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Ihopeg
Ihopeg Member Posts: 399
Here are the results of bone biopsy and new cytology report as I understand. Stage 4 breast cancer to spine ER+/PR- Her2 - . No cancer cells in spinal fluid near brain right now due to leptimeningeal disease. Again she was rude and spoke to a dr on the phone for 15 min during my spot about another patient. She wanted to put me on femara again even though if didn’t work for the 5 yrs i was on it . She prescribed faslodex, verzenio.i will not start until my team at penn concurs. I go for spinal tap again this week. Have no faith in her and will not be returning? What’s everyone’s thought on treatment? Also should I have my other breast removed? Thanks Ilene

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2018

    Ilene- Were you still taking Femara when you discovered the mets? Because, if not, it was undoubtedly working for the five years you did take it. By ruling out a Femara-Ibrance combo, you might be opting to skip a treatment that could work for potentially a long time, and jump ahead to Faslodex that would otherwise be a secondline treatment. This is definitely not the doctor for you (or anybody!) however don't let that bad experience and the stress of the current situation determine your course of treatment. You are of course desperate to get on something that will get you to stable so you can better assess what to do with the diagnosis, but in the big picture it is important to keep on anti-hormonals for as long as possible. If you were on Femara when your cancer recurred, it is still possible you might respond to the Ibrance-Femara combo (many stil do) but in such a situation it would be important to get genetic testing for the cancer in order to understand what type of mutation caused the cancer to escape Femara. In that scenario, you could either have an estrogen receptor mutation, which would mean you have to move to some Faslodex combo, or if you had a PI3K mutation then you would want to consider the trial of Faslodex and Alpelisib combo. For CDK4,6 inhibitors, the Versenio has diarrhea side effects that Ibrance does not have, you might want to research it before starting, in case Faslodex-Ibrance combo might be easier. I well understand the urge to bang hard on the cancer, but the strategy is to live well and for a long time (and not die) of this disease. So its worth the time and effort to fully explore the options and consider next steps.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited October 2018

    wonderful information from cure-ious.

    I would like to add my vote for NOT removing your other breast. It won't make a difference, you are extremely unlikely to get bc in the second breast, and I regret losing my healthy one, because now I have none....and I miss them terribly.

    Sunset

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited October 2018

    I'm 57, and resent having the other breast just hanging around. My PS wouldn't even consider taking it, and even though I said I wanted to be smooth where the cancerous breast was, she left some floppy skin in case I wanted to reconstruct. I was Very Clear that I didn't want to. We were self paying for the surgery because we had super bad insurance. She was giving us a reduced rate, so perhaps she wanted to do what was fastest and cheapest for her too.

    Every month when I have the check-in with my MO, I get my breast poked and prodded. I don't like it.

    I mainly go braless, but last summer I ended up with a whopping fungal mess under uni-boob. I was hot and sweaty a lot. The only bras I can tolerate are cheap cotton sports bras from Walmart, sized up several sizes so that it functions more as half of a stretchy tank top.

    I had a really good time with my boobs, before the whole cancer thing. But now, uni-boob is an albatross. The only good thing about having a boob is that it keeps knits from clinging on my Buddha belly, on one side.

    Good luck on your next spinal. I've only had one, and they are tedious.

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