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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
oh what a shame it isnt working for you. how long have you been on it.
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
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
bumping for Sukiem
Lxx
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