Hi gals

Well I guess I am looking for answers that the docs won't give me...I have bone mets and want to cure it....I keep getting told that it cannot be cured..I don't believe it.

For those of you out there with bone mets have you had good results with the treatment that you've had so far???

If i could find some good treatments in the states i would come over and do some....I'm not sure the docs here are up to date with all the treatments.....would be interested to hear from anyone who can help

I have rib mets (according to CT/MRI of Feb.March).  I had annual nuclear bone scans, but the mets didn't show in November.  

I had Zometa infusion & taking my calcium w/D.   On Thursday I have CT to monitor progress.  (I had other mets) and also taking Xeloda & Avastin.  A great nurse named Fred told me don't listen to statistics.  You are an person,not a statistic!  Best to you,  Dee

Hi beastybabe - I think the US is the best place to treat any form of cancer, mets included. My brother and I are currently planning my mom's trip to the US for that purpose. Check if your insurance plan covers treatments abroad, if not - look for other insurance alternatives, as it can get very expensive. I found an international plan that covers disclosed pre-existing conditions (not a cheap one, it costs 19k/yr) but I am unsure my mom would not be denied because her diagnostic is bone mets - and will be very expensive for the insurance company too. Also, there are always clinical trials you may qualify for, and those should be free, I believe. I am myself very unsure about the best way, but I strongly believe there is a way, and it awaits to be uncovered by us.

God bless!

I have bone mets too.  It is true, the doctors say there is no cure.  But remember it is very treatable and we all pray the cure is coming soon.  And in the meantime there are many effective treatments.  Coming to the US would be a great option, but if not, I hope you & the doctors have the same access to information & medications. 

I've had bone mets for over 5 yrs.  I started off with the hormonal drugs (femara, then faslodex) but they didn't work well for me.  Then a series of chemos (taxotere for 6 months, navelbine for 1 yr, with breaks in between)  now I've been on xeloda for over 3 yrs & it's keeping the mets stable.  In almost 6 yrs with mets I've had very little progression -- a few more spots on ribs & vertebra, but that's it. 

How are they treating the bone mets now?  It's possible to have them go into remission with effective treatment, not a sure 'cure' yet, but NED is possible.  And the body is a great self healer and I do think some people are cured - even though medicine doesn't yet have a cure.  I wish you the best treatment decisions in your next steps.

I also have bone mets and have been told no cure...

I am now doing xeloda and Bonefos , have done Arimidex with progression, then a few mths of Aromasin, but wanted to try Faslodex, had two injections  of 250mg thats all we get here in Australia....its kinda like a trial here at the moment, only one hospital here in WA has the go ahead to give it, sucks if u ask me...

we are so behind here , but I dont think we are as bad as you ppl in NZ, I hear that women from NZ are comming here to Melbourned to have chemo and rads as its cheaper to send them here and they get the treatment quicker..

hope u get the answers u are looking for..

hugs

oz

I know a woman who has had bone mets for 20 years. No cure, but she is living her life.

Hi there,

I have bone mets. Dx in Aug07.  I've been on a trial - Amgen since there.  My last PET scan, 2 weeks ago, described the bone mets 'have been resolved'.  So I know there's hope.

Good luck, and God bless

I don't think you'll find an onc anywhere who will say he/she can "cure" you. A "cure" is very unlikely in a metastatic situation. It is however, treatable and some women live many years with bone mets. Depending on your pathology, treatment would likely include chemo, radiation and hormonal therapy. Beyond that, I don't think there is much they can offer, so if that's what they're offering in NZ, it's probably not necessary to travel. Like Jordan said, shooting for "no evidence of disease" is something to shoot for, even if there is no cure.

Hi,

Though it is widely considered there is no cure for bc that has spread to other parts of the body (bone included), there are a few lucky women who have become NED and stayed that way for many years after a stage 4 diagnosis.  So, I say never say never!  Also, it is possible to treat and control the disease for many years.

I was diagnosed 2 years ago now with bc and mets to bone from the get-go.  We went in agressively with a combination of taxotere and xeloda which stabilised my mets and I've been stable ever since.  My current treatment is a combination of tamoxifen and lupron.

