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

zola
Member

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

Hi HelHel,
Welcome to this thread. I hope you have good success with this combo. I have been on it for twelve months now and it is still working for me. I still get mouth ulcers though not all the time. I can go weeks in between and think that I wont get anymore then one pops up. I have one under my tongue at the moment but it's not too bad. I have tried various treatments and to be honest I think salt and water are as good as anything but I use Difflam sometimes and at the moment I am using a steroid mouthwash called betamethasone which I got from the hospital. I think this is good if the ulcers are very inflamed.
Hope yours dont get too bad. I have found certain foods make them hurt more such as tomatoes (although these alright if cooked) My taste buds have changed but I can eat most things and my appetite is good.
Good luck, Sheila x

HelHel
Member

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

Hi ladies
i have been reading some of these posts with great interest. I am now into my 2nd month of evero/exemes and for the first time in over 6 months my CA count has come down. It's still extremely high at 999 but was previously 1136 so I'm grabbing at this and taking it as my positive path. The one I've been looking for, for months after 5 cycles of epirubicin failed to make any difference.
I had ulcers on my lips during the first month. Very attractive not! Now in 2nd month just one lip ulcer now fading but my mouth is so sensitive. DP made fajitas for dinner last night and there was no heat in them yet mine tasted like it was laced with a thousand chilli peppers!
i have been using diluted Difflam which makes my mouth numb for a time and was using Igloo but this wasn't what I thought it would be. Its gritty and yellow and looked even more hideous on my lips than the ulcers themselves. I did try Blistex which helped a little.
I don't seem to have any other SE's which is good.
Good luck to all of us out there on this relatively new combo and let's hope NICE approve it soon.
BTW, anyone in Wiltshire? Is there a group of secondaries in the area?
xxx

zola
Member

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

Lynne, sorry to hear the treatment hasn't worked for you. I hope the next one works wonders. Good luck.
Good news Valia. Hope the liver spot is just a blip and that it was already there. That would mean that you were at least stable with some regression wouldn't it.
I didn't mention NICE as it was a young registra that I saw but I will mention it next time I go.
Sheila xx

nicky08
Community Champion

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

Hi ladies, sorry to be dropping in on your thread but have just read some updates.
Sorry to hear that this combo isn't working for you Lucinda but that Capcitabine does. I've been on this for a few months now and fingers crossed it is still working for me even though I should have moved onto a different chemo - but that's another story!
Valia - glad to hear the bones are improving and hope that they can sort out the liver spot. Have you had RFA done in Hants? I had asked for it originally but was told I should have it when spots are smaller, may be looking at asking again.
Hope everyone else on here is doing well and the SE's are minimal.
Nicky x

valkeh
Member

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

Sheila-glad to hear your news. Great!
Lynn, I remember after I had a PET scan last year they detected a possible fracture in my L- hip , directly asked for MRI as it is more sensitive for the bone lessions. Good luck with your scan. I had a fracture and I had pins to stabilise the join.
I had my results today. As per PET report there is an excellent report to all the bone lessions! So very pleased. Liver doesn't behave excatly the same- a new spot but possibly it's the one I had RFA done before back in January. Bone markers all coming down nicely. Oncologist was very pleased and of course I was the same!!! Will see Interventional Radiologist again to discuss about potential RFA number 2 but at least there is a good response within the bones.
I spoke to Oncologist about NICE etc and he said he had already written letters to NICe as he thinks combo is one of the biggest discoveries for the hormonal breast cancer.
Hope you are all doing well on the combo.
Valia
x
lucinda
Member

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

Sheila so pleased you have had good results, Valia good luck with your scan. I should have gone to clinic yesterday but hospital changed my appointment to today to talk to radiology consultant, they have been having problems reading my ct scans so had to have mri . Got all my scan results today and it would appear that what they had previously thought was healing is in fact progression in the liver and also new hot spots in the pelvis so sadly combo not working, and probably has not been for the last 3 months. Just a bit sad that the time has been wasted, not to mention the cost. So am now having a break from treatment for 3 weeks so I can have rads to my hip and the starting capecitene(can't spell !! ).
Oh well onwards and upwards and hope for better results this time. Good luck to the rest of you on combo and long may it keep working for you.

