Hi Lynne,
I wonder if the new trial is for PD033291? I read a bit about this a few weeks ago and it is supposed to be a very good drug from previous trials and like the onc says, a lot kinder than evorilmus.
Hope whatever it is it works well.
Love Sheila xx
Hi everyone,
Just to let you know, the last time I went to see the onc I asked him if there was any chance he could let me know before my next appointment if there were any changes to my scan as my daughter always insists on coming with me for the results and it means her using up one of her days holidays. ( Iknow she will still insist on coming anyway)
He wasn’t sure that this would be possible but I didn’t really expect that it would be. However, I had just got back from swimming at lunchtime when the phone rang and it was the onc! He had rung because I had asked so I thought that was very good of him. He said that the nodules on my lungs were the same and there was no sign of anything anywhere else but a couple of the lymph nodes were slightly larger which could mean that the treatment was stopping working. He said that he wasn’t too worried about this at the moment and to carry on with the evorilmus but he would rescan me in 2 months instead of 3. I don’t know how to feel at the moment but I do feel that he is on top of things and I feel confident with him so will wait and see. I will still go for my appointment of course as I still need my bloods done so he will perhaps tell me more then.
Take care all of you.
Love Sheila xx
Well, I’m back on EE from today today as I feel a bit better. Have been on exemestane alone for a week and my joints have suffered. My loss of appetite after the appendix op is very slowly disappearing and I am starting to eat bland, ‘nursery’ fourfold. We will see what happens in due course…I do think the op knocked far more out of me than expected.
I hope you are all managing ok anyway.
Liz. X
Hope everyone is having a good day today and is as well as can be expected.
I’ve now been on EE for 2 weeks and the SEs are building. I take my tablets after my evening meal and for the last two days have had flu-like symptoms an hour or two after taking them; shivery, achey and exhausted… This lasts until I go to bed, but I’m fine again when I get up the next day. So I was just wondering if anyone else has had anything similar and, if so, did it resolve itself with time, or do you still get this with each dose you take?
Look after yourselves xxx
Hello Sheila, just saw your post today, haven’t been on a bit. Your onc. sounds spot on, so easy to make a call instead of having you hanging on weeks. It really sounds like EE is working doesn’t it, I know the lymph node question isn’t answered but could just be a reactive change and they’ll settle and won’t be showing on next scan. He’ s keeping a very close eye isn’t he and the best part of all is you well and doing everything you want. Keep heart, x
Angelfalls, maybe you could take it a little later and sleep through the reaction. In my experience so far SE come and go randomly as well as sometimes building up a bit. Keep going x
Good Luck Liz, yes I bet op has knocked things for a six , it would have done to anyone. Never mind extra hassle of breast cancer. I hope you start to feel stronger and stronger soon. Take care Kris x
Hi Kris,
Thanks for those words. I am keeping my fingers crossed! I will see the onc next Tuesday so maybe he will give me a bit more info then. I haven’t been on here for a few days.I have been too upset as one of my dogs died last week. I have been depressed andso has Peter my husband. Zena our other dog is also pining and is off her food though she seems to be coming round a bit. It has been awful taking her for her walk where we normally go but have had a few hugs and support from other dog owners who I have got to know over the years. Hope you are okay.
Liz I hope you are feeling better and that your appetite continues to improve.
Angelfalls, Hope you cope okay with the SE. Over the months I have had those symptoms of feeling “fluish” but they have gone the following day. SE are now much less but then you start worrying if the treatment is still working!
Love Sheila xx
Thanks, Kris and Sheila.
So sorry to hear about your dog, Sheila. We had to have our cat put down a couple of months back and I know how hard it is to lose a much-loved pet. Sending (((((hugs))))).
Last night I had the shivers and aches again and a temperature of 101 to go with it… So I called the trials unit today and I’ve been advised to skip today’s dose and go and get my bloods done tomorrow, so that they can check what’s going on. I hope this doesn’t mean I’m going to struggle to stay on this treatment…! It’s only been 2 weeks!!!
Have a good evening, everybody! xxx
Thanks for your thoughts Angelfalls. I am slowly feeling a little better and at least I can talk about her now without breaking down.
I’m sorry you haven’t been well again. I hope your bloods are okay and that things settle down for you. The SE are strange and they seem to come and go. I thought my sore mouth had gone for good but it is sore again this week. Not as bad as it used to be though. I haven’t had a nose bleed for a while either but today I have.
Take care. Love Sheila xx
Thanks, Sheila. My bloods are fine, so I’m going to try again tonight and see what happens. I’ve been reading quite a long thread on the American site and a couple of women have reported similar fevers and flu-like symptoms which just seemed to sort themselves out with time, so I’m hoping that’ll be the case for me, too… Our bodies just have to readjust to the new poisons, don’t they?!
