Xegeva/Faslodex Bone Mets After 6 years

romey
romey Member Posts: 2
Hi ! I am new here and have never posted and was searching for people with bone mets (breast cancer 2005) and some questions about Xgeva and Faslodex. I did see a post from a lady asking about both !!! I just found out that I have bone mets in my sacrum/pelvis area - had all the tests and scans this last couple of weeks. I am going nuts over trying to decide what treatment to go with and my oncologist has given information on several including Xgeva and Faslodex. I dont know too much about either and only know they are an option to me. I would be very interested on what is out there are these drugs and I am hoping to find some support here. I hear and read alot of negative things about Femara etc so I am apprehensive.

I am not one to complain but I am having a real hard time trying to get my mind warpped around this. When I went through chemo and radiation six years ago I did very well with my attitude and didnt have too much trouble looking back on it. But for some reason now that the cancer is back I am really scared about side effects for the drugs that are being offered up at treatment. I was on aromasin after treatment for 5 years and after awhile I was
an emotional wreck my hair was so thin and my cognitive thinking was almost completely absent. It was hard for my family to be around me, I was so emotional. My Dr wanted me to continue on Aromasin but I chose not to continue. So for the last year or so I have rebounded and have been feeling great - and can THINK with the best of them. With this new development I fear that I will regress and get nutty again. I feel that maybe I brought this back with
my fearless attitude and the choice to stop the drugs.

I am trying so hard to find my positive side and the thought process of just merely not
accepting the side effects of the new drugs - that has worked for me in the past. Its just
not coming around as quickly as I would like. I have to go in tomorrow and make the decision
on what treatment I will take - wish me luck.

I am glad you are all here for each other and I will certainly do my best to be there for
whoever needs me

Romey

Comments

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    Hi Romey, I am sorry you are
    Hi Romey, I am sorry you are visiting here because of a recurrence. I also have bone mets (ribs). I am about to switch from zometa to xgeva. Both have similar side effects but zometa can hit your kidneys and xgeva doesn't usually affect kidney function. I have had no side effects thus far from zometa and am hoping for the same luck with xgeva.

    Both can cause jaw necrosis and you should have your teeth checked before you start. Maintain excellent dental hygiene while on the drug as people with poor dental hygiene and smokers are the highest risk. I have become a brushing/flossing/mouthwash OCD nut...lol. BUT, so far, so good! I also recommend that you print out the patient instructions below and take them to your dentist. Avoid having any major dental work while on this drug.

    Osteonecrosis of the Jaw

    I have not heard firsthand much about faslodex--only what I have read. I will probably be switching to that drug from arimidex as my markers are climbing and my oncologist said he was going to discuss it at my next visit.


    "How Does Faslodex Work?

    Faslodex is a hormone treatment for breast cancer. It works in two ways. First, it works by binding to and blocking estrogen receptors. When Faslodex binds to an estrogen receptor, it blocks estrogen hormones from binding to that receptor. Essentially, the drug competes with the body's natural estrogen. However, unlike estrogen, Faslodex does not encourage breast cancer growth. Secondly, Faslodex decreases the amount of estrogen receptors on the cells, which also reduces the effect of estrogen on breast cancer."
    http://breast-cancer.emedtv.com/faslodex/faslodex-uses-p2.html
  • pinkkari09
    pinkkari09 Member Posts: 877
    Hi Romey and welcome to the
    Hi Romey and welcome to the board you never wanted to join but will be so glad you did. I was diagnosed in August of 2009 after multiple treatments and operations I had 7 clear months and then it returned this year in my bones (four tumors on my spine and one in my hip, back in my lymph nodes). I took Xeloda (chemo pill) for 6 months and it didn't work so I'm starting Gem/Carbo on Monday. I get an Xegeva shot once a month and I've had no trouble thus far. My Onc. has me on additional Vitamin D/Calcium supplements because the Xegeva uses it.
    I'm glad you found us and remember, were here 24/7 :)

    ~Kari
  • Angie2U
    Angie2U Member Posts: 2,991
    Hi Romey. I wanted to
    Hi Romey. I wanted to welcome you to the site and to tell you how sorry I am that your cancer came back. I will be praying for you.


    Hugs, Angie
  • Alexis F
    Alexis F Member Posts: 3,598

    Hi Romey and welcome to the
    Hi Romey and welcome to the board you never wanted to join but will be so glad you did. I was diagnosed in August of 2009 after multiple treatments and operations I had 7 clear months and then it returned this year in my bones (four tumors on my spine and one in my hip, back in my lymph nodes). I took Xeloda (chemo pill) for 6 months and it didn't work so I'm starting Gem/Carbo on Monday. I get an Xegeva shot once a month and I've had no trouble thus far. My Onc. has me on additional Vitamin D/Calcium supplements because the Xegeva uses it.
    I'm glad you found us and remember, were here 24/7 :)

    ~Kari

    Just saying welcome and hi
    Just saying welcome and hi to you also!


