Just found I have bone mets. Scared and confused.

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  • Debke33
    Debke33 Member Posts: 26
    edited May 2012

    I am sorry for your diagnosis and I am also fighting bone mets but I am triple negative. You are blessed that you can take the meds for BC patients that are positive for estrogen and etc. that is not an option for me but I am not giving up hope.



    I have a 17 year old daughter and it kill me everyday to think that I will not be around to see her get married or to see my grandchildren.



    I found out this week that xeloda chemo pills are not working for me and I am trying a different oral chemo treatment. When I found out I came home and cried for a couple of days. I know I am going to have to get that horrible port and lose my hair again but I need to fight to live for as long as I can. I do a lot of praying and hope for the best.



    We are fighting a horrible disease and it could be worse. When I went to my last appt I saw a young lady who looked to be about 16 no older than 18 and I thought if she can fight this so can I. Stay strong and I hope you find s treatment plan that work really well for you.

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    Debke33 I am sorry about that but we have to be positive and strong for us and our kids. I am finally coming to terms with what I have but I still can't handle it when watching my kids I do to private areas and just break down. I started to take ani depressed Meds because it is to much for me to handle. There so many moments during the day I just sit there and stare. But we have to fight this for ourself and our children. My kids still need my they are too young to be without me. Ilile I said I want to see high school graduation I want to college graduation , I want to see them get married. Damit I want that I deserve that. I also pray everyday for god to hear me. Alot of people and dr. Tell me there is so much treatment but when you read dr google or some of the other bad stories women wrought on there blogs. You just want to cry and wright away I compare my self to that person. I was in central park yesterday with my little guy there. I seen all those moms with small babies or bigger kids and I just flipped. I needed to get out but I didnt. My whole thing right know is to be positive and try to stay healthy for my boys and hope and prey the Meds work. Who knows I maybe dancing with NED one day it is possible and it is possible for you. HOPE

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2012

    Sometimes over the counter meds like advil work better than prescription meds for bone mets pain.

    My best friend died two years ago after 11 years of living with bone mets. She took Femara for a long time. I am also sort of an old hand with Femara, been taking it now over 4 years and have been NED for as long. My daughter was 7 when I was diagnosed (Stage IV bone mets) and is now 12. I think I'll be able to see her graduate high school from the look of things. Like yesterday, I beat a very fit woman, 15 years younger than me, at tennis: 4-0. And it was my first tennis match in a year. Last year at this time I couldn't move so fast. My body has survived the winter with Femara much better this time around.

    Keep us posted on how you are doing.

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    Heidihill I am so glad to hear all the amazing stories. After how much treatment dis you become NED. Would love to know. I am glad to also know that I do have the opportunity to raise my kids until they are ready to go on there own. All the stories I read on this website are truly amazing. It tells me u could live a normal life and travel and do the littlest thing like rolling on the grass with my little. The one thing I did learn from finding out I have bone mets is not taking things for granted. I had a Mini vacation planed to las Vegas in October I was going to cancel it but just changed my mind after reading some stories.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2012

    I started chemo in October and was NED by February.

    Regarding vacations, it's always good to have something to look forward to.

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    Today is a really bad day.  I just can't stop crying and thinking about it.  I feel like I am completely empty.  I try to pull myself together for my kids and my husband.  I really dont have anyone to talk with except my sister but she does not know much.  I am keeping this from my parents because I think this would KILL them.  I really need them because I have two kids to worry about.  I can't aford for them to get really sick on me because then who would help my husband if something happened to me.  That said I am planing to be around for a long time if god permits.  But its hard because its like I have a lump in my throat that just wont go away.  Since I found out there may be a possibilty of metastic diseases I went on a strict diet that was 3 weeks ago.  I was diagnosed only last week.  I lost about 18 pounds from stress and not eating crap I used to eat.  I am scared to eat know a days.  I just dont understand how these things happened to people.  I think I would deal with it a bit better if my kids where grown.  But I cant stop thinking about my beautiful boys.  How much they need me.  That said it gives a bigger reason to fight this disease even more.  I keep speaking to all my doctors by the way I am driving them crazy.  They tell me yes it is not the greatest news but.  This is treatable and there are so many options and with all the options know a days you could live a normal and long life.  But It just does not sink into my head.  I was reading about another women this what I have but I think it is also in her organs and the way she makes it appear like we are all dommed.  I just can't cope with this.  I want to see them develop into young man so much.  Everything I do is for them.  This is so not fair.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Stella, ((((((hugs)))))))   I know this is hard to accept but you will do just fine.  Having mets to the bone is better than having mets to the soft tissue.  With treatment you can get to NED and stay there for a very long time, long enough to see your children grown.  

