off from doctor? Might be worth having a try as it's quite soon to return to work after major operation.
Take care,huge hugs,Helen xxxxx

[LYNDYLOO]

Evening Catlady

I feel so sorry that they did nothing sooner especially as yours was a grade 3 which is the fastest growing.  Mine was a grade 2 and ER only.  Mind things can easily change to the other one.  As a few ladies are here have done.  Not gone out tonight as I usually so sitting in and drinking some wine.  With the surgery only been a week ago I was frightened that I get knocked.  Hubby has gone out with a couple of friends to Newcastle which I am not very happy if it was other way round he would expect me to stop in like I did when he had the shingles and when he hurt himself cutting down the tree.  No one knows what the future will bring I have not said anything but I will not forget if he ever needs to go to hospital for anything I will not be going with him.  He does not like hospitals but who does.  If I am waiting for results I have to go myself just in case there is bad news.  Enough of my ranting about him.  It has been a lovely day in the NE today. 

I went to the doctors for my sicknote on Friday she made it out for 4 weeks that means I will go back to work on the 4 August finish work on the Thursday of that week for 2 weeks could not have timed it better.

Take care and cyber hugs. Linda

[2catlady]

Hi,Linda,lovely to hear from you. So glag you're out and your pleased with new boob.
I see my onc on 21st of July and it will be rads for three weeks 15 something or others ( can't remember what they called)
Yes,I'm very angry BCN didn't do anything when I told her as my tumour was a grade 3 cancer and had stopped being ER &PR+ .so not looking too good.
I think the cap chemo was mentioned. Surgeon said it will be up to onc when I see him.im hoping it is as the thought of no hair is terrifying as I've never experienced that before. I know it's coming but I'm trying to hold off.
Take care and rest up,do a bit of internet shopping for new bras.Huge hugs,Helen xxxxxxxx

[LYNDYLOO]

Evening Catlady

Came out of hospital yesterday that was a lot longer than I expected.  Like yourself I had a drain fitted which I could have went home with it still attached on Monday but it still meant I would have had gone back to get it taken out. It is much better than the one that was orginally fitted in November 2012 so I am pleased I insisted on a second opinion. 

Any more news about when you are starting your chemo and what type it will be?  I often wonder if you had been treated when it first was discovered you would be over it by now.

Don't know about you when I was in hospital I felt I was cut off from the rest of society.  Hope I don't have to go in one again for a very long time fingers crossed.

Take care.

Linda

[2catlady]

Hi,Linda,hope recon when great for you and you are recovering well.
Huge hugs,Helen xxxxxxxx

[2catlady]

Hi,Linda,I'm okay better than I was. My bl@@dy C has stopped being strongly ER so I'll be starting chemo soon after rads.
Oh wow ! Tomorrow that's fast . You will be fine,it's a great hospital and has very good plastic surgeons so hopefully your new boob will be fab.
Yes,sod work. You look after yourself.
Massive hugs for tomorrow,will be thinking of you,huge hugs,Helen xxxxxxxx
Ps washington old hall has a nice little coffee shop and great to sit in garden. You can do this bit free. As house a 5 minute job. Only go in house as members. But it's a nice afternoon out sitting in garden.xxxxxx

[LYNDYLOO]

Afternoon Catlady

How are you doing?  Have you been back to see the consultant to see everything is now that you have had the operation?  Even though I live in Washington we have never been to Washington Old Hall.  As I mentioned in my e-mail to Janice I am in tomorrow morning for re doing my reconstruction at the RVI with a plastic surgeon hopefully it turns out better than it is at the moment too high and under my arm which is really uncomfortable.  My oncolgist ask me to come off the tablets for a month as you can have trouble with wounds healing.  Really getting nervous now wish it was over and done with.  I have not told work yet think I will wait till Monday.  The way I get treated I did not want to give them the opportunity for me to train someone else to do my job.  Enough about me I will let you what the outcome is later.  Take care and keep in touch.  Bye for now Linda.

[LYNDYLOO]

Afternoon Janice

I have been on tablet for about five months.  I do feel a bit better on lower dosage.  i have to come off tablets all together for a month as I am going into hospital tomorrow for them to re do my reconstruction which I was never happy with.  This time I am getting it done in a different hospital by a plastic surgeon hopefully he can get them to match a bit better.  Won't hold my breath on that one.  Take care Linda.

[2catlady]

Hello,Linda how have you been? OMG! So many hot ,sunny days in the NE it's unheard of lol. I've been to your neck of the woods (or near) today. We visited Washington Old Hall, I was in need of a National Trust cuppa And cake.
I hope you've had time to enjoy your garden,I'm getting the sprinkler out( you know it will rain now)
Huge hugs & take care,Helen xxxxxxx

[Janice]

Hope you enjoyed the match Lyndyloo, how bad was that. 

I have been on lower dose now for 5 months, I am tolerating it but don't feel wonderful, find out if its working on Tuesday. I have been on treatment of one sort or another for so long I have forgotten what its like to feel normal, would love to find out.  

Best wishes

Jan

[LYNDYLOO]

Hi Janice

Just thought I would send a quick reply before I start watching the football.  No I have not lost any weight at all if anything I have gained about 3lbs.  I would like to get 1/2 a stone off that would take me back down to just under 10.1/2 stone which I was when I got diagnoised back in 2009.  I am still taking the lower dose as the higher dose made my skin really dry and itchy with acne spots on arms and a couple on face. How you getting on at the moment with the lower dose?  Best go downstairs as nearly 8 o clock. Take care Linda.