    Lex
  • camul
    camul Member Posts: 2,537
    Hi Romey
    Welcome to this site, it has been the best thing that I have done for support. I am sorry that your cancer is back. Unfortunately, so is mine. I have Bone and Skin Mets, in most of my bones.

    I am on Xgeva, with vitamin D, Calcium and Potassium supplements. I also am on chemo, Erubulin. I was on Abraxane, but switched. I was also on Zometa, but like Cypress Cynthia my doctor changed because Xgeva does not affect the kidney function.

    Good luck on whatever treatments you decide, and there is always someone on this board with information that is helpful.

    ~Carol
  • cahjah75
    cahjah75 Member Posts: 2,631
    Romey
    Welcome to this site but I'm sad for the reason. I'm currently on Arimidex. There are a few with bone mets on this site who have already shared what they know. I wish you success in your new journey. Will keep you in my thoughts and prayers.
    {{hugs}} Char
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    camul said:

    Hi Romey
    Welcome to this site, it has been the best thing that I have done for support. I am sorry that your cancer is back. Unfortunately, so is mine. I have Bone and Skin Mets, in most of my bones.

    I am on Xgeva, with vitamin D, Calcium and Potassium supplements. I also am on chemo, Erubulin. I was on Abraxane, but switched. I was also on Zometa, but like Cypress Cynthia my doctor changed because Xgeva does not affect the kidney function.

    Good luck on whatever treatments you decide, and there is always someone on this board with information that is helpful.

    ~Carol

    Welcome to this site Romey.
    Welcome to this site Romey. So sorry that you are here though. Sending positive thoughts and prayers.


    Hugs, Jan
  • Joy77
    Joy77 Member Posts: 1
    cahjah75 said:

    Romey
    Welcome to this site but I'm sad for the reason. I'm currently on Arimidex. There are a few with bone mets on this site who have already shared what they know. I wish you success in your new journey. Will keep you in my thoughts and prayers.
    {{hugs}} Char

    Jaw problems from Zometa
    I just found this place today. I was searching for information about the OTJ problems.
    I have been on the Zometa infusion for almost 5 years now. In December, my oncologist changed the treatment to every 3 months. I had a bone scan and a PET scan, and everything looked good, but there was "something" going on with the jaw bone. I saw my dentist on Sat. and he took several x-rays. One was an head x-ray that showed the whole bottom part of my head. He showed me where there was spots of infection and also showed that a lot of the upper jaw bone has thinned. He injected an antibiotic in several places. I have to see him in a month. Meanwhile I will see oncologist in the next tweo weeks. I had breast cancer in 2007 that had spread to my spine. I have spine surgery and also a mastectomy.
    I also take Femara, which has posed no problems. Thankfully, there is now a genetic form which isn't as expensive. I am doing extremely well with no problems and my tumor markers are within good range. The dentist told me that I will have to go off the Zometa. And, I had heard about the Xgeva, which is a monthly shot. But, after reading up on that, it also causes the jaw bone deterioration. So, I am just interested in what different ones in this site feels about this problem. I hope I can find my way back here.

    Thanks. Joy
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    cahjah75 said:

    Romey
    Welcome to this site but I'm sad for the reason. I'm currently on Arimidex. There are a few with bone mets on this site who have already shared what they know. I wish you success in your new journey. Will keep you in my thoughts and prayers.
    {{hugs}} Char

    So sorry Romey that you have
    So sorry Romey that you have bone mets now after all of this time. I am sending positive thoughts and prayers for you.

    Some do have bone mets on here and I am hoping will respond.


    Hugs, Diane
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    DianeBC said:

    So sorry Romey that you have
    So sorry Romey that you have bone mets now after all of this time. I am sending positive thoughts and prayers for you.

    Some do have bone mets on here and I am hoping will respond.


    Hugs, Diane

    Dear Romey,
    So sorry that

    Dear Romey,
    So sorry that you have bone mets. We are always here for you and the other ladies with bone mets can be a great help to you as you have already seen. You only took a year off the Aromisin so don't beat yourself up over that.
    I wish you all the best and will say a prayer for you.
    Hugs,
    Wanda
  • skipper54
    skipper54 Member Posts: 936 Member

    Dear Romey,
    So sorry that

    Dear Romey,
    So sorry that you have bone mets. We are always here for you and the other ladies with bone mets can be a great help to you as you have already seen. You only took a year off the Aromisin so don't beat yourself up over that.
    I wish you all the best and will say a prayer for you.
    Hugs,
    Wanda

    Sorry for the need but welcome aboard
    glad you found this group.

    Prayers for answers and peace are coming your way.
  • jnl
    jnl Member Posts: 3,869 Member

    Dear Romey,
    So sorry that

    Dear Romey,
    So sorry that you have bone mets. We are always here for you and the other ladies with bone mets can be a great help to you as you have already seen. You only took a year off the Aromisin so don't beat yourself up over that.
    I wish you all the best and will say a prayer for you.
    Hugs,
    Wanda

    I'm so sorry Romey that you
    I'm so sorry Romey that you have bone mets now. My heart goes out to you.


    I am glad you found us, but, very sorry for the reason.


    I will be praying for you,

    Leeza