Lynnxx

zola
Member

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

Hi Valia,
Hope your results are good! Be sure to let us know. Hope everyone else is doing ok. Had my results yesterday and after a year on the combo it is still working!!! Next scan October.
There was a lady at the clinic yesterday who was in her eighties and her daughter said that she had been going there for years. She had breast cancer in her breast, liver, kidney, lymph nodes and bones but was doing well on chemo and herceptin! She looked great and was in good spirits. Definately an inspiration!!
Take care everyone. Sheila. x

valkeh
Member

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

Hi Nicky and rest E/E girls.
Had the scan. I know I shouldn't complain but stay one hour still and then 42mins scan from top to toes and more stilness was not great fun... Anyway- all done now. Staff in RM are wonderul and very supportive. They thanked me at the end for coping with the scan! Well, it's me who thank them to give me the scan. Lovely people, really makes a difference. I see oncologist on Wednesday with the results. So no much wait but still stressful. Back to work tomorrow to get distracted and to do something meaningful.
How are you Nicky? How is your treatment going
I hope the rest of E/E gorls to cope with treatment sans SEs 🙂
Valia
x
nicky08
Community Champion

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

Hi Valia
Hope today goes well and you don't have to wait too long for the results, that's the bit I hate, not the scans themselves! Although they still get me worked up.
Hope everyone one else on this combo is getting on well with it, with lessening side effects and that its doing its job.
Nicky x

valkeh
Member

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

PET scan tomorrow after 3 months on E/E. Anxiety and stress are back... Trying to stay focus and calm. Thought sharing my feelings would help.
Good evening ladies. At least the nice weather makes our days happier and brighter.
Valia
x
valkeh
Member

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

I will check with my Oncologist too when I see him. I have my drugs through my private insurance but sickens me that they decided to take away something that works even for a small number of patients.
Angelfalls
Member

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

The Scottish Medicines Consortium haven't approved it either.

zola
Member

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

This is very unfair! I shall be asking my onc when I see him if there is anything they (or us ) can do about this. It has worked for me for a year now and the S/E effects, though not pleasant, have been manageable.
Love Sheila. x

Angelfalls
Member

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

I sincerely hope that those who are already on Everolimus will be able to continue to take it, but I haven't seen anything to say this will be the case or not. Perhaps the oncs will have some information...

I also hope that the trial I'm on (the only way to get the drug in Wales), will allow Novartis to identify markers which will help predict who will benefit. That in turn should build an even stronger case for the drug to be approved and this sickening decision to be overturned.

valkeh
Member

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

Once again money talks....
Not sure what they expect us to do.... Upseting news.
lucinda
Member

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

I am so devastated by this announcement. I know that NICE were not happy that some patients had found it a treatment which was hard to tolerate, and the people involved had asked for longer to trial at lower levels and for a longer period of time. As usual the only reason they have actually declined to licence it is COST.
I can see no point in drug companies spending so much time and money developing these drugs if no-one can get access....I really hope they do not look at it that way.
As I got my funding via the drugs fund that is another kick in the guts that that will no longer be available. I have had good results on this combo and am hoping I will continue with it as long as possible, but I am upset that other people will not have the option of a drug that works.

Lynn xx

Angelfalls
Member

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

I'm sure many of you will already have heard that NICE has not recommended Everolimus / Afinitor to become standard tx for those who might benefit from it. Another kick in the teeth for those with secondaries and maybe time for another Herceptin-style fight...

