My meeting with my oncologist...

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CypressCynthia
CypressCynthia Member Posts: 4,014 Member
in Breast Cancer #1
He could not have been sweeter. He said that he thought getting a second opinion at MD Anderson was a "very reasonable thing to do" and he said that he would be happy to work with them. He said, We work well with others." And he reassured me not to worry about it at all. He also ordered another PET and full body bone scan at the hospital where I work because he said it would save me money having them where I work (which is not where he works BTW, so he really was just being thoughtful) rather than at MDA.

Our plan is to switch me from zometa to xgeva and my "homework" is to read about faslodex before I see him again. Anyone here on faslodex and have you had any problems? I will meet back with him after my scans.

In the meantime, MDA should be calling next week to schedule my first appointment. They said to expect to spend ~5 days there, so maybe we'll have to stay at the Galleria? ;-)

Thanks my wonderful, beloved Kindreds for all of your support. I couldn't have done it without you guys!

Comments

  • mamolady
    mamolady Member Posts: 796 Member
    #2
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    What an awesome doctor. No
    What an awesome doctor. No wonder you have stuck with him.

    Cindy
  • chenheart
    chenheart Member Posts: 5,159
    #3
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    We are all grinning with
    We are all grinning with wonderful "I Told You So" grins~ which of course are filled with love and happiness that your pangs of guilt were completely unwarranted~ there is a GOOD reason you have trusted your oncologist for so many years! He too wants you to have quantity coupled with quality of life!!!!! And that he works well with others...icing on your cake!

    Btw...my new oncologist has said he is going to start me on Zometa...I have bone mets, and am of a "certain age" etc. Again, I am wondering why this was not a no-brainer for my NONcologist~he never said anything about building/protecting my bones. How, for the most part, did you tolerate the Zometa and how long were you on it, etc.

    I am so excited for you!!!! Godspeed to you, sweet sister!

    Hugs,
    Chen♥
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #4
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    chenheart said:

    We are all grinning with
    We are all grinning with wonderful "I Told You So" grins~ which of course are filled with love and happiness that your pangs of guilt were completely unwarranted~ there is a GOOD reason you have trusted your oncologist for so many years! He too wants you to have quantity coupled with quality of life!!!!! And that he works well with others...icing on your cake!

    Btw...my new oncologist has said he is going to start me on Zometa...I have bone mets, and am of a "certain age" etc. Again, I am wondering why this was not a no-brainer for my NONcologist~he never said anything about building/protecting my bones. How, for the most part, did you tolerate the Zometa and how long were you on it, etc.

    I am so excited for you!!!! Godspeed to you, sweet sister!

    Hugs,
    Chen♥

    Zometa
    I have been on zometa for 2 years now and, as far as I know, I have had no side effects at all. BTW, besides building bones, many oncologists feel zometa (and xgeva) are like a type of chemo in that, by strengthening and modulating bones, they prevent the cancer from destroying, weakening and, possibly, even spreading. The success of the zometa is measured in time until SRE's (skeletal related events, such as a broken bone). Zometa significantly reduces the incidence of SRE's in patients with bone mets, so I am so glad that you are going on it!

    Xgeva is the newer version of zometa and it has been showing promise (may be more effective even than zometa). We are switching to xgeva because of my situation with my markers and my ongoing rib pain. Xgeva is very expensive though, so not a good option if you don't have good insurance. Especially since zometa may be as effective.

    Here are the other important things to know about zometa:

    1. It can hit your kidneys, so drink lots of water and avoid NSAIDS (advil, aleve, ibuprofen, motrin, etc.)
    2. You will probably have a simple BMP lab test done monthly to monitor your kidney function. So drink lots of water :-)
    3. Before I get my monthly infusion, I have to first get 500 ml's of Normal Saline over an hour to make sure that I am well hydrated before the 20 minute infusion. So drink lots of water.
    4. Because of the above, my infusion usually takes about 1 1/2- 2 hrs, so bring your warm fuzzie and a book. And maybe some water?

    If you have problems over time with accessing veins and you have good insurance, ask about xgeva as it is a once a month shot (no infusion) and it also doesn't hit your kidneys.

