Any advice for a stage iv her2- liver mets friend???

[tricia keegan]

Hi all,

I'm hoping someone can help that may have experienced what my friend is going through now.
She's been stage iv for eleven years, a great achievement but her original hormone and her2 status was wrong and she's just discovered she's now hormone pos and her2 negative.
She's been through most chemo drugs by now but her onc has decided to give avastin, sadly her insurance company have denied coverage unless it's given with a chemo??
Does anyone know if this is the norm or can help me to help her with advice on how to fight this???
Otherwise she will add a chemo but her body is quite exhausted from years of these toxic meds along with many lasting from side effects so her onc felt avastin alone would have been sufficient for now at least.
I just thought if anyone has faced something similar it would be someone on this board and very much appreciate any help you can give as does my friend.
Thank you, she's quite exhauseted and just can't research much herself right now, she lives in Florida not Ireland btw

[Rich66]

My mom has liver/lung mets and is borderline her2 and ER+. I have a voluminous WORD document with lots of abstracts etc I have collected. Many are based on case studies and are not typical. Let me know if interested.

[tricia keegan]

Thanks Rich, it's kind of you to offer and I may take you up on it if needed but what we're really trying to figour out is a way for her to get the insurance to cover avastin alone without more chemo.
Thank you very much for your offer and reply, I appreciate it.

[Becky]

Has she been put on an anti-hormonal now?

[ElaineM]

I wonder if your friend would consider taking Milk Thistle in addition to whatever conventional therapy she decides to take?
I have taken Milk Thistle every day for 10 1/2 years. I never had a liver met and my liver enzymes have never been abnormal.

[tricia keegan]

Becky, yes she's taking faslodex now thankfully but needs a break from chemo but as her onc feels the avastin alone may help she's devastated her insurance company will only agree to cover it WITH a chemo. It seems crazy to me, why pay for two drugs if one will do???

Thanks Elaine thats very interesting and I'll ask her

[jml]

What about Avastin + Xeloda? Xeloda is a PO drug