What treatment are you currently getting?  Most of the treatments available in the US are also being used here in Europe - don't know about NZ though!

Good luck and keep fighting!

Katie xx

Hi BeastieBabe,

I can tell you about my father who had mets to the bones following prostate cancer back in 1980. Although breast cancer and prostate cancer are not the same, I believe the prognosis of bone mets is the same no matter where the primary cancer is found.

He went through surgery and chemotherapy, just as we do for BC. He went into remission for 18 years, and died at nearly 81 years of age of kidney failure -- NOT from cancer.

For that reason, I simply KNOW that bone mets are not a death sentence. It is possible to recover and to live many, many more years. I'd like to add that he was not on chemotherapy after his initial remission, and that all the years he had were happy, productive, healthy, and painfree.

Love to you from Texas,

Annie

I was dx almost two years ago with mets to my hip and shoulder.

I started on tamoxifen and changed my diet from day one to organic, no sugar, no unhealthy fats, and no meat.....Three months later to the amazement of my drs. I was NED and still am.  Sugar and fats feed cancer and I wasn't about to give it any more to chew on.   Good Luck!

I was dx with bone mets only in April of 07.  I have been on hormone therapy for a year, (arimidex) and the little buggers figured out how to get more active anyway.   I have since changed to taxol and avastin.  Hopefully this will settle them down.  I was dx. with stage 2 in 99, and went 8 yrs cancer free.  My onco. says there is a 2% chance of long term remission. My understanding is that there is a good chance of long term stability with the drugs we have now and ones that are in trial are even more promising.  The goal is to keep the mets in the bone and out of the organs.  STABLE is the word.  i have pet scans every three months and i totally trust my onco so i feel positive.  I guess in the grand plan our days are counted and i will be here as long as God wants me here, and i KNOW where im going when i do "go"  There are many promising stories on the site here, keep in touch it will help you.

love, hugs, and cyber hugs

I met a women with bone mets in Ontario and she was given a short timeline to live.  So they decided to give her Docetaxol weekly in smaller doses, she is doing great and it's been over two years.  And she looks fabulous.  She said she also took Ambertose by Mannotech.

Please note I'm not a seller of the Ambertose at all haven't even tried it but she was happy with it.  Just wanted to clear that up.

I was dx with bc in 98 and bone mets in July 06.  So I was 8 years cancer free and now almost two years and still on hormonals.  I hope things stay this way for a very long time.  In fact I am due for scans again but think I am going to put them off a little while longer.

I was dxed with bone mets in June 2007, the doctor told me that since it is bone mestases that it is no longer curable but manageable.  I have been stable since then and have been taken off of the Abraxene and now only on maintenece which is zometa, zolades and advastin.  I have read some posts on here that women were NED which means no evidence of diease.  The doctor also told me that bone mets were the easiest to stabilize.

My advice is don't get caught up with the words, focus on getting better and staying positive.  I firmly believe that a positve mind heals the body.

If you need any information, please pm me and I will tell you all I know.

Take care and many hugs.

Roxanne 

Good to read encouraging comments on bone mets.  I just got told today that I have another spot on my 5th rib and one on the parietal bone in my skull...earlier I knew I had one on my sternum and my T8 vertebrae as well as in my liver. 
The news just doesn't seem to get better.  I'm scheduled for more Herceptin and Navelbine this coming Wednesday and need to feel that things can be reversed.

Another strange thing happened which I found unnerving.  My onc e-mailed me today telling me that she understood that I wanted a different doctor and thought that would be fine and then said, rather by the way, oh and your bone scan showed two more spots.  I was in shock.  I never requested another doctor but a friend thought perhaps I should get a new doctor because I know my onc personally...then my friend told her friend who is using this other doctor who then told my doctor that I had requested her.  Wow!  This seems so unethical to me.  I'm unnerved by this doctor whom I have never met, taking this on, as well as by the fact that my doctor didn't check this out with me before agreeing and e-mailing my the results of my scan!  I've got to have faith somewhere here.

Any comments? 