The trials nurse did mention that everyone at my cancer centre who started this trial before me has had to reduce their dose, though, which is quite interesting as in the US, lots of oncs. seem to now be starting patients on a lower dose and building it up over time if they can tolerate it. Mmmm - that makes more sense to me. And sounds far more humane!!
Hope everyone is doing ok. xx
Hi Ladies,
Not posted for a while as I have been back at work full time but today we broke up for half term Yay!!
I’ve been on EE for 5 months now and find side effects tolerable most of the time. They seem to work in a monthly cycle for some reason (don’t know if this was affected ny the zometa which stopped 2 months ago - onc only gave 6 doses). My biggest problem at the moment is my nail - they grow quite quickly but are like paper and keep tearing at the slightest thing - also little bits of skin tearing below the nail, on the finger - only small but stinging - went in work with 4 plasters on today which the children found amusing.
The biggest thing is tiredness generally but in the big picture of things I’m still here and doing ok (I think - brain scan results next Tue).
Have a good weekend
Karen x
Hi everyone,
Not been on for a while but for good reasons. We went away for a few days and luckily I felt well the majority of the time and it has done me good to have a change of air. Come back much more positive! My daughter is coming over from England today too so that will be more positive incentive. I seem to need a carrot on a stick to keep me moving forward!
Angelfalls, I take my tablets first thing in the morning which is when they advised me as they said it had to be on an empty stomach and not eat anything for 30 minutes afterwards and I get the same effects as you on some evenings - flu like symptoms and a temperature - which disappear later or by the next day. I told my onc who does not seem too worried about it as long as the temperature is not too high and it goes off.
Sheila, so sorry about your dog. I have two cats (13 years old now) who have been such a help to me on my bad days, especially when I was in a lot of pain earlier this year. I dread anything happening to them.
Karen, you have made me think about going back to work. I just worry about the bad days and being there for a week and then needing days off again. I shall have to make some decisions soon about it but I think I’ll wait till after my three month tests in June when I know whether this EE treatment is working.
Hope everyone will have a good week.
Love, Gill x
Wow, Karen! You’re able to work full-time on this treatment?!! And in a school?!!! That’s amazing!!! I’m a teacher and have been seriously considering going for ill-health retirement, but you’ve made me think. Have you tried something like Sally Hansen’s Hard as Nails nail strengthener to see if that helps at all with your nail issues? May be worth giving it a go. Wishing you the very best of luck for the results of your brain scan on Tuesday. Fingers and everything else crossed for you.
Gillanne, Glad you’ve had a good break and now have your daughter’s visit to enjoy. It’s so important to have little treats to look forward to and keep us going. And big treats are even better! 
I haven’t heard of anyone being told to take these tablets on an empty stomach, or that it has to be first thing in the morning… Wonder if anyone else on this thread has been told that. And how strange that you then get the fever and chills some evenings… These SEs just seem to be all over the place! My onc has told me to stop taking the tablets if I get a high temperature again and I’m having more blood tests as well as lung function tests done this week, as she wants to rule out pneumonitis, which I know can be one of the nastier SEs with this combo.
Hope everyone can enjoy the long weekend and that we all get to feel a bit of sunshine on our faces. xx
Hi Angelfalls - will look for some nail strengthener and give it a try. I teach too in a Primary School - I have a mixed Year3 / Year 4 class. Am aiming to see how I do up to summer so I will have given it a full term and then see how I’m doing. Will then consider what options are available should I need them. I’m lucky too I have a supportive school :o)
Gill, I take my meds in the morning as I too was advised to take them then.
Although I get many se i haven’t experienced the flu like syptoms but do often have a runny/sniffly nose. Sometimes I don’t think there are many se’s because mine don’t all come at the same time. However one month I wrote them all down for onc and boy is there a lot!!
Hope you’re all enjoying the sun this weekend - that makes me feel better too.
Karen xx
My pharmacy told me to take them on an empty stomach,but not at any particular time so long as it was the same time each day.I did this for the first 3 months but as se’s got so bad I changed to taking after my evening meal as the instructions that are enclosed with the tablets say they may be taken with or without food.
Since changing the lower the dose 5mg I have had hardly any se’s, other than nausea and loss of appetite, but I do worry it may not be working.I go back to hospital next Tuesday for next months supply,so we shall see what the treatment plan is.RM want me to take part in a new trial but I would rather stay on e/e if it is working as the last scan results were promising. It has taken me some while to recover from infection and rads,have felt totally knackered.
Did have a good weekend as it was my grandson’s christening last week and out with my son for a lovely tea tomorrow as it is both our birthdays, just hope the nausea stays away and I can find my appetite.
Hope you have all had a lovely weekend with not too many se’s spoiling it.
Lynn xx
Sheila, I was so sorry to hear about your dog. Big Hugs. I know when I was having chemo the first time, one of my dogs comforted me so much. The times I was feeling utterly crap she would just sit on the end of my bed and just look at me quietly.
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
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
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