[Janice]

Anyone lost weight while on this? I have, can tell the way my cloths fit.

I had a scan 4 weeks ago, no results as yet, hadn't been reported on when I went to my appointment a week later, not very impressed, called hospital today still no results but was assured it would be chased so they would be there when I go back next week, so don't know if treatment is working.

I have found the hospital I attend has gone to pot lately,might be cuts but it doesn't seem to run as smoothly as it use to. When I spoke to them today I was given the impression that they want me to complain, I suppose if nobody does the powers that be think alls well.

Jan

[pumpkinsue]

Dear Helen,

                      Just wishing you all the best for tomorrow.  Hope it all goes smoothly!  I will be thinking of you! 

Best wishes,

Sue. XXXX

[2catlady]

Hi,Linda,I was just thinking about you as you haven't been on for a while. I always worry when I don't see someone posting.
So glad you are doing better on lower dose. Have you had any news on your reconstruction any date ?
I'm doing okay,having mastectomy on Tuesday as multiple new primary tumours. God knows what the pathology report will tell me,as he thinks as they grew so quickly in 8 weeks that they may not be ER+ so I'll still be ER+ bones mets and the new ones??
So as to treatment change I haven't a clue what's next.
Take care and good luck tomorrow at appointment,huge hugs,Helen xxxxx

[LYNDYLOO]

Sorry I have not replied sooner.  Computer has been down.  I have been alot better on the lower dose.  Back at oncology tomorrow see how the tumour markers are doing. Have you decided what dose you are going on.  I stuck the higher dose for 2 months looking back I don't know how I did it.  Even hubby can tell I look much better.  Did not realise at the time I was always agitated and on edge.  Let me know how you get on.

Helen

How you keeping? Has there been any change in your treatment yet. Looks like the website has been quiet again.

Hope everyone is doing OK.

bye for now Linda.

[Lynberi]

Many thanks Sheila, it's all very strange and frustrating!

[roxy12]

Hi Lynberi, I was taking evorilmus for 15months and I also had problems with taste. I didn't like chocolate but I could eat chocolate cake or ice cream. Strange but true. I think I went off red meat too but fish was okay. My taste did improve after a while and I could eat  certain chocolate such as special Thorntons and Mars bars. I lost weight while on this combo too probably due to eating less chocolate! Putting it back on now dispite just having chemo. 

Hope things improve and you have a lovely holiday. Love Sheila xx

[Lynberi]

Hi Everyone,

I am taking Everolimus and Exemestane and the latest side effect is change in taste. Wondered if anyone else has this.

Everything sweet tastes disgusting. Chocolate is the worst! It tastes bitter. Everying sweet tastes like they missed the sugar out and normally I have such a sweet tooth. It's awful and going to ruin my holiday, when the food will be fab. I'm craving something sweet and when I taste it it is awful. Anyone else found this? Savoury and salty things are ok x

[Janice]

Hi Kathy

I think everyone starts on 10mg but not many seem to tolerate it very well, I managed for 3 months and it did work but there has to be a quality to life. Been on 5mg for 4 months and had scan today to see how its working,I don't feel that confident, will find out next Tuesday. I was on capitabine and the dose for that is worked out on body weight etc but everyone seems to get the same on this.

Hope you get on OK, i think its accumaltive so you will probably be fine for a while.

Best wishes

Jan

[kathymalone]

Hi Lindyloo
I was going to start on the 10 mg. not sure it's the way to go for me having read about the side effects. Eek not sure what to do.

[2catlady]

Yes,lulu, thank you xxxxxx unfortunately you are right we do remember the bad ones. And there are a lot of good nurses out there.
Yes,the sun has gone from the NE too,boo hiss.
Huge hug ,Helen xxxx

[Lulu34]

You didnt offend me hunny.... I know there are some bad nurses out there and we need to get rid of them but just saying theres normally a hell of a lot of great nurses..... Many more than the bad ones but the bad ones are usually so rubbish they are the ones we remember unfortunately.

Glad your enjoying the weather.... It a bit dull here now but agree the sun always makes me smile too.

Lx

[2catlady]

Hi,Linda,wow! What weather! Sunshine in the North East! Yippee long may it last. Pain under control ,still sore but I can cope with it . The sun always makes you feel better.
Take care ,huge hugs,Helen xxxx

[LYNDYLOO]

Hi Kathy

This is my fourth month on EE.  I took 2 months 10mg.  Found side effects bad. Acne on face and arms, extreme fatigue, ichy skin and scalp which was so bad I could not sleep all in all felt pretty lousy.  Since changing to 5mg felt alot better skin has calmed down.  Feel back to normal.  Have they said what dose you are going on?

Hi Helen hows it going today.  Weather has been glorious hope you managed to get outside and not in so much pain now.  Just back from swimming so need to get showered. Take care. Linda

[2catlady]

So sorry lulu,I didn't mean to offend you. I know all nurses shouldn't be tarred with same brush. And I know for a fact you are defiantly one of the old style caring nurses,as your posts are always caring.
Thanks for the Brca info.
Sending you a soooo sorry hug,Helen xxxx