Forum Discussion
Duration of MBC?
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
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
31 Replies
- 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.
- A Drs letter may help you get your deposit back or change it to a shorter holiday sooner.
- 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. - 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 - 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??????
- Oh and BON VOYAGE!!!
- 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 :) 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
- 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.
- 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?
