62210members
327489posts
cancel
Showing results for 
Search instead for 
Did you mean: 

exemestane and everolimus

166 REPLIES 166
Community Champion

Re: exemestane and everolimus

Ramade, Thanks. My post was supposed to say finger nail fungus. How the check did my"Kindle" get and change it to to "confidential fungess". I'm going to go edit it.FF

Member

Re: exemestane and everolimus

tf, for confidential fungus i found coconut oil works like magic.

 

Ramade xx

 

 

Member

Re: exemestane and everolimus

Hi. I started this about 8 weeks ago.  During the first month I got really awful mouth ulcers and was told by BCN to stop taking everolimus but continue with exemestane until I saw ONC 

 

when I saw him he wanted me to try again, but this time he prescribed mouthwash and similar products - and told me to use them to prevent instead of to cure.

 

I am now coming to the end of my second month, I am seeing him tomorrow.  This time I have taken the full month.  I did get some mouth ulcers but nowhere as near as bad as first lot.  ONC did say that my body would learn to tolerate the pills and the ulcers would stop.  I do not seem to have any more developing.

 

my advice would be to make sure that you have treatments for mouth ulcers to hand and use them at the first sign.  Also buy an extra soft toothbrush and maybe an over the counter mouthwash and start using straight away.

 

good luck

 

 

Member

Re: exemestane and everolimus

Morning

Regarding combo I was on it for 3 years 7 months. I was started on 10 mg Everolimus but found had too many side effects so was changed to 5mg after a couple of months. Found after that did not get any .major side effects.

Good luck when you start new treatment.

Linda

Community Champion

Re: exemestane and everolimus

I've been on this combo since May. I haven't had many problems. It was suggested to me to buy capsules off of Amazon to put the evermolimus in. It causes mouth ulcers. The drs say getting mouth ulcers is stystematic. They say it doesn't come from them touching your mouth. The literature says not to let people handle them bc it can pass through the skin.My feelings is if it can be absorbed through the skin then my mouth and tounge can absorb it and get ulcers. I believe it was size "00", that I ordered. I had ulcers one time but it also was after having a bunch of fever blisters. I think it was a virus. 

 

I have started to get concerns nail fungus and my nails are very thin and soft. They also break very easily. Sweets taste terrible. If I can think of anything else I will post it. FF

Member

Re: exemestane and everolimus

Hi I've been told I will be starting on E and E any advice and how successful have everyone found it at keeping things stable.  I have mets to colon and stomach lining.

Member

Re: exemestane and everolimus

Thank you Carolyn I will mention it.
Just hoping that this cold and cough doesn’t delay things. I don’t have a temperature so fingers crossed...

Member

Re: exemestane and everolimus

Hello Lynn
I went on a website where u could ask questions as to what criteria was needed for ibrance ...no age limit and only to ladies that have only had the one hormone ...but did read that ladies that have had chemo might get it on compassionate grounds. .
It's all very new so it's worth mentioning to oncologist. ..
Hugs xxx
Member

Re: exemestane and everolimus

Hello Carolyn and thanks for responding

 

the letrozole kept me stable for almost 5 years.

 

they did not mention Ibrance at all. I know nothing about it so I will do some research this evening and maybe mention it tomorrow

 

Xx

 

 

Member

Re: exemestane and everolimus

Hello Lynn
Welcome back ..yes it's been a while since u posted. .sorry letrozole has let you down after such a long time but e and e I'm sure will be fine too.
I'm 2 years into letrozole now and keeping my fingers crossed it's still working .
Have u not been offered ibrance as an option as I understand it can be prescribed after just one previous hormone has failed.
Hugs xxx
Member

Re: exemestane and everolimus

Good afternoon ladies I hope you don’t mind me joining in.

 

I have been told that I am going to start the E & E combination tomorrow.

 

I was diagnosed in Oct 2012 with primary and about  six weeks later they discovered the secondaries so a double whammy.

 

since then I have been on letrozole - with very few side effects compared to others.

 

my TMs started to go up about 6 months ago and I had a CT scan which showed some changes - in my peritoneal or bowel area.  I was going to start the EE combo last week but as I have been suffering from diarrhoea for a few weeks the Onc I saw wanted to discuss it with my regular Onc before I started, since EE can cause diarrhoea. I suffer from mild diverticulitis and IBS - she wondered if the changes which showed could be those two conditions worsening  - I have had them for longer than the cancer but they have always been manageable and not needed medication.  On first being diagnosed with secondaries I had shadows in my peritoneal area which I was told were cancer.  The next scan said they were almost completely resolved and then the next one said that they were no longer visible...the other worry is that they may be returning.