The following link is to Breakthrough BC's response to the announcement:

http://www.breakthrough.org.uk/news/all-news/nice-afinitor-decision-breakthrough-responds

And this is BCC's response:

http://www.breastcancercare.org.uk/news/blog/our-comment-nices-decision-not-recommend-afinitor-everolimus-be-available-patients-nhs?utm_source=Media_centre&utm_medium=press_releases&utm_campaign=Our%20comment%20on%20NICE's%20decision%20not%20to%20recommend%20Afinitor%20(everolimus)%20to%20be%20available%20to%20patients%20on%20NHS

zola
Member

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

Liz, I am really pleased for you and hope the good results continue. Good luck with your results Lucinda.
I had my scan last Thursday so will let you all know if the results are good as last ones showed iffi lymph nodes in the lungs which may or may not have been a blip. We shall see.
Anyway, I thought I was over the S/E but this week I have had fatigue, (so I am hoping you will have some tips Angelfalls) I have got spots on my face and a sore tongue!! Here we go again!
I may not be able to get on this site for a couple of weeks as my computer is faulty and it has to go back to Sony so dont know how long it will be but good luck to everyone and will get on here if I can.
Love Sheila xx

lucinda
Member

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

Liz so pleased to hear your news, you have done well to stay on the 10mg dose. I am still waiting for my last scan results since being on the lower dose, and am now waiting for a bone scan to try to to work out the reason for pain in my left hip ( I have just had rads to the right pelvis). I don't really feel up to another session of rads at the moment.
I have been told I can start a new trial if the everolimus stops working, but I am hoping the scan results will show reduction.

Angelfalls will be interested in any tips you have, I seem to be totally knackered most of the time recently, other than that I feel well.

Lynn xx

Angelfalls
Member

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

Fantastic news, Liz! And long may it continue!!

I started a Fatigue Management course (run by my cancer centre) today - 2 hours a week over the next 4 weeks... If they come up with any amazing tips as to how to deal with it, I'll be sure to share!

lizcat
Member

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

Hi girls,

Just to let you know I have been for monthly check up, scan results and collect next lot of pills. Good news - all appears stable and the couple of dodgy areas in my lungs which may have been infection, have gone. The registrar seemed very pleased and she has done a paper on everolimus so it must be good news!! Back in a month again as routine.

Hope you are all as well as possible. Oh and I am still on the 10mg dose and it is only the fatigue at the moment that is affecting me - bit of a bugger that one as rest appears to be the only thing to help and I want to be back to having more energy. Perhaps in time...

Liz x

valkeh
Member

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

Zola, thanks for the tips.
Good luck with your scans! I am having mine on 22nd and results on 24th. 3 months check to see if E/E works for me...
Best wishes to all the E/E girls ( and boys if any?..)
Valia
x
zola
Member

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

Thanks Suzy. Saw the onc yesterday, or rather registrar. Nothing to report really but he said that my bloods were good so I suppose thats something. Scan in one week but I suppose I will have to wait until 23rd of July for results.
Hope everyone is okay. xx

sbrill
Member

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

Thanks Sheila. That's all encouraging to hear and I'm hoping things will calm down as my body gets used to it. I will definitely try Oral B toothpaste so thanks for that tip. Willing to try anything now. I don't want to have to stop taking the drugs as know the alternative will be far worse so will persevere. Best of luck with your scan.
Suzy xx

zola
Member

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

Hi sbrill.
Sorry you have had to join this thread but you will find it very helpful I hope. I have been on E/E for almost twelve months now and the SE are definately not too bad now. I had mouth ulcers very bad at first and used all sorts to help. Corsadyl was one of the best but it did cause my teeth to be stained. The dentist cleaned them up and advised me to use Oral B toothpaste. I have been doing for about 5 months now and dont get a sore mouth. Maybe SLIGHTLY now and again but nothing bad. I dont know if it is the toothpaste or just that everything has settled down a lot now.
I see the onc tomorrow and have a scan on the 4th July so will see if it is still working. I hope it is as I can cope with the SE I am getting now.
Good luck when you see your onc next week and I hope everything will be clearer.
Love Sheila x

