Hi Sheila, lovely to hear from you. Not long now til your next appt. everything crossed for you.
Glad you mentioned fatigue is to be expected, I’ve just spent the weekend in London visiting my daughter and it was great fun but at times a bit of an endurance challenge. Plus despite chewing and drinking ginger til it comes out of my ears, my mouth is really sore on one side so eatings difficult. But I’m still very excited to be on Everolimus and I have my markers checked in 2 weeks. Have you heard of a fruit called sour sop? I’m looking into it. Take Care Kris x
Hello ladies,
My mum is due to start Everolimus soon. We have a clinic appointment tomorrow so I am busy researching things to ask the Onc! I was wondering how often you have scans to check for any progression or changes? This is something I am keen to get sorted as so far hormone therapies haven’t really worked for my mum, and if this doesn’t either we want to find out as soon as we can. Clare x
Hello Clare, just seen your post. Everolimus is a fairly recent breast cancer treatment to the UK. My understanding is, that its being used when the usual hormone blockers like Tamoxifen, Letrezole etc etc have failed. I have just started treatment and am being monitored with monthly blood tests to measure tumour marker levels and 3 monthly scans. Good Luck to you and your Mum. Kris xx
Hi Kris,
Glad you had a good time in London. I bet London is tiring whatever your health but I am sure it is the evorilmus. I have some days when I am more tired than others. I also think that daughters tire you out too! If I go shopping with mine I leave her to it sometimes and go and get a coffee especially if she sees a T K MAX. I never seem to see anything I want in there but she loves it.
I’m sorry to hear about your sore mouth. Mine is a lot better but still not right. I am carrying on with the mouthwash but not as many times a day and I will still carry on with the ginger tea because it may stop them getting worse than they are and it does have other benefits too doesnt it? I seem to get spells when I dont have any ulcers and then they come back.
I have just googled sour sop briefly and it looks like it is an exotic fruit but I think I have read that you should avoid exotic fruits while you are taking evorilmus so I might give that a miss unless I remember to ask the onc next week.
Anyway, I hope your mouth doesnt get too bad and thanks for the good luck. Will keep in touch. Take care. Sheila xx
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Hi Clare,
Just to say that I have 3 monthly scans like Kristine but my first scan was after 6 weeks and showed some slight regression which was great. They have since been 3 monthly and have shown stable so am waiting until next week when I should have results from the scan I have this Friday. Will keep you posted. Good luck. I hope your mum has success with this too. Take care. Sheila x
So far I have been on Everolimus and aromasin for 19 days but have started itching with littlbumbon arms arms and llegs has anybody else had this side effect and what do you take???
thanks
Amanda
Hi Amanda,
I havent had any itching but if you have a breast cancer nurse why dont you give her a ring. She may get in touch with the onc if she cant advise you herself. When I started with a sore mouth I rang mine and she was really helpful.
Hope you get it sorted. I know there are anti histamines but I think you are better off finding out if you can safely take these first. Hope you get sorted and that you dont get many other side effects.
Take care, Sheila x
Hi Kristine,
Well, GOOD RESULTS today! No new signs anywhere and no increase in size to the nodules on my lungs. Also, I have had a small nodule under my arm since last June or July and this has actually reduced slightly in size. Brill! I mentioned about my mouth ulcers as the bad ones have gone but I have started with another one so they have given me a steroid mouth wash to try.
All in all, a good day. I think it calls for a glass of wine! Take care. Sheila xx
Yeeaay !! x
Thanks Kristine. I must say, I feel a bit like that at the moment. I know its not magic but anything that helps is welcome! Just going to get my nails gelled. They have gone really soft and break easily. Another SE I think but not to worry! So long as the treatment continues to work. I hope your scans are as good when you have them.
Hope everyone else is coping with the evorilmus too.
Take care. Sheila xx
Hi ladies , I am looking for some advise / support for my sister. She is on halaven at the moment but her recent tumor marker c15-3has just gone up again after going down for the last 3 months.Her cea has gone down 2 points. We are concerned that this chemo is no longer working and feel the oncologist may want to change. My sister has been on several different chemos over the last 18 months. We would therefore be interested in affinitor as her next treatment if required ,but don’t know if it is available at our local hospital. Can I ask where you are being treated or what we should ask for. Best-wishes to you all. Xx
Hi flo12, sorry to hear your sister’s treatment may not be working. I am on my 3rd month of everolimus (afinitor). I am at Christies in Manchester and my onc was successful in geeting the drug funded for me by the Cancer Fund. I don’t know all the conditions of eligibility but you do have to be post menopausal with secondaries.
Karen x
Hi , thanks Karen , yes my sister is post menopausal , she had her ovaries out at 36 when 1st diagnosed. She has been diagnosed with secondaries for 18 months, is oestrogen positive 100 percent, arimadex worked in the primary setting , but aromasin was stopped after 1 month when her tumor markers shot up and she has been on chemo since. She is such a fighter, but when you keep getting knocked back with bad results , it just floors us all . I am a nurse and we try to keep positive , hoping for good results from the next treatment , it’s so hard , I know that you will all understand . She is being treated at a small hospital and nobody there is getting this treatment. I feel it is another fight to get these latest treatments etc , and to keep up to date. I will do this for her, cos she is tired from her treatments ! You fight bloody cancer , and you fight for your right to treatment !!! Seeing the oncologist this week and need to be prepared . Thank you Karen , all the best with your treatment x
Flo i got my second months supply of everolimus today.I was told i qualified because letrozole had failed to work,as had arimadex.As my next drug would be exestemane,and this is the drug they give alongside everolimus,then I should get the funding which I did.
i was originally having my treatment at a small hospital and had to push to even get scans, so I asked for a second opinion at the Royal Marsden…I decided to stay there for my treatment and now feel i am getting the best treatment available.Do you think your sister wpoild be prepared to ask for a second opinion,then at least you would know if the treatment she is getting now is the best for her or if there is something more suitable.Good luck with onc appointment.
L xx
Hi lucinda,thanks for replying . My sister has been to the marsden on a couple of occasions for a second opinion. Each time we have been ,the professor has said she was on the right treatment which gave us some reassurance . We live about 3 hours away so it would be difficult to go there for all of her treatment. Our local hospital has not got anyone on affinitor and if you ask for anything not in the ‘norm’ you would think you were asking for the world , or they have never heard of it !. Think it may be time to go down to London again . Are you on a trial or is it being given as a standard treatment at the marsden ? Appointment tomorrow and I need to be prepared . Anybody on affinitor , where do you live ??? Thanks very much . All the best with your treatments x
Hi Lucinda
would you mind PM-ing me the name of your consultant at The Marsden? I have a feeling I may be asking for a second opinion when I see my onc tomorrow. Oddly enough it’s not that he won’t give me something but its something that I don’t think will be the best combination given other heart related problems I’ve had since finishing FEC chemo in 2008.
many thanks
Nicky x
ps Sorry I can’t help with the content of this thread but will be watching it carefully as I’m sure at some point I will be on this hormone combination.
Hi nicky , Good luck for tomorrow x
Hi Flo
Afinitor trials have now ended early because of it’s success, but is not as yet being approved by nice so I had to apply to my PCT for funding,I think you can also apply to the cancer fund.
good luck with tomorrows appointment.
L xx
Thanks Flo, good luck for your sister as well.
Nicky x
Hi ladies. Just popping in to say hello as I will be going on the everolimus/exemestane combo assuming funding is approved. Onc putting in for it asap and hopes it may be through by the end of next week.
Will be picking your brains for advice in due course, I’m sure!
Liz x