Stem cell transplant / Terrified

Glow
Glow Member Posts: 41
edited March 2014 in Breast Cancer #1
Hello. I am a 53 year old diagnosed in September 97 with breast cancer. 7/10 nodes were positive and estrogen receptor positive. I had a lumpectomy, lymph node dissection and 8 cycles of CMF-Adriamycin. Because of high risk of recurrence, I also had high dose chemotherapy and a bone marrow transplant. Because of MANY complications from the transplant, I was NOT a candidate for radiation. I was put on Tamoxifen (tumor markers went up) Changed to Femara (tumormarkers went up) changed to arimidex (tumor mrkers went up)Bone scan + for mets to spine. I went on Xeloda for about 16 months during which time the markers stabelized/ In 9/2002 the xeloda was no longer working so I went onNavelbine for 3 months (no help). I went on Gemzar and Carboplatin in January this year and things were going well (until today). There is new mets to the spine, L hip and liver. Is anyone receiving any chemo or therapy that I have not had yet. I really need to understand where I go from here. My doctor is amazing but; I am not sure even he knows where to go from here. Please help me. I am terrified.

Comments

  • mc2001
    mc2001 Member Posts: 343
    #2
    Glow,
    I am sure you have a lot of faith in your physician. However, if you are not already being treated at an NCI Comprehensive Cancer Center, maybe it would be something to look into. I was treated at UCSF Comprehensive Cancer Center. I just about had every side effect from left field and they were able to deal with that. Try to find one in your state. if you have problems with that, email me here: mc2001
    -Michael
    PS: Tell you doctor how terrified you are and see if he can prescribe something to help you relax a little. Makes a big difference. :-)
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #3
    Are you getting a stem cell transplant? I'm confused, email me. God bless. hummingbyrd
  • ksfc
    ksfc Member Posts: 251
    #4
    Glow - I don't have any wonderful suggestions -just wanted you to know that you'll be in my thoughts and prayers. It sounds like you've been doing everything right and you're darn cancer just isn't cooperating. If you haven't done it, I would second the idea of getting an opinion from one of the NCIs. I went to the University of Nebraska health systems when I was first diagnosed. They're used to doing second opinions
    and for some of it you don't even need to be there. Take care of yourself and if you're feeling too anxious, talk to your doc about it. There are a lot of meds to help - it's okay to need help. Diane
  • Glow
    Glow Member Posts: 41
    #5
    hummingbyrd said:

    Are you getting a stem cell transplant? I'm confused, email me. God bless. hummingbyrd

    Sorry Hummingbyrd...I'm a little confused myself. I had the transplant in 1998..at that time it was supposed to be "the cure". Now that I have recurrence despite many other drugs I am worried that it's the beginning of the end. Morose I know but it's what I feel. Thanks for responding. It;s nice to know someone is listening.
  • Glow
    Glow Member Posts: 41
    #6
    ksfc said:

    Glow - I don't have any wonderful suggestions -just wanted you to know that you'll be in my thoughts and prayers. It sounds like you've been doing everything right and you're darn cancer just isn't cooperating. If you haven't done it, I would second the idea of getting an opinion from one of the NCIs. I went to the University of Nebraska health systems when I was first diagnosed. They're used to doing second opinions
    and for some of it you don't even need to be there. Take care of yourself and if you're feeling too anxious, talk to your doc about it. There are a lot of meds to help - it's okay to need help. Diane

    Thanks for writing back Diane. It always helps to know someone is listening. I don't knowif NCI has facilities in New York but....I'm sure going to look into it. At least it's a place to start. Thank you so much. Prayers for you and all in this race. Glow
  • Glow
    Glow Member Posts: 41
    #7
    mc2001 said:

    Glow,
    I am sure you have a lot of faith in your physician. However, if you are not already being treated at an NCI Comprehensive Cancer Center, maybe it would be something to look into. I was treated at UCSF Comprehensive Cancer Center. I just about had every side effect from left field and they were able to deal with that. Try to find one in your state. if you have problems with that, email me here: mc2001
    -Michael
    PS: Tell you doctor how terrified you are and see if he can prescribe something to help you relax a little. Makes a big difference. :-)

    Michael, thank you so much for responding to my post. I don't know if NCI has facilities in NY but I am sure going to look into it. I hope you are doing well & will keep you in my prayers (and all of the other amazing people on this site). Glow
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #8
    Hey glow, have u tried Iressa? It's a chemo drug, read an article about it today, sounded pretty good, wish I had article here I'd give you more details. Plus have u had a hysterectomy? Read today hys reduces mortality rate like 50% more than estrogen suppressive drugs alone in patients who are ER+, for those of us who have mets. ALSO...are you HER2/neu if so you should really ask your doc about Herceptin. It's a monoclonal antibody that fights the HER2 tumor cells...AND you should be taking zometa every month to build your bones unless u are allergic to it.
    OK...there's my advice, its free, so take it for what its worth. LOL God bless, hang in there girl, I'm praying for you. hummingbyrd
  • blossomtime
    blossomtime Member Posts: 98
    #9
    I just wanted to let you know I will be praying for you. I just had my first year anniversary and am very concerned about recurrence. I initially had second opinion at MD Anderson but had all my treatments in my hometown. I am now finished with treatment but my doctor suggested going back to MD Anderson for followup to see if anything different should be done. Just hang in there. May God be with you.

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