sbrill
Member

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

Thanks Lucinda. I am trying the Corsodyl now and hopefully things will improve. Maybe there is also an option for me to reduce the dosage if the s/e get too bad. We will see. Great news that your last results were good, I hope the resukts you are waiting for are also positive. take care and thank you again xx

lucinda
Member

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

hi I did reply to ypur original post.I was told to use salt water/corsodyl and take disprin for the painAlso use a baby toothbrush and toothpaste.I find the se's come and go..some months I get one thing and another month another.
I have had my dosage reduced to 5mg and the se's have become much less and manageable so maybe that is an option for you.
Have you had any other hormone therapy.Mostly oncs use everolimus to make the hormone therapy work,especially if the one you have been taking has failed.I was given it because I had progression and spread to liver whilst taking letrozole.
Hope you get some answers when you see onc.To date I have had good results on e/e but I have spread to liver and bones.Could be they are trying this instead of more chemo to see if it works.Hormone therapies often work as well,sometimes better,than chemo.Chemo has never really worked for me but I have had good results from hormone therapy.My last scans showed an improvement in bone and liver mets..just waiting for results of scan I had yesterday.I did find the first month on e/e the hardest.
Hope things improve for you. Lxx

sbrill
Member

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

Hello everyone. I am so pleased to find this thread on E/E. I started taking it 2 weeks ago and after just 4 days, developed the most severe ulcers on my tongue. My bathroom resembles a small pharmacy with all the lotions and potions the docs have given me and I feel like I should get shares in Boots with the money I have spent but they don't seem to b getting any better. My coping mechanism at the moment is to gargle with Difflam and then Iglu to protect them and give some respite!
I too have the sore bumps on my scalp and have been given Hydrocortisone for them and another major s/e I have is crippling pain when going to the toilet as it seems the mouth like sores have also developed down below!
I am only 40 yrs old and sometimes feel like an 80 year old women. I only got married 2 years ago and can't even kiss my husband!! I am confused about my treatment on E/E as having developed a recurrence of breast cancer last September and successfully treated with 6 months of chemo, I had a couple of MRI's, CT's and PET scans which showed I was in remission and then my PET last mth showed subtle traces back again but only in the original site so I have no spread anywhere else in my body. I am unable to have radio as I had it the first time I had BC and surgery isn't an option but my concern is that I have no idea how long my Onc expects me to stay on these drugs. I haven't seen her since I got the scan results but reading up on it, as the everolimus just stops it growing, I am worried that they aren't trying to get rid of it once and for all!
Im seeing Onc on 2nd July so guess my questions will answered then but just want my life back and to feel normal again!
Hard to stay upbeat and positive all the time, apologies everyone x

lucinda
Member

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

bumping for Sukiem

Lxx

zola
Member

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

Hi Gill,
Sorry to hear that E/E isn't working for you. I am sure they will find something better and hopefully with less side effects. Good luck. I have a scan in two weeks which is a bit earlier than usual as the onc said that although my lung mets seemed stable I had 2 lymph nodes slightly enlarged and he wants to make sure that the combo is still working for me. He isn't too worried at the moment but if the scan shows more enlarged lymph nodes he will change the treatment. My S/E have settled down a lot except for my nails which are awful!
Hope everyone else is doing ok. Love Sheila xx

Brighton-Belle
Member

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

hi, glad to know i am not the only one with sore spots on my scalp. i missed the post with suggestions to help,. would be very intrested to hear what they are. many thanks
Brighton-Belle
Member

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

oh what a shame it isnt working for you. how long have you been on it.
Gillanne
Member