    The best way to handle all of this is to accept that you have mets that are treatable, Let go of the fact that you have cancer and live each and every day to the fullest and create the best memories possible so that when your children are grown they can talk to you about all the great things they remembered from their childhood.

    Love n hugs.  Chrissy 

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    Thanks Chrissy I admire you so much why do we have to be so far from each other.  I would have loved to meet you in person.  You have the best attitude about this and you actually come me down when ever you reply.  I am just so stupit about this disease.  The word CANCER just scares me so much.  I went to the park and I was just staring at all the moms with there little ones and I was you are so lucky but then you dont what they have.  If you seen me you would never know that I am sick.  Oh and I am really trying to eat well.  I want to starve the little suckers (cancer).  Maybe if they dont feed they will die.  I am switching slowely to organic food.  I cut most meats  except chicken and fish.  I cut out alot of fruits.  I cut out almost all the sugar from my body.  I am also so you know diebic.  Y diebetis is great I dont think it was this low ever as it is know.  I most of the time below 120.  (YAY)  Maybe with the right food, a bit of excersise and the amazing treatment we are getting who knows I maybeome NED.  I pray all the time...........  Thanks again Chrissy you are truly an amazing women with so much heart.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Stella, you are not the only person to freak out at the word 'cancer'.  For many years if you heard that someone had cancer you knew automatically that in a very short time you would hear that they had passed.  That happens very rarely now as we have so many treatments available to us that if one doesn't work there is another that probably will. 

    I have become a bit of a people watcher since my Dx.  I find that by studying people doing their everyday chores or shopping or playing with children in the park or doing the weekly shop at the supermarket or just walking down the street I can remember when I did those same things and never gave a thought to the future.  I try very hard to remember how I was then and live that same way...........calm, enjoying the day for what it is be it good or bad, and laughing for the pure joy of living.  Yes I am dying but so is everybody else.  We begin to die from the day we are born but it is only when we are confronted by death that we become aware of that fact. Knowing that still doesn't alarm me as I still have no idea when that will be..............it could be tomorrow but it could also be in twenty years time.  

    Remember there is nothing that you did or didn't do that caused you to get cancer in the first place and there is nothing that you did or didn't do that made you get mets.........it just happened.  It's the same with your diabetes all you can do is do the right thing with your diet and take your meds and that is what controls it and your mets are the same. You can take your meds and do the right thing by eating as healthy as possible and hope  that the meds work for you to control it for as long as possible.......that's what we all hope for.

    Love n hugs.  Chrissy 

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    I understand eveything that you are saying.  But I think its better not to know because you could be more free,  By knowing that you have this disease that could get you any min. is whats killing me.  I want to plan like any other healthy person for future things because I am only 40 years old I have not did anything yet.  My dream was to get married and have a family and one day to be a grandmother.  But this disease may take that away from me.  Not know what my future will bring is scary.  I want to have a college graduation party for my boys I want to plan a wedding one day I want travel with my husband when kids are gone. Damit we had plans. I know I still have an opportunity to do those things.  I have to believe I will do those things I can't except anything else.  But the fact is a fact I am sick today who knows what tomorrow will bring.  I know am strong today I just have to fight maybe I feel like this is because I have not started my treatment. 

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    One good news my hip xrays came back and my hips are fine dont need any pins or any type of surgery.  I am happy for that one good thing.  Doctor said I could go back to the gym.  I am so happy that I could still control somethings about my body such as execersise and eating right the rest I will leave to the modern day medicine.  I just want to thank all the ladies that are guiding me through this process. 

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Yay Stella, that is great news!!