    Both drugs put you at higher risk for jaw necrosis, so see your dentist before you go and make sure that you see the dental hygienist every 6 months while on the drug. Good dental hygiene is CRUCIAL in preventing jaw necrosis, so make sure you brush, floss, etc. regularly. I printed out the handout (link below) and took it with me to my dentist. We have avoided doing any dental work since I started. My dentist said fillings are ok, but more aggressive dental work is risky.

    P.S. Any bisphosponate including: zometa, xgeva, boniva, actonel, fosamax, etc can put you at higher risk for jaw necrosis.

    Osteonecrosis of the Jaw: Information for Cancer Patients

    I know this is a lot of information, but I am hoping it will also help others with bone mets. Please pm me anytime, Chen, for more info. You know I am a nerd ;-)
  • chenheart
    chenheart Member Posts: 5,159
    #5
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    CypressCynthia said:

    Zometa
    I have been on zometa for 2 years now and, as far as I know, I have had no side effects at all. BTW, besides building bones, many oncologists feel zometa (and xgeva) are like a type of chemo in that, by strengthening and modulating bones, they prevent the cancer from destroying, weakening and, possibly, even spreading. The success of the zometa is measured in time until SRE's (skeletal related events, such as a broken bone). Zometa significantly reduces the incidence of SRE's in patients with bone mets, so I am so glad that you are going on it!

    Xgeva is the newer version of zometa and it has been showing promise (may be more effective even than zometa). We are switching to xgeva because of my situation with my markers and my ongoing rib pain. Xgeva is very expensive though, so not a good option if you don't have good insurance. Especially since zometa may be as effective.

    Here are the other important things to know about zometa:

    1. It can hit your kidneys, so drink lots of water and avoid NSAIDS (advil, aleve, ibuprofen, motrin, etc.)
    2. You will probably have a simple BMP lab test done monthly to monitor your kidney function. So drink lots of water :-)
    3. Before I get my monthly infusion, I have to first get 500 ml's of Normal Saline over an hour to make sure that I am well hydrated before the 20 minute infusion. So drink lots of water.
    4. Because of the above, my infusion usually takes about 1 1/2- 2 hrs, so bring your warm fuzzie and a book. And maybe some water?

    If you have problems over time with accessing veins and you have good insurance, ask about xgeva as it is a once a month shot (no infusion) and it also doesn't hit your kidneys.

    Both drugs put you at higher risk for jaw necrosis, so see your dentist before you go and make sure that you see the dental hygienist every 6 months while on the drug. Good dental hygiene is CRUCIAL in preventing jaw necrosis, so make sure you brush, floss, etc. regularly. I printed out the handout (link below) and took it with me to my dentist. We have avoided doing any dental work since I started. My dentist said fillings are ok, but more aggressive dental work is risky.

    P.S. Any bisphosponate including: zometa, xgeva, boniva, actonel, fosamax, etc can put you at higher risk for jaw necrosis.

    Osteonecrosis of the Jaw: Information for Cancer Patients

    I know this is a lot of information, but I am hoping it will also help others with bone mets. Please pm me anytime, Chen, for more info. You know I am a nerd ;-)

    Thank you SO MUCH for the
    Thank you SO MUCH for the info~ and if you are a nerd, you are my kind of nerd! :-) It is always so "odd" when I see people ( of course) addressing you as CC~ why? Because those are not your "real" initials, but your username ones, and they are MY real initials. I have been CC since I was born...literally!

    Hugs,
    Chen♥
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #6
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    C.C. .. the stress and struggles you have been thru
    in order to get to this point, is unimaginable. Getting a 2nd opinion, and researching new med's is enough to make a grown women, cry. I am positive that it has taken a great deal of thought and processing on your part, to switch Health care providers. So I will be there with you every step of the way - day or night. You have my telephone number -- please use it, as I am here for you - my Friend.

    So happy that your Oncologist has been gracious, and informative - thus proving his compassion for you, and your current health situation. Suggestion that you get scans there at the hospital where you work -- is a terrific idea. I imagine all your friends and co-workers stopping by to wish you luck - and requesting that we 'Sisters in PINK' keep the noise levels down. LOL.