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

Hi everyone
Haven't written for a while as have been a bit depressed.
Unfortunately my three month tests have shown EE is not working for me. My bones are worse than before and at the moment I am off any treatment pending CAT scan results next week to see what I go on to next. I don't actually feel too bad at the moment although I am getting more pain in my back and legs again but at least a couple of weeks off any treatment will give my immune system a chance to recharge.
I'll let you know what my next treatment is and then join another thread for people on that one.
I am sure I am just a one off and EE will be working for all of you so good luck with everything.
Love,
Gill x

valkeh
Member

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

Hi girls,
Karen, I have to say the bumps/spots in my head are not itchy at all. They were painfulbut not itchy. They have all gone now... Bizzare signs.
Karin, thanks for the tip. I will certainly have a look in the web to buy one.

Hope you are all keeping well.
Valia
x
kmolle
Member

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

Hi ladies,
This is my first post on here, but I just felt I had to share with you all my mouth ulcer epiphany... I started on e/e before christmas and had horrid mouth ulers - one the size of a 20p inside my cheek. I did some googling and discovered that there are people who just seem to get horrid mouth ulcers as a part of life, but that many of them seemed to have been helped by switching to SLS (sodium lauryl sulfate) free toothpaste. So I bought some called Squigle online and the awful ulcers cleared up and none replaced them.
Then being rather vain as my teeth had gone a bit yellow with all the Corsodyl I was using, I started using a normal whitening toothpaste again. Bang huge mouthulcer... So I'm now back using the Squigle and so far I've not had a mouth ulcer since February. Sulphate free toothpaste might not work for everyone but it's worth a shot.

Karin x
kmolle
Member

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

Hi ladies,
This is my first post on here, but I just felt I had to share with you all my mouth ulcer epiphany... I started on e/e before christmas and had horrid mouth ulers - one the size of a 20p inside my cheek. I did some googling and discovered that there are people who just seem to get horrid mouth ulcers as a part of life, but that many of them seemed to have been helped by switching to SLS (sodium lauryl sulfate) free toothpaste. So I bought some called Squigle online and the awful ulcers cleared up and none replaced them.
Then being rather vain as my teeth had gone a bit yellow with all the Corsodyl I was using, I started using a normal whitening toothpaste again. Bang huge mouthulcer... So I'm now back using the Squigle and so far I've not had a mouth ulcer since February. Sulphate free toothpaste might not work for everyone but it's worth a shot.

Karin x
karen12
Member

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

Hi Ladies,
Lynn - glad your scan was ok. My scan was stable after 4 months on e/e. I only had 6 zometa as that is all my onc seems to go for. I too have a ct scan later this month.
Valia - I have had these spots since the beginning and my head gets SOOOOO itchy with them. I also get 2 or 3 of them on my face and they reappear in the same place each month. I don't do anything with them - they just come and go as they please lol.
I finally went to my gp last Monday as what I thought was the usual runny nose (se) wasn't improving and I had an awful headache. Turns out I had a temperature and sinus infection and was prescibed amoxicillin (have had these over the years with no problem). She also advised to stay off work and rest this week - I was glad I did stay off as Tuesday afternoon I started with the most awful S and D I have ever experienced. Turns out it was a reaction to aother meds - on Wed the gp changed my antibiotics to non penicillin ones. Have seen improvemnt as the week has gone on. Had a headache and pain at back of neck for 24 hours though which is why I finally got up now for paracetamol and coffee. Sorry to be long winded - just felt a bit sorry for myself this week.
Hope you are coping with the heat and not getting too much sun. have a lovely weekend
Karen xx

valkeh
Member

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

Hello girls,
I developed one more SE 😞

On my head - scalp- appeared different sizes, a bit painful pimples. Not sure what skin reaction is but it is certainly abnormal. The small bumps are all over my head. An eruption is starting as small lentil size and it can grow up to pea size. then is gone. Another one in a diferent location on the scalp will appear later. How strange!
Anyone has similar problem?
Gill and Lyn hope you feel better now
All the best to all the girls here
Valia
lucinda
Member

