Hi ladies - hope this question isn't too confronting, but I'd love to know how many years some of you have gone with "mets"???One thing I struggled with at the outset was the "how long" question. I was diagnosed in Feb this year. The first oncologist mumbled about 10 years....Obviously they don't know, and from what I gleaned last week at the seminar, there is concern when there is progression to the liver because that is where drugs are metabolised. Interesting because previously my concern was brain. Of course that being said, women respond differently and one of the first ladies I was put in touch with has gone 16 yrs post diagnosis - having lobular oestrogen positive breast cancer like me, and it was in bones AND liver - but stable and has been managed well over the years. Also she has travelled extensively.So, the 64 dollar question is to know how many others are in this 'exclusive club'??? Hope you don't mind me expressing it that way?!best wishes, Elaine

I am only 11 months in so far & feeling well, active, run...Cate

I was diagnosed 4 years ago and still have no real symptoms. Am participating in the palbociclib trial- aged 68 - healthy and active and run a small business eith my husband

hi, yes you have asked a very good question, when i first saw the breast surgeon because they thought it was early breast cancer, after staging scans it was stage 4, "it" had already wormed its way into my spine and my liver so without any preamble the surgeon said 'I cant help you, you need an oncologist and the statistics are 7 years," lovely bedside manner!!!! any way its been 3 and a half years, I have a fantastic oncologist and as he says how long is a piece of string, we have not discussed "how Long" who knows? I am on xeloda at present and will always be on some form of chemo or other, am very interested in the IBRANCE drug trials,I live as best as I can under the circumstances and have scans again on Nov.7th to see "whats happening" on the "inside" I have heard of some ladies 14 years post diagnosis! with all the new treatments who knows what will happen, I have no intention of falling off my perch anytime soon!!!One day at a time, One foot in front of the other!!!wendy 55

Thank you 'been there' and Wendy - yes, I had a similar experience - was dropped like a hot potato!Then of course I asked why not chemo - I said "just give me everything" - but it takes a while to get into the mindset that 1. it will never be gone and 2. chemo is reserved for when it progresses elsewhere..... so very different treatment strategy to the standard "slice, poison and burn" as I learnt from some other site. Charming.

Duration of MBC? | BCNA Online Network

Brenda5
Member
9 years ago
Could you shorten it to one month and then start scheming on the next holiday, say over December after that? Dad is playing hookee from his chemo atm. His white cells were too low for his dose this week so he told them he's going on holidays for one month. I don't imagine they are impressed but its his life to live. He has his usual hormonal blocker meds and all the rest he takes so while it won't be in remission, it shouldn't be rampaging through his body in only one month.
primek
Member
9 years ago
A Drs letter may help you get your deposit back or change it to a shorter holiday sooner.
brightspace
Member
9 years ago
Hi RT chair ...big breaths .....seems good advice from onc..difficult to offer best advice
many of us have the same delemma if we plan too far ahead...shorter os trips can be more enjoyable than longer ones...see travel agent asap for options for altering flights n travel times.
Scooper
Member
9 years ago
Oh I am very sorry to that news. I assume you will not be able to get your deposit back. Have you booked your airfares? It is crappy enough that we have to deal with this disease but then get this news. Where were you heading too and for how long? I imagine that you are in a state. You can talk to your oncologist again and maybe the breast care nurse. I would really be guided by what they have to say. Crap, crap crap.
Love
Sandra
xxxx
R_T__Chair
Member
9 years ago
Update, holiday is booked, 3 months, deposit paid, oncologist now tells me that she doesn't recommend I go anywhere for more than 4 weeks, that letrozole is not likely to be still working by next July when I want to go, and that the meds she has planned to give me next will have side effects that will make traveling very difficult. I'm in a bit of a state and hubb,y whose in denial anyway, is getting frustrated about it. What should I do, who can I talk to??????
ElaineG
Member
9 years ago
Oh and BON VOYAGE!!!
ElaineG
Member
9 years ago
I agree with Brenda's suggestions....
Also don't limit yourself to thinking this is THE 'holiday of a lifetime' - why? Because there may be more.....
And try not to set yourself up for failure or disappointment by having unrealistic expectations!!
Think carefully about what it is that you want to achieve with this pending holiday....and remind yourself of that anytime you run into some inevitable challenges along the way :)
R_T__Chair
Member
9 years ago
Thanks Brenda, getting all my meds, documentation organised is going to be the hardest part. I am very well at the moment, apart from anxiety cause you don't know what's round the corner, I am feeling particularly fit and healthy, just don't want my "Holiday of a lifetime" to be screwed up.
Cheers xx
Brenda5
Member
9 years ago
I think you have to examine quality of life. If you are sitting around month after month, year after year not going away or enjoying life then that's not good quality. Presuming all is well and the Letrozole is holding everything steady you should be able to have that holiday. Just make sure before you go, if its an overseas holiday, you are allowed to take the medication with you. Don't need customs swiping it on you.
R_T__Chair
Member
9 years ago
Haven't been on this site for awhile, saw this post and have the same 'how long" questions. Initially Stage 2 lobular, oestrogen pos in May 2009. Now Stage 4 bone and liver mets, January 2015, Onc said average is 5yrs. Have been on Letrozole since with monthly xgeva for bones, have booked a holiday for next year, but am extremely anxious that something could happen beforehand. Have been stable since being on Letrezole, nearly 2 years, but know it cant last for ever, how long can I expect to get out of Letrozole, only need to get another 9 months to get through my holiday, am I asking too much??? Can anyone advise me?