    5 days -- equals thorough testing, viewing, poking, and prodding! Wishing you much luck, and success -- as well as STRENGTH during your travels, and doctor visits and medical reviews.

    I do not want to minimize your struggle or pain that you gone thru to get to this point. Wishing I lived closer, so I could be with you -- provide you with gentle hugs, support, a few good jokes, and a surprise visit with Wendy.

    C.C. you have amplify demonstrated a zest for life, support of Women's rights and researcher and provider of many helpful threads for we 'WARRIORS'. Thank you so very much -- Now, it is your time. If there is anything I can do .. Please just ask. :)

    You are so dear to my heart and soul, sweet Friend.

    Lots of love, Support, Prayers and Strength coming your way.

    Vicki Sam
  • missrenee
    missrenee Member Posts: 2,136 Member
    #7
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    chenheart said:

    Thank you SO MUCH for the
    Thank you SO MUCH for the info~ and if you are a nerd, you are my kind of nerd! :-) It is always so "odd" when I see people ( of course) addressing you as CC~ why? Because those are not your "real" initials, but your username ones, and they are MY real initials. I have been CC since I was born...literally!

    Hugs,
    Chen♥

    This is so great
    Now you can concentrate on what's important and not worry about your decision. I think we're all really feeling like you made the right one.

    Hugs, Renee
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #8
    Options
    chenheart said:

    Thank you SO MUCH for the
    Thank you SO MUCH for the info~ and if you are a nerd, you are my kind of nerd! :-) It is always so "odd" when I see people ( of course) addressing you as CC~ why? Because those are not your "real" initials, but your username ones, and they are MY real initials. I have been CC since I was born...literally!

    Hugs,
    Chen♥

    OMG, it has to be our cosmic
    OMG Chen, it has to be our cosmic connection! No, I really am Eileen, but I answer to anything ;-)
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #9
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    CypressCynthia said:

    OMG, it has to be our cosmic
    OMG Chen, it has to be our cosmic connection! No, I really am Eileen, but I answer to anything ;-)

    Thanks to each and everyone of you!
    You are the most awesome women ever and I love you all!!! You don't know how much you all helped me today. Each and every one of you said something to give me courage and propel me forward. I am so excited and relieved!

    OK, now I have my first appointment at MDA, it's September 3.

    I know that is a long way off, but we are going on a very special 2 week train trip to Glacier National Park in August for Danny's 60th and that's more imporatnt to me than anything! The man loves, loves, loves trains, so I booked an actual bedroom on all legs of our trip. We will end up in Seattle and Patsy (older sister-only one who has never had cancer) has big been plans to take us to see the wildflowers on Mt Rainier. And the wildflowers will be heaven for me!

    Anyway, I expect lots of cheery company on this Wednesday the 20th and Monday the 25th (bone scan). Maybe I'll get the tech who tells me kudzu tea cures cancer again. If I do, we will all be laughing so hard they'll kick us out.
  • fauxma
    fauxma Member Posts: 3,577 Member
    #10
    Options
    I just knew that any good
    I just knew that any good doctor would say just what he said. Glad he was supportive and made your making this decision positive. And prayers for good results from the tests. Can't answer to the meds but I know you are a researcher so you will find out all you need to know to make your choices. Big hugs and prayers,
    Stef
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #11
    Options
    VickiSam said:

    C.C. .. the stress and struggles you have been thru
    in order to get to this point, is unimaginable. Getting a 2nd opinion, and researching new med's is enough to make a grown women, cry. I am positive that it has taken a great deal of thought and processing on your part, to switch Health care providers. So I will be there with you every step of the way - day or night. You have my telephone number -- please use it, as I am here for you - my Friend.

    So happy that your Oncologist has been gracious, and informative - thus proving his compassion for you, and your current health situation. Suggestion that you get scans there at the hospital where you work -- is a terrific idea. I imagine all your friends and co-workers stopping by to wish you luck - and requesting that we 'Sisters in PINK' keep the noise levels down. LOL.

    5 days -- equals thorough testing, viewing, poking, and prodding! Wishing you much luck, and success -- as well as STRENGTH during your travels, and doctor visits and medical reviews.