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

Hi Gillanne can sympathise with the sickness,I spent most of Saturday night being sick and Sunday in bed.My ribs were so sore from the constantly being sick....even water set me off.I have the opposite to you as I have constipation caused by the morphine.I have felt nauseus all week and have taken loads of anti sickness meds. I don't have any other se's at the moment,apart from the fatigue but I have had that pretty much constantly for the last 4 years.I have ct scan at the end of the month (after 2 months instead of 3) to see how the lower dosage 5mg everolimus is working.
I did get my bone scan results last week and it stated there was improvement to mid and lower spine,this is the first time any improvement in bone mets has been reported since dx in 2009 so I was sooo pleased.I have been on zometa for about 18 months and switched to denosumab 3 months ago ( no 3 tomorrow) and had been on ibondronat previously.Don't know if the good results are due to the zometa or e/e but something seems to be working.

I have read some posts on the bone/liver thread about Perjeta, the ladies who are taking it seem to be having it alongside herceptin.I think it did well in trials and has only recently been approved by NICE.

Hope you are feeoling better and scan results are good,

Hope all e/e ladies are having a good week.

Lynn xx

Gillanne
Member

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

Hi everyone.

Had bone scan this week after three months on EE - results next Tuesday so fingers crossed all is going well or as well as can be expected!

I had thought I was coping and getting over most of the SEs but over the last week I have been feeling rubbish. Sickness and diarrhoea and just feeling generally down and exhausted. My head wasn't working properly and I couldn't concentrate on anything. I spent Monday mostly in bed. My legs have started to hurt again which cannot be a good sign.

Anyway sorry about the moan, I am feeling much better today!

Does anyone get pains in their big toes and fingers and toes generally? This has been getting worse for me recently.

Also has anyone heard of Perjeta? I saw a TV programme the other day about this supposed alternative treatment.

Hope all are having a good week and take care.

Love, Gill

valkeh
Member

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

Hi girls. Quick update and catch up. Doing ok at the moment. Oncologist gave me a Px for gelclair oral gel. It seems very helpful. I didn't have mouth ulcers atthe time I saw him but small, whte spots on my tongue- very very unpleasant and uncomfortable. The gelclair helped a lot I think! Fingers crossed.
Sheila, thank you for the encouraging message. It's good to know positive stories that bring some hope.
Stay well girls. Take care all of you
Valia
x
zola
Member

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

Valia,
I am sorry to hear about your dad. I hope he is okay. My brother had a tumour in his bowel 8 years ago and he is still fine. He had chemo and has had no problems since.
Love Sheila xx

karen12
Member

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

Hi Girls,
Hope you're all having a good (and pain free) weekend. Valia it's a relief when you get a day without mouth ulcers - I have found these days become more frequent and the ulcers are lasting about half the month now. I am still having small nose bleeds but really bad stinging in my nose which on some days seems to reach my eye too (only one side though). The s/e and how they affect us are strange but so long as the meds keep working I'm sure we will all try to stay positive and manage them.
Liz - glad to hear you're still on the mend even though it isn't happening as quickly as you would like??
I can't believe how tired and achy I am all the time - I think it's hard to understand when you don't actually feel 'ill'. Anyway moan over (have been a bit up and down this week)- thanks for listening.
Karen xx

valkeh
Member

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

Thank you Liz. You are very kind. I wish you all the best with the scans.
It's my 1st day since on E/E without mouth troubles! I don't think it is not working ( well, I hope at least) but I think our bodies get used to the drugs. That is my optimistic side 😉

Hope everyone enjoys the sun today.
All the best for now girls!
Valia
x
lizcat
Member

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

Hi all,

Valia - sorry to hear about your Dad and the difficulties you are all facing. It's hard when your parents are ill.

