What happens after Ibrance/Femara stops working?

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Bailey5
Bailey5 Member Posts: 63
edited April 2020 in Stage IV/Metastatic Breast Cancer ONLY

hi! I realize that some people do not want to look forward to the details once Mets are no longer “progression-free"; but I've been awake most nights thinking of the horror that lies ahead; not only for me; but for my show, 21 yo dtr & 19 yo son. I think it'd be helpful for me to know where this is all going for me (eventually; I realize that my body will succumb to the cancer I've now “fought for 10+ years.
mid love for anyone who is comfortable sharing any and all details that they are comfortable with; realizing that no two are exactly alike. I'd love to know also any tips or tricks (ie. Letters and memory books to leave for those I'll leave behind—I'm not the most focused person—so step-by-step would be best help to me) on trials/tribulations, accomplishments, what to pack for unexpected hospitalization(s); special memories to create (perhaps something I can do for my 3 most important people while I'm still able without it being forced or to planned; perhaps conversation starters, day trips, classes); it seems that in 2,5 years on Ibrance I realize each day together matters so much—but life goes on for my family-as it should be; I'm not outwardly I'll-though I do suffer some both physically/mentally & lately cognitively-but brain scan is clear x2!)
I should also mention that my br cancer spread to lymph and lungs & I started Ibrance/Femara combination 11/2017 and have been NED for 1-year. I feel ambivalent (for lack of better word) about this situation—grateful for every second these meds have given me and ungrateful for what having stage 4 has taken fron me (&my family)—not complaining at all as I know I'm very fortunate for being in NED; but sometimes I feel I guess I'm standing on edge of a cliff as I know how things can change quickly & progression is obviously what scares me most.

So if I could be enlightened on the unknown by shared experiences I think it may be therapeutic not only to me but to others who may hear only “we have a whole sleigh of meds to try after Ibrance"; it's comforting; but I guess it's the PTSD part of this whole disease/treatment course that keeps me up wondering, worrying...maybe help me to plan for worse times will comfort her, others in my shoes; but I'm hoping also it'd be therapeutic for those who have “walked" ahead of me to share their stories experiences planning with sense of pride. I don't think anyone could ever understand things unless try hee Re uve been in their shoes—maybe that's why doctors don't share the “what's next, then after that, etc. Any help with formalities like health care proxy, wills, end-of-life care decide Zion's, right-to-die (I live in California-recently relocated and do not onowww what laws are here regarding that choice—which I'm on fence about) after death arrangements (I'm catholic—but don't think I want traditional wake/fune Real—perhaps freama Tison; scattered on ocean-cruise or similar with small memorial service (our extended family/friends are all in Boston—so I don't know how logistics of all that'll ply out; but I'd like to have that all set to make things easier on my family & I can't even think of having them suffer watching me pass as I've been through that with 3 very close people in my life; I know how I felt and how the dying person felt and I know it isn't pretty—so I'd like to do whatever I can to make things easier for my family (husband is 55 & children are in college—I'd hate to be a big disruption to them during my end-stages. I'm so, sorry for the long-winded explanation—and also for everything everyone else is going through. Best wishes for strength and much happiness and comfort going forward to all. Thank you all in advance for your thoughts, humor, sorrows and the difficulty it may take for you to share and spell-out things to come as I know it's hard to put it in black and white. I send love and strength and thoughts and prayers to all

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