Oh my, JM, this is soooo unethical indeed! Sorry for the bad news, but hopefully the new treatment will kick ass!

jm86,

That sure sounds like a violation of the HIPPA laws! WTF are they doing discussing all of this without YOU being involved with the discussion? And, it was crass, rude, and unfeeling to just drop a bomb like progression of your bone mets like that. If you weren't thinking of switching oncs before, I bet that has you thinking it isn't such a bad idea!

(((HUGS)))

Diane

Boy does that sound unethical.  I would confront my onc if they did that to me and see where they heard that since it wasn't from me.  In the meantime I would probably start looking for another onc, of course that is if you are unsatified with your onc.  If you are happy with your onc then I would want to know where that came from.  Maybe it was a mistake and they were emailing a client and when they click the TO: button they hit the wrong name?????  Just trying to give the onc the benefit of the doubt.

Talk about unethical it's just plain terrible, also why did your friend say anything without your permission.  No question it was unethical.

Years ago my ex sister in law and best friend of over twenty years was diagnosed with a rare kidney cancer, she worked as a nurse at the clinic her doc was at. And her brother's wife worked at the same clinic. Well there was a falling out in the family and Di wanted her appointments and info kept confidential from her sister in law.  Well my best friend also worked there and was working late one night and heard the doctor tell the sister in law everything.  My friend was outraged and so was I so with my friends permission I booked a late day appointment so I could say I overheard the conversation and I complained to the Chief of Doctors.  I just don't get it, why do some docs do that it stil upsets me at times.  I did have it out with the doctor and she did apologize to me just before Di passed away but I can tell you from experience I had to do something. Breaching that confidentiality is a very immature thing to do.  So I would email back that you would like to know where she got that information from and give her shit.

Thanks for all your comments.  Of course, it reinforces my own sense of violation.  I will need to have a meeting with my own onc to find out how this happened.  I did have faith in her....but really don't like the way she e-mailed me my results after she thought that I had requested another doctor.  What a stupid thing to be worried about when so much else is at stake!

So...my reality is the treatment I need for these bone and liver mets and needing to hear something positive.  What have any of you done about alternative therapies along with conventional chemo?  It's so good to have this conversation be available.  jm

I spoke with my onc about that and he has no problem with me working with a naturalist (think that is what they are called) along with his tx.  The thing is we need to make sure I am not taking anything that will conflict with what tx he is giving me.  He said the biggest problem is finding a legitamate person to work with.  Most of them are just out to make alot of money on their vitamins and herbs.  Of course they only want you to buy their product and you spend alot of money on stuff that doesn't necessarily help you.  He was supposed to check around into who is legit and who isn't but I have been down and out with my back so much lately I hadn't pursued it any further.  I am interested though in finding out more of what I can do naturally to help my body out.  I do know there is a forum here that deals with alternative tx options.  I just have to say I am too chicken to go 100% alternative tx, I have to do what I know is tried and true even if it doesn't always work.

Hi Beasty

Have sent you a Private message about our Aussie/NZ Forum.

May help to talk to those closer to you as well re treatments etc.

Good luck with your research.

jezza

Hey LuAnn,

I think a naturalist is a person who works for a park and shows people what a maple tree is, as opposed to a raccoon.  I know you mean a naturopath, I have seen one who is with Cancer Treatments Centers of America and she has been very helpful. I hope your onc will come through for you as to a referral to an alternative medicine doc. It is actually called CAM: Complementary and Alternative Medicine. This does NOT mean you have to give up whatever medical treatments you are on, the CAM helps you with SE's and COMPLEMENTS your other meds. I hope you can connect with someone who can give you a sense of "covering all bases."

Also hope your back is easing up on you. Hugs all the way to the Ohio River...

Alice, thank you!  All these darn drugs mess up the words.  My brain knows what it wants to say but I can't ever seem to find the right words.  No wonder my kids are always laughing at me.  I did a good one the other night, it was time for my grandson to get his bath and he was being very cranky.  I told one of the kids to go get his mom to get his bath ready because he was fussy, then I proceeded to say, he always enjoys playing in the toilet.  Of course I meant "tub"  LOL  needless to say everyone got a big kick out of that one and it will take a long time to live that one down!!!!  LOL