My recovery is still going slowly but I am getting there. I never realised how much it would take out of me but then have heard the usual horror stories of people who had appendix out and then had problems, even when they were healthy. Have had some lovely bunches of flowers to cheer me up which has been most unexpected but very welcome. I have a ct due next Wed and then my next month's e&e. Since being back on then after my op, I have had very few side effects so now think it may not be working!! Can't win..... Not sure if the ct results will be in before I go for the e&e on Thurs but am sure someone will be able to find out something especially as it is clinic afternoon. I'm still really tired but am not sure whether that is due to op, the morphine or the everolimus. Might try to reduce the morphine dose to see if am any brighter but still pain-free.

Anyway, that's all from me. Hope you all keep as well as possible and the side effects are minimal.

Love to all, Liz x

valkeh
Member

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

Great news Karen. I also had a brain scan 1 month ago and I was petrified until I got the results. I also had tiggling sensation but in my lip and numbness in the bottom half of my mouth. I think it was all due to Xeloda that I was on at the time. Unfortunately not only had the side effects but Xeloda didn't work for me and I am know on E/E. I saw my oncologist yesterday and I had another supply of Everolimus 10mg.Mouth ulcers slightly better but tongue still sores 😞 The plan is to have a scan after 3 cycles.
Sending lots of love and cyber hugs to E/E girls. Some sad stories about your dog/ appendicitis etc. I really hope you cope OK girls. Life keep throws us big challenges... I haven't been on line for a while as I was with my dad who suddenly became very poorly and sick with bowel obstruction. Unfortunately due to a tumour 😞 My poor dad was so healthy and fit until now. He is 79 and he looksafter my mum who is almost blind. Well, I am pleased that heis still with us so I keep seeing the positives.
Take care girls
Valia
x
karen12
Member

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

Hi Lynn & Sheila,
Hope you're both ok. My brain scan is clear Yay but onc still concerned about tingling I am getting so am now waiting for a date for ct scan. I've just got my 6 month supply of E/E and am still on 10mg dose. Scan after 4 months onE/E but 6 months on zometa was stable. My onc only does 6 zometa so am just on E/E and anti-sickness.
Take care
Karen xx

zola
Member

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

Hi Lynn,

I went to see the consultant on Tuesday also. I also am having scan one month early as there were two lymph nodes very slightly enlarged on the last scan so they want to see if the treatment is still working. The reg I saw said that they weren't too worried at the moment as lymph nodes go up and down and they were talking millimeters. If they are any bigger or if there are more enlarged ones they will change the treatment.
I am still on 10mg and feel okay most of the time.
My nails are still terrible too and if I dont have anything on them they are just like yours sound Lynn. I have to cut them so short that they look like I chew them but I the false gels etc do seem to protect them. The last ones I had were very poor though and I am going to take them off today and see how things go. Take care and I hope your next scan is good.
Hope everyone else is feeling ok. Sheila xx

lucinda
Member

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

Went to hospital yesterday and have another 4 weeks supply at the lower dose, but am having scan after 2 months rather than the usual 3 to check how well it is working.
Had an interesting conversation with registrar, she said they have very few patients on the 10mg everolimus and most have switched to 5mg.
Sheila I have given up on my nails,I have them cut so short it looks like I have chewed them off.If I grow them at all they just split and tear off down the cuticle...so sore.

Hope you are all coping well.

Lynn xx

zola
Member

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

Karen, Good luck with your scan results Tuesday. I have still got problems with my nails and had gels done last week. I thought I had had gels done a few months ago but being a total newby with having anything done to my nails it was actually acrilics I had had done apparently! Anyway, the gels were no good. Still keep breaking etc so am going to go and have acrilics done again but short ones. They do protect your nails and if I have short ones, hopefully I wont keep catching them!
Hope everyone else is coping ok. Glad you had a nice break Gill. My next door neighbour's cat is 18 and fit as a fiddle by the way. Hope yours are fine for a long time yet.
Take care Sheila xx