    I do not want to minimize your struggle or pain that you gone thru to get to this point. Wishing I lived closer, so I could be with you -- provide you with gentle hugs, support, a few good jokes, and a surprise visit with Wendy.

    C.C. you have amplify demonstrated a zest for life, support of Women's rights and researcher and provider of many helpful threads for we 'WARRIORS'. Thank you so very much -- Now, it is your time. If there is anything I can do .. Please just ask. :)

    You are so dear to my heart and soul, sweet Friend.

    Lots of love, Support, Prayers and Strength coming your way.

    Vicki Sam

    You are such a sweetheart,
    You are such a sweetheart, Vicki Sam you have brought tears to my eyes! Thank you so much for your unwavering support. Oh, and what is going on with football? Are we playing or not?!
  • carkris
    carkris Member Posts: 4,553 Member
    #12
    Options
    fauxma said:

    I just knew that any good
    I just knew that any good doctor would say just what he said. Glad he was supportive and made your making this decision positive. And prayers for good results from the tests. Can't answer to the meds but I know you are a researcher so you will find out all you need to know to make your choices. Big hugs and prayers,
    Stef

    so glad he was helpful he
    so glad he was helpful he sounds like a great doc. glad you are getting your second opinion and plannig a fun trip!
  • New Flower
    New Flower Member Posts: 4,294
    #13
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    carkris said:

    so glad he was helpful he
    so glad he was helpful he sounds like a great doc. glad you are getting your second opinion and plannig a fun trip!

    Glad to hear
    Glad to hear that your talk went well. So from now can we call you by your real name?
    Good luck at MDA
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #14
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    New Flower said:

    Glad to hear
    Glad to hear that your talk went well. So from now can we call you by your real name?
    Good luck at MDA

    So happy that everything
    So happy that everything seems to be going well.
    Sending love and happy thoughts.
    Hugs

    Wanda
  • New Flower
    New Flower Member Posts: 4,294
    #15
    Options
    CypressCynthia said:

    Thanks to each and everyone of you!
    You are the most awesome women ever and I love you all!!! You don't know how much you all helped me today. Each and every one of you said something to give me courage and propel me forward. I am so excited and relieved!

    OK, now I have my first appointment at MDA, it's September 3.

    I know that is a long way off, but we are going on a very special 2 week train trip to Glacier National Park in August for Danny's 60th and that's more imporatnt to me than anything! The man loves, loves, loves trains, so I booked an actual bedroom on all legs of our trip. We will end up in Seattle and Patsy (older sister-only one who has never had cancer) has big been plans to take us to see the wildflowers on Mt Rainier. And the wildflowers will be heaven for me!

    Anyway, I expect lots of cheery company on this Wednesday the 20th and Monday the 25th (bone scan). Maybe I'll get the tech who tells me kudzu tea cures cancer again. If I do, we will all be laughing so hard they'll kick us out.

    Eileen - denosumab injection
    EiLeen,
    The same compound (denosumab injection) was approved for treatment of osteoporosis under name Prolia http://www.prolia.com/
    My endocrinologist and I look at the information and have decided to wait until more clinical data become available. I do have additional information on this compound, if you are interested please PM me me
    Hugs
  • cahjah75
    cahjah75 Member Posts: 2,631
    #16
    Options
    Oh Cynthia
    I've been out of the loop as to what's going on with you. I'm so glad you like your new onc. I will keep you in my prayers........
    {{hugs}} Char
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #17
    Options
    Lighthouse_7 said:

    So happy that everything
    So happy that everything seems to be going well.
    Sending love and happy thoughts.
    Hugs

    Wanda

    This is great that
    This is great that everything went so well!


    Hugs, Diane
  • romey
    romey Member Posts: 2
    #18
    Options
    Xgeva/Faslodex
    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. And there you were 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 was drawn to your posts for some reason ...Hmmmmmmmmmmmmmmm

    I will post again and hopefully with more information.

    Thank you for bringing me something positive to build on - I am alittle annoyed I have to deal with this at all but am trying to relocate my "safe place".

    romey

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