 

she thought a CAT scan might be worth doing for clarification.  At my appointment tomorrow she said that the EE would probably be prescribed so that hopefully it can start doing the job whilst they sort out the scan.

 

I am just getting over a cold and a cough and hoping that this won’t delay the EE further 

 

I have read through the whole of this thread and found it very informative - I am becoming aware of the SEs and hoping that they are doable, as the letrozole ones were.

 

I used to post on the forums quite often, but haven’ t done so for a while, although I have read them frequently.

 

 

Member

Re: exemestane and everolimus

Dear Ramade,
Yes I am planning in Dec. Fresh air and change of place does a lot of good. I hope you are feeling good and your pains have lessened. You have so much courage and I find that you can be calm and positive always. I have learnt so much from all of you. Thanks and hugs to all the wonderful ladies.❤
Member

Re: exemestane and everolimus

Srilata, so pleased for you. Now, if you feel well you can maybe have a week away somewhere lovely.

with many hugs

ramade xx

Member

Re: exemestane and everolimus

Dear Linda, We always wish that the treatment we are on will be effective as long as possible. Your experience with e combo gives me a great deal of hope that this will sustain me for some years. I also find this medicine aggreable . There is very little side effect. Earlier I used to travel a lot and I am missing that. If this medicine continues then I can plan some trips.Thanks so much for sharing your experience . Hope your new treatment is proving effective and you do not have any serious side effects. My best wishes ❤
Member

Re: exemestane and everolimus

Afternoon Srilata

Great news regarding results. I was this combo for 3 years 8 months so chin up you may have alot more time yet.

I found the combo great fortunately I did not have any major side effects and was able to go abroad on holiday.


Linda
Member

Re: exemestane and everolimus

Dear FF, Ramade, Linda
There is some silver lining , my scan results showed suspected mets in the nodes near right collar bone. Lung infection was not mets as the earlier scan report suspected. So my Onc advised that I continue with hormone therapy till there is some change. He will see me in Dec with another scan. Thanks to all of you for being there with me. Love ❤
Member

Re: exemestane and everolimus

Dear Linda , Ramade,
Thanks for your kind support. Happy to know that your new treatment is going on well. E combo probably doesn't work for long. I meet my onc with the scan next Friday for the next step. Hope this time it will work longer. Hugs Srilata
Member

Re: exemestane and everolimus

Morning Srilata

Sorry for my late reply I am not on the combo now I am on Cap tablets as last scan in August showed up mets in liver.

Hope the next treatment you are put on goes well. It is the uncertainty I don't like when treatment fails but I am sure there is plenty more options for you.

Take care
Linda
Member

Re: exemestane and everolimus

Hi Srilata and ff, love to you both, srilata-ff is right, fight! More treatments are in the pipeline, sorry about lung mets but don't worry, it's detected so they can get on top of it. Ff, crossed fingers for scans. They are waiting to see what my radiation has done before they decide what to put me on next. Awake most of the night because of steroids but I did read a good book instead of sleeping so something positive I suppose.

hugs to all

Bev xx

Community Champion

Re: exemestane and everolimus

Thanks Silrata! I was hoping my story would give you some fight!! I really thought the two times I was really sick and on O2 would be the end for me. It was very scary times. I can't promise you it will work that way for you or anybody else, but figure it gives hope. I will let you know how it goes with my scans. I don't know why but I kind of feel the drugs are failing. Was really hoping to get 3 more months. We will see. FF

Member

Re: exemestane and everolimus

Dear FF, you are an inspiration for me. Your kind reply about your experience has helped me to start thinking more positively. I was very depressed and almost losing the courage to fight. But now I feel better and strong . I will get to know my new treatment next Friday when I meet my onc. For the time being I am continuing the e combo.Your scan is due in two weeks my best wishes for your scan result. Hope you have good news. You will be in my thoughts, it would have been really difficult to cope with this without all of you. Love❤ Srilata
Community Champion

