Hi all
I went for scan results today but not quite what I was hoping for, seems I have anaemia,inflammation of the lungs and the liver results inconclusive…the liver legions are showing up larger which either means they are dead tissue or it is progression! I had to have a chest x-ray and another bone scan.I am having a week off all treatments,especially to allow the mouth ulcers to heal,and the going back next week after the scans have been rechecked and the chest x-ray scan has been looked at. I have the option of switching to a new trial,having weekly chemo or continuing with e/e on a reduced dose.Wiil discuss it with onc next week and meanwhile have a week off treatment.On the up side tumour markers are down.
Mags congratulations on you results, so pleased for you…it was worth persevering and no more back pain.Enjoy the sunshine.
Really sorry the results were not what you expected or hoped for, Lynn. I have been warned that anaemia and lung issues are side effects (yet more) of the everolimus and to watch out for shortage of breath and wheeziness so perhaps that could be part of it??? I do hope you get better news next week.
Hi Lynn, sorry to hear scan news isnt what you wanted to hear but not definate so try and keep positive until next week. will keep fingers and toes croseed for you. love mags x
Hi Lynn - That’s not what you wanted to hear I’m sure but hopefully after re examining the scans the news won’t be so bad. Make the most of the week off, it makes the world of difference - as I found out recently when I had an extra week between Xeloda cycles to get my biopsy done. Is that an option for you, by the way, to see if your receptor staus has changed? Fingers crossed there is better news next week.
Mags - good for you, that’s great news - sorry I can’t add more but a new page has started and I can’t read back!
Keep strong e/e ladies, thinking of you.
Nicky x
Hi Lynn, Sorry your results weren’t very good but the scan of your liver wasn’t positive so maybe it is just dead tissue. I really hope so. The fact that your tumour markers are down is a positve sign so go with that until you hear different.
My bloods improved after a while. I wasn’t told I was anaemic but the onc told me that my HB had improved on one of my visits making me think perhaps that they had been low before. I eat a lot of beetroots. They are supposed to be anti breast cancer and I think they are good for your blood as they contain iron and for lowering blood pressure.I hope that the news is good next week but if you were to go on a trial did your onc say what it would be on? I have seen something on an american website about trials with a drug called PD0332991 which seems to be having even better results than evorilmus and is supposed to be kinder. If you google it you will find a lot of info on it. I know it isn’t available yet but they might be staring trials you never know.
Fingers crossed for you for next week Lynn. Thinking of you. Love Sheila xx
Well what a difference 24 hours can make,was really down yesterday and worried things were progressing.Just had a call from my oncologist telling me she had asked the head radiologist to check my scans as she felt that they were not conclusive.It has been decided that the tumours are not actually growing but that what the scan is showing is dead tissue…SO TREATMENT IS WORKING!!! MY x-ray was also clear so it is thought I have a chest infection.
I am however going to have a lower dose of everolimus as they feel the high dose is too much for me to cope with re mouth ulcers and the skin rash.
So much happier today.Sheila I do eat beetroot,really like it,and things like spinach lots,green veg,homemade veg soups.Just never managed to get into juicing.I also try to eat things with iron like eggs,beans as I have always been borderline anaemic since having tax which really hit my immune system and bloods.I have also been told by my gp to sing…apparently good for lowering bp.He has not heard me sing!!
Going to celebrate with a glass of red and chocolate pudding.
That’s fab news Lynn How great to have an oncologist who’s on the ball and putting you out of the misery of waiting another week. Enjoy the wine and chocolate, you deserve it and have a singalong at the same time
Nicky x
Hope you ladies are all ok. Just been on chat but got booted off! Nice to see some of you there.
I’m just bumping this really as no news until I see them in clinic for routine monthly appointment on Thurs. Will report back but I am feeeling better these days.
Hope you ladies are all ok. Just been on chat but got booted off! Nice to see some of you there.
I’m just bumping this really as no news until I see them in clinic for routine monthly appointment on Thurs. Will report back but I am feeeling better these days.
Hi everyone,
Glad your feeling better Liz and hope all is okay at the clinic today. Hope everybody else is feeling okay too. I have nothing to report really except that yesterday I had a really nice day. Went swimming with my friend then went shopping with some M&S vouchers I had. Then after tea I felt crap! Every joint seemed to hurt and I felt shivery and tired but could not sleep when I went to bed so very tired this morning. Had a kip after I had had my breakfast and feel fine now. I know the exemestane affects your joints and I have had painful joints before because of this as I did when I took Letrosole but last night they were terrible. Has anyone else had any problems like this?
I go to clinic next week but my scan is the week after so I will have to wait 3 weeks for results I suppose.
Take care all of you. Love Sheila xx
Reporting back! Saw the same registrar as last time and she was very thorough and knowledgeable again. She is satisfied that I am tolerating the side effects well, especially as it’s still the 10mg dose. I go back in 3 weeks, then hope to make it on holiday and have a scan after that. So all in all, I think that’s good news.
Sheila - my mum had terrible joints on aromasin (worse than on tamox and arimidex) but she has arthritis. She came to the end of 10 yrs from diagnosis and came off them and her joints, whilst not right as they never will be, have improved quite a lot.
I have done some retail therapy at M&S and then bought a new washing machine so it’s all excitement here!
Hi Liz, Glad things are good and you can carry on with E/E. Hope you are getting able to tolerate it now. I have had a couple of days were I have felt very well! More lively and been shopping today without feeling shattered at the end of it. I had a spend too. New shoes. And I had my makeup done on the Estee Lauder counter at Debanhams.Due to a bit of pressure from my daughter but I enjoyed it.
I will be at clinic on Tuesday so will let you know how it goes.
Take care. Love Sheila xx
Liz, I forgot to say thanks for telling me about your mum. I’m sure it is the Aromasin but I dont mind putting up with the sE if things are working. Just tried to edit my last post but something went wrong so if you see this message again dont be surprised!! Sheila x
Hello ladies. I would like to join the group as I am due to start the E/E on Wednesday. Recent PET scan showed increased activity in bone mets and slightly hotter liver lession. Oncologist suggested Taxol or E/E. He decided to give me E/E for 3months and we will see. I have been on Capecitebine since August but very sadly as I tolerated really well stopped working for me. Initial diagnosis early 2011 ER+ tumour. So many ups and downs. I really hope this treatment to offer me some stability and tumour shrinkage.
Valia
Liz pleased to hear you are now tolerating things.Sheila so pleased you had a few good days.
I was due to restart treatment last Tuesday but was admitted to hospital with a 40 degree temp and a urine infection.Seems i also had a chest infection,so have spent the 4 days attached to a drip with anti-biotics.Now home so back to rads on Monday and hopefully restart treatment next Tuesday.
Valia hope e/e works for you.
How great to have an oncologist who’s on the ball and putting you out of the misery of waiting another week. Enjoy the wine and chocolate, you deserve it and have a singalong at the same time 
