Long time survivor with bone mets

Welcome Tammy. So sorry you have to be here, but glad you found us.

I'm pretty new to this myself so I don't have much info, but there are a few ladies who check in here that have had bone mets for over 15 years and longer and are still going strong. I was so glad to find out that it is not as bad as I thought. There is still a good chance to be about for a long time.

Tammy - sorry you're dealing with possible progression.  There are many women who live very well for years and years with bone mets.  Since it sounds as if Femara worked at least 4 years for you, it seems as if the hormonals are a great tx for you and will keep you stable for a long, long time.  If you do have new mets, your onc will probably change your medication to a different one like Faslodex or another AI and hopefully it will keep you stable for many more years.  New txs will be added in those years and give you even more options, and there's always chemo as well. 

I hope your radiologist is just wrong since PETs are known for picking up every little thing, but aren't very specific about what it finds, but a new met in just one area of your bones is still relatively "good" news.  Hugs.

tammy, waiting for results is never a good time for anyone, it just makes your imagination run wild and makes u think of the worst..practicality and logic just disappear..i have been through that and still do for my mum who is stage 4 ..its possibly the worst feeling in the world..i empathise completely..

my dear friend u seemed to have had such a good run and i am sure u will continue to do so..the rest of your scan has come out clear and and just a possibility of one spot..! that would be really good news for some women, i know ideally none what so ever..i am sure they can get rid of this spot and from what i have heard radiation does wonders in bone mets and such situations..

pls hang in there and keep thinking positive..

 loads of hugs and best wishes and prayers coming your way..sleep well and big hugs to your kids too..

xx

Dear Tammy,

Do not be scared ... there are lots of us 'living' with mets.  Sometimes I think the people doing well do not visit the forums so much, one only turns to them in need..... I'm only here today as a friend is having some side effect issues.

My mets are shrinking and my markers are down from over 1000 last year to almost normal.  I have no pain (brief pain period on initial diagnoses) and live a fairly normal life .. planning second long ski holiday since I got the mets.

I was diagnosed in 2005 with BC  and bone mets (pelvis) in Sept 2009.   Tried various hormonal drug changes but markers kept climbing (over 1000).  Then switched to Xeloda (minimal side effects) and that turned things around

(possibly also a fever I had ...  while travelling and skiing, but I haven't mentioned that to the onco .... 'google' cancer, fevers, hyperthermia.. Not suggesting you induce a fever... but i graphed my markers and the peak point would have been at fever time... so who knows? )  .  

 Still on the xeloda, marker decline has slowed.. not quite normal yet.  Scans still showing small improvements each time.

Also on Bonefos.

Don't panic - there is lots they can still do, and you can help, eat well fresh organic,veggies, sleep well, exercise well preferably fresh outdoor oxygen etc, do things you enjoy.. 

Hi Tammy, I'm newly diagnosed stage 4 but I wanted to tell you that practically everyone that I told my situation to knows who has had bone mets for a LONG time. The fact that you are hormone positive and only have it in your bones are great for prognosis. Hopefully we will get more responses. I'm curious too.

Sorry you had to join us here, tammy.  Yes, they can radiate the spine, and it can kill the cancer in the spot they treat.

  If you have only one spot of cancer on your spine after all these years, I do think that is a good sign that your cancer is slow-growing. There are no guarantees, of course, but so many of us find cancer all over our spine when it's found (like me), that having it in just one spot seems very hopeful.

  I had radiation to my T3, and it really helped.  I'm also getting Faslodex and Xgeva, which have kept me stable for a year.  It sounds to me like you will be one of the lucky ones (if there is such a thing) that will have a long life living with bone mets- possibly with periods of NED. 

  Best of luck to you!

Hi Tammy,

You've had lots of good input from the ladies on this forum. My bone met is to my femur and I had rads for that and it is now necrotic. I am on Arimidex, not Femara but it often has the same se's, i.e. bone pain/joint aches. I take glucosamine/chondroitin, MSM and D3. I also exercise and move around as much as possible. Sitting for long periods of time makes me stiff. It's been 7 months since I started taking it and by the third or fourth month, I barely noticed the se's. I am very optimistic about living with bone mets, even if I eventually have progression. Take good care of yourself. Caryn

Hi. I go for rad this week. Do you know what dosage they gave you and how many times? Did you have any side effects? My friend said not to wear deodorant, I wasn't told that.



Thanks

Hi Sandra - Welcome to Breastcancer.org! Looks like this thread is not active since 2012, so likely won't be visited by many of the members who posted here. We encourage you to begin a new thread if you want, and share your particular situation to find answers and support from other members. Under this same forum should be fine if you are stage IV. Just click above this page, in the title of the forum, and then click on "Start a new topic". Add a title, write your comment, and when you are ready to post your new topic, click "Submit".

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