Re: exemestane and everolimus

Srilata, I did lupron injections first to shut down my ovaries. This didn't work and oncologist said no hormonal a would work for me. I did abraxane/avastin for 6 months was stopped bc of SE. Oncologist gave me a 10 month break and things kicked up again. Then vinorelbine (navelbine) for 5 years. When this failed my cancer went wild. Ended up with collapsed lung and 2 weeks of radiation. Lungs swelled from radiation which caused heart to act up and landed in the hospital. Sent home in O2! (Oncologist told me months later he though that was the end for me. That was 5 1/2 years ago. Swelling went down and my lung reinflated and I got off O2! I was then put on capcitibine, worked 2 years. Then gemcitibine for about 9 months and had a toxic reaction to it. Lungs swelled up and I could hardly breathe, ended up on O2 again.  Within about 6 weeks I was fine. That's when I stomped my feet, just about through myself on the floor and said I wanted to try ibrance/letrozole. Onc finally said OK but told me it wouldn't work for me. He retired! The combo worked 21 months!! Now have been on this "E & E 6 months. If it quits working I at least got over 2 years on hormonal. Gave me a break from chemo. I thought I would put my story out here again, so you don't panic over your lung mets. Also I wanted you to see that even when I had a problem and ended up on O2 I got off of it! I know we are all different, but it gives you some hope. One more piece of advice.When my lung collapsed years ago and the time I had the toxic reaction, I used An incentive spectrometer religiously!! My oncologist and pulminologist both told me it wouldn't help. That my lung was done and wouldn't reinflated. I read on line that it could work. The respiratory therapist said it could too. I did that thing probably 50 times in a row about 8x a day. Don't give up if you get scared!! Fight! FF

Member

Re: exemestane and everolimus

Thanks FF for your support and kind words. I have to wait till the pet scan results which will be end of next week. I have not been on chemo after my secondary diagnosis. It was only hormone therapy. Now it will probably be chemo. Whatever be the treatment i only hope it works for some time. Hugs❤ Srilata
Community Champion

Re: exemestane and everolimus

Srilata, I'm sorry. It is so heart wrenching when a treatment fails. When we are sailing along smoothly on a treatment we tend to let our hair down and move along with life. Then along comes the treatment failure and puts us in a panic again. This isn't an easy way to live. Have you had chemo? I did a few chemos and did very well on them. I actually had the worse time when I was on letrozole! Hope you get answers and a n we treatment quickly, so you can get your mind settled down! I have CT in 2 weeks and results 2 days later. Let me know what treatment they decide for you. Hugs! I will be thinking of you! FF

Member

Re: exemestane and everolimus

Hi Linda,Ramade,FF
Hope you are doing well. My e combo has failed to do its work . I have mets in lungs and some lymph nodes near my neck. Waiting for pet ct result and new line of treatment. I am really depressed and confused. Trying hard not to think negative . ❤srilata
Member

Re: exemestane and everolimus

Hi lyndyloo, srilata, ff, yes waiting for scan results is awful. Srilata, still waiting for radiation appointment hope it's not long because my left shoulder and arm are really quite painful. Just to add to srilata's comment, I think it would be very difficult to cope without each other, so a big thanks to all.

love and hugs

ramade xx

Member

Re: exemestane and everolimus

Hi Srilata

Yes thats correct. Have it every month. Been on it since 2014. No I don't have any major side effects apart from feeling more tired for a couple of days after I have had it.

FF I agree waiting a month is ridiculous. I often think if there was anything seriously found a delay in treatment could be really serious. Not long to wait now anyway Monday 11 Sept.

Hope your new job is going well.

Regarding scans I don't tend get them on a regular basis as such. Last one I had was March this year before that it was November last year.

Hugs to you all.

Linda
Member

Re: exemestane and everolimus

Dear Ramade and FF
I feel much better now at least for the next six weeks till the next appointment. FF you are quite right tumour markers are not dependable. Better to have a scan every three months.
Ramade, have you started your radiation? What has your doctor advised ? My onc said there are many lines of treatment and not to worry if hormone therapy fails.
Best wishes and thanks for being there always
.
Community Champion

Re: exemestane and everolimus

Srilata, That's fantastic news!! Glad the onc feels the tumor markers are nothing to worry about! I don't get tumor markers. Hugs!

 

 

Lindyloo, That is a long time to wait for scans. Mine are always compared to previous scan. It takes 2 days to get my results. I hope you get yours soon. I would be going crazy if I had to wait that long. Hugs!