    Love n hugs.  Chrissy 

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    I finally made an appointment with another onc for a 2nd opinion.  This onc is the brother of my surgeon who I trust dearly.  He is a great surgeon.  His brother from what I hear is great too.  But I think I need a 2nd opinion since this is my life.  But I am a bit confussed what happens if this onc. has a different theory how do I know who is better since I am not a very good judge of character.  My surgeon who I spend hours on the phone with regarding my situation said dont switch just hear what another doctor has to say.  He did tell me from reviewing a my chart and looking over all the test I took and the type of medication my orginal onc is going to use on me.  He said it is exactly right.  But how do you choice.  I know I am ahead of myself they both may come to the same conclustion but this is my life I am 40 years old not that much experience with doctors except with my breast cancer issues how do you know?????????  Anybody help me.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Stella, a 2nd opinion is just that, a 2nd opinion.  Another pair of eyes and another brain looking at all the information and giving you their opinion as to treatment etc.  I agree with your surgeon whom you trust, don't change just because.  If you are happy with your present onc but just want to check on your treatment, there is no reason for you to change.  Your surgeon agrees that you are set to have the standard of treatment for you so, get your 2nd opinion and then move forward with your treatment.  Good luck.

    Love n hugs.  Chrissy 

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    I just got my second opinion I love the doctor he spent almost 2 hours with me he made me feel so much better he explained the mets to the bone. I feel he is so much better than my onc. He seemed more educated about this disease he did not look at his computer once to give an answer where my org onc gives me all the answers from the computer. I feel so much more comfortable the treatment is basically the same but thus doctor seems to know more. The only thing is I just started treated with org onc how do I make the transition a bit easier?????

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Stella the transitiona at this stage is not going to be a breeze.  Keep in mind that no matter what your present onc says, this is all about you and how you feel.  Just explain to him that you feel more comfortable with the new onc and want to be under his care.  If your present onc is any sort of person he will understand this and not make it difficult for you to change.

    I'm very happy that you have found the right one for you.  Good luck with the transition!

    Love n hugs.  Chrissy 

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    I am not changing today.  My new onc and I decided we will wait for a period of 3 months where I still get to see the new onc and the old one.  The reason for that is we just started treatment and I dont want any problems at this point.  So I want it to be as smooth as possible.  Also since I started my new treatment yesterday lots of side effects.  I really feel like crap today.  I could not sleep at all I was freezing while my husband said it was hot.  I also had joint pain and my head was in pain.  I decided to take 2 advils and I felt so much better.  I fell asleep at like 3:00am and guess what I had to get up by 7:00am to go to work.  Very hard day today because I am so tired what I would not do to lay down and take a nap.  Oh Chrissy what my new onc. said was that bone mets are not life threating.  He did said they are not curable but very much treatable.  He also said he has lots of patience who live very long lifes 10, 15 20 or even longer.  It all depents on an individual.  He gave me so much hope.  He even called another onc to say the same thing.  My visit made me relax.  It is so important when a doctor talkes with you and explains. He told me to stay away from DR. GOOGLE.  He said it is so incorrect it is not even funny.  He said nothing is correct there.  Love and Hugs

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Oh Stella I'm so sorry you feel so bad after your treatment.  Taking a couple of advil sure does help but should you continue to feel so bad please let your onc know as he can give you other meds to help out.

    Your onc is such a wise man as goggling for information is such a bad thing to do and all the statistics that you find on there are so out of date they are almost as old as the ark....lol.

    I'm so glad that you are now a little more relaxed.  It does help when you can relax enough to be able to see clearly.

    Love n hugs.   Chrissy 

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited May 2012

    Chrissy he also said something else helped alot.  He said with bone mets if I called him since its not life threating he said not to worry even if he did not call back ASAP.  He feels that comfortable with this disease.  He has 24 years exp. and he has book out and he does lots of seminars he is really a great doctor in ny.  Very well know.   I am happy I found him and I am in great hands.  The best part not once did he have to look at the computer to give me an answer.  To me that is so amazing because my org. onc can't answer a question with looking at the computer (not that he is bad I also think he is great but as far as knowlege I feel the new onc is right on the money in my gut).  I hope I am I got this right.  Smile 

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Having faith in the knowledge of you onc is really important......in fact having faith in all your docs is a good thing as we literally put our lives in their hands.  I'm very glad you are feeling very comfortable with the abilities and demeanor of the new onc.

    Love n hugs.   Chrissy 

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