New here/Have bone marrow mets

jojo68
jojo68 Member Posts: 881
edited January 2015 in Just Diagnosed With a Recurrence or Metastasis

Hi ladies!  New member of new club here!

I had recent bone marrow biopsy (ouch!) which confirmed ILC mets.  I just had my PET today and will know all results next week.  I am pre-menopausal but do not want to take Tamoxifen.  I am possibly considering Lupron then Aromasin?  Any other Als recommended instead?  I am afraid of starting on this roller coaster of switching up inhibitors.  Also, since they only recommend Als for 5 years, what is next then?  So confused and scared...

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2014

    Dear jojo68, we're sorry you have to join this group, and we hope your treatment works well and is kind to you.

    Besides posting here and getting tones of advice and experience from all this wonderful ladies, you may also find interesting to read the article Recurrent and Metastatic Breast Cancer, from the main BC.org site. It is a long section, so you may want to read just a few pages at a time... Maybe starting with this one would help: Stages of Fear After Diagnosis.

    Sending you lots of (((BIG HUGS))).

    The Mods

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2014

    hi jojo,

    Sorry you've had to join us, but there is lots of support and experience on the stage IV forum. The use of Tamoxifen and the AI's are very common for ER+ metsters. All of us seem to react differently to the AI's so I don't believe one may be easier to tolerate than another for any given individual. As far as being limited to 5 years, that's not the case when you have mets. You can stay on them as long as they continue working. I'm not sure what you mean by "roller coaster" , but yes, most of us do try a new one if the prior one fails or the se's become too bothersome. I noticed in another thread that you mentioned youhad back pain. If it's from your mets, a short course of rads can often help. I know your signature line says you are anti-rads but many have gotten great relief from it and, in my case, it completely killed the cancer in my femur. Also, search the stage IV forum as I believe there are others with bone marrow mets and we're just a very supportive group in general. Take care

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  • jojo68
    jojo68 Member Posts: 881
    edited November 2014


    Hi there!  Thanks so much for your reply!  I think what I meant by rollercoaster is just being on and off different types of anti-hormonals etc...Just so worried about side effects, but may be my best choice at this point.  I know I have said anti-rads, but it might be something to consider.  I know I have heard it can be very effective in killing some cancers in the bones.  I have lots of other things to learn now.  Thanks so much!

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  • juneping
    juneping Member Posts: 1,594
    edited January 2015

    Jojo - I am so sorry.....

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