 

FF

Member

Re: exemestane and everolimus

Srilata, so pleased for you, now you can relax again.

lots of hugs

ramade xxxx

Member

Re: exemestane and everolimus

Dear Linda
Thanks. Good luck with your scan. Yes waiting in the hospital is so tiresome. Is this denosumab injection that you have to take ? Hope you will not have any side effect. Let me know when you get your report. Love
Member

Re: exemestane and everolimus

Hi Srilata so pleased to hear your scans were ok and you do not have to change treatment. Will let you know when I get my results. Fingers crossed.
At hospital now waiting for injection. Running behind as normal. Usually here at least 2 hours shame GP cannot give the injections. Hugs Linda
Member

Re: exemestane and everolimus

Dear Linda, Ramade,FF,
My scan report was ok. So I continue with the same medicines. The rise in the tumour marker was probably due to some other reason
Thanks so much for your support.
I hope everything goes well for us.
Love and best wishes
Member

Re: exemestane and everolimus

Hi Srilata

Regarding.scans when I have questioned why the scan results take.so long I was told they had to look at my previous scans to see whether there has been any change. The longest time I have waited was 5 weeks.

Regarding tumours markers I do get them checked every month when I go for my injection. I used ask each month but stopped when they went over a 100. Yet again I used to query when they went up slightly. I was told they don't act unless they jump up by quite alot.

Good luck again for tomorrow.

Linda
Member

Re: exemestane and everolimus

Dear Linda and Ramade,
Many thanks for your support. Yes it is a roller coaster ride and so much uncertainity. My tumour marker went up from 170 to 430 so my doctor did not want to take any risk. Linda why does it take so long for your scan report to arrive . I understand your anxiety waiting fot the results. Good luck with your scan report and I pray that you remain stable. Hugs
Member

Re: exemestane and everolimus

Thanks Srilata, and I do hope your meeting goes well and you have good news.what an awful roller coaster we are all on.thinking of you and send big hugs

ramade xx

 

 

Member

Re: exemestane and everolimus

Hi Srilata so sorry to hear you are also having problems. Did they tell you what your tumor markers have gone up to? Least you have had to wait long to get your results. Hope they are ok and you can stay on the same treatment.

I had my scan 3 weeks ago and not had my results yet. Rang them up last week and I got an appointment for 11 Sept. It is awful the waiting around.

Good luck for tomorrow. Linda
Member

Re: exemestane and everolimus

Ramade,
I am sorry to know that the e/e combo has not worked. But I am sure there will be other remedies to try. We always count on the new medicines to work and keep us stable for some years. But if that doesn't happen there must be some other ways to control the progress. Radiation is very effective and I am sure you will respond well to the treatment. You have been so brave and determined. You will definitely do well . So don't worry and we are always there to share and support each other.r
I am sorry I could not reply earlier because this week had been quite hectic for me.I had a visit to my onc and because my tumor marker was going up, I had a scan and the report is due on Monday. I will have to visit my doctor again on Monday with the report. So if everything is ok I continue with the old medicines otherwise my doctor will change the line of treatment. I am trying hard to keep calm.
Lots of love and hugs for you and praying
Member

Re: exemestane and everolimus

Thanks ff and lindyloo for your kind replies. Its true I don't know what's left to take now but hope the doc comes up with something. I've never been on tamoxifen either but have had a lot of iv chemo that's for sure.i've been given some low dose lorazepam to take the edge of the acute anxiety, it worked, now I've stopped the weeping and feeling sorry for myself and instead feel a bit spaced out-much better!

hoping you last a long time on this treatment.isn't it weird that we have the same disease but each person reacts differently. Goodness it's a minefield.

have a good weekend,

ramade xx

Member

Re: exemestane and everolimus

Hi Ramade

So sorry to hear e/e has failed. It is always a worry when a treatment fails. I know back in 2014 when Letrozole failed I thought what next. I have been on e/e over 3 years now eventually that will fail. I have just had my 6 monthly scan which I am still awaiting the results. Think positive there will be a treatment out there that will work.

Hi Ff/Srilata hope you are both doing ok and the side effects are not getting done.

