Why not join the Living with metastatic private group? Access group via the link here.
Duration of MBC?
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I will be interested to hear how you get on Cate64. If I was to take legal action I would put all of the "winnings" into a fund for parking for women with secondaries for parking..............As $54 a week for parking for 2 visits a week can be so daunting to some women. I will just watch your space.
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watch this space @Lizzie13
I have only made inquiries so far because I wanted to be a little more through my treatment & stable before I took such a thing on but I feel ready now. Not that it can change anything, it is what is. I just want them held accountable as I wouldnt be in this position if they investigated 6 years ago when I very first voiced my concern.
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I have metstic bc now for 4yrs and nine months. Even though I have had a bit of a hic cup recently, I am lucky that there is no spread in my organs only in numerous bones. I never asked my oncologist how long I have because I didnt want to know. I had nearly a 2 year break from being on chemo. Just taking the hormone tablet Aromisin. Now it seems to not be working properly so I was be starting back on chemo any day now. I am happy with my oncologist so I think that makes a difference. Dont worry about how long you have , just get out and enjoy life while you can. Well thats my theory.2
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Dad got word back from the oncologist. He had no scans or anything but his blood test showed his white cells were too high (whatever that means) and he has to continue having chemo. It would be nice if they would be honest and say he has a chance at coming good or if he should just enjoy whatever life he has without being sick all the time from chemo which he has been having since March.0
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Hi Cate, I successfully sued my orthopaedic surgeon.You need to get a copy of your oncology/hosp records.You may have to pay a small fee but you are entitled to them.Find a lawyer- they only go ahead if they think they can win. Then it's about finding another specialist willing to report on your treatment.It took a few years but it was settled out of court.You may be able to claim for pain and suffering My lawyer got half so I didn't get a lot but it was worth it. Tonya xx0
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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?1
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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.0
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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
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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
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Oh and BON VOYAGE!!!1
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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??????0
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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
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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.0 -
A Drs letter may help you get your deposit back or change it to a shorter holiday sooner.0