Hugs Linda


Community Champion

Re: exemestane and everolimus

Ramade, I'm very sorry to hear this. We wear our hearts on our sleeves when these  drugs fail. We count on each and every drug working on us to give us more life. We keep on truckin through life hoping and preserving, then when something fails we go running and want to hide with our tails between our legs. I don't remember what treatments you have had. Have you had a lot of chemos? I had quite a few chemists and this is my second hormonal. If this fails it's back to chemo. I've never had tamoxifen and she said it won't work for me since both hormonal were given with something else. She said a single agent win t work now. I will go back to chemo, but when I get down to no choices I will fight for tamoxifen.If you haven't had chemo please don't be afraid of it. I had more side effects from these hormonal than I did chemo. Each of us is different, but I had a long run out of navelbine (vinorelbine). My oncologist said he had many ladies do well on it. Few side effects and long runs. I got 5 years with it. Maybe, you could give it a try! I hope radiation is easy for you. Big hugs!! FF

Highlighted
Member

Re: exemestane and everolimus

Hi there  ff srilata. I have had some very bad news that the e/e combination that I have been taking has not been working and the cancer in bones has spread, I now have to have radiation to top of spine as it is pressing on nervesand sending pain across my shoulders and down my arms. I'm feeling sick with worry because I knew it would perhaps only work for a limited period

Not to work at all is devastating and I don't understand why- I couldn't ask I was trying to keep back the tears while I was in there. I don't know yet what they're going to give me next. What if nothing works? Sorry I'm in a real state.

ramade x

Community Champion

Re: exemestane and everolimus

No picture! Amish don't allow pictures!

Member

Re: exemestane and everolimus

Hi FF ,Ramade,
Happy to know that you feel better. FF that"s a huge catfish. Do you have a picture?
Actually my immunity system totally failed. So i have to stop everolimus and start on antibiotics
Lets hope this works. I have high fever and chest infection.
Love to all
Community Champion

Re: exemestane and everolimus

Ramade and Silrata, I'm still itchy but onc doesn't feel I need a dose reduction. I don't have a rash, but I have a lot of dry skin. I think this makes me itch. I'm still having post nasal drip and a lot of having to clear out my throat! Annoying but doable! My scan said stable with a few nodules shrinking. I thought the drugs weren't working. Post nasal drip is usually what starts happening to me  when a drug is failing. I guess this time it must be something seasonal causing it! I'm having a rough time going to sleep. I don't know why.  I walk around here in the evening, barely staying awake. I hit the bed and my mind won't stop! I lay awake for hours. When I do sleep I'm lucky if I sleep 3 or 4 hours. When it's time to get up I'm ready to sleep! I think it started with the stress at my old job, then the scans, and new job. I'm hoping this ends soon since I have my scan results and love the new job. Lol, now my mind has been on all the activity ideas that I want to create. 

 

Hope you both are doing OK and maybe even having some fun! Our budget is tight so no big vacations. We have been keeping busy with a lot of  small activities. We both have Thursdays off and enjoy going out and about on it because it isn't as busy as a weekend.  This week we went to a place called the Conowingo Dam. It was built to generate  power. They have picnic tables and people fish there. It us a great place to view Bald Eagles and osprey. We packed a picnic lunch, binoculars and our cribbage board. We saw 5 eagles and several osprey with fish in their talons. An Amish family was fishing and the father caught a 40lb catfish!  I won all 3 cribbage games!  Have to pick a place for this Thursday. Have a good week! FF

Member

Re: exemestane and everolimus

Ff, hi, well done on your new job. How did your scans go and how are you feeling generally.

srilata, good news for you, I am pleased. I am ok, chugging along, having a clearout.

love and hugs 

Ramade

Community Champion

Re: exemestane and everolimus

Thanks Srilata!!

Member

Re: exemestane and everolimus

Hi
Sorry I couldn't reply to your posts bc my mobile broke. The battery melted due to overcharging. Thanks for your support and the information was really useful. I had a check up today with my onc. He said there is nothing to worry now. But no iron supplement as I am taking calcium
FF Congratulations on your new job
Love and hugs
Member

Re: exemestane and everolimus

Ff, that sounds like good news. Good luck with your scan and results at beginning of August, I will be thinking of you. Sending good luck vibes to you and hugs.

ramade

Member

Re: exemestane and everolimus

Dear Srilata, sorry I have not replied before but the dog had chewed through both my battery chargers and I had to order more. So sorry you are having problems, I'm sure there is something they can do, this must make you tired I should think. You have done so well so far, having been on full dose for such a long time. If they can't fix it they might bring down the dose.I am on 5 mg now which haven't given me any side effects so far. Having a bone scan on Thursday, it seems it's quite difficult with bones to see how well it's working because the damage done to bones takes  long time to repair even on working medicine, so they look for spread.

let me know what they decide to do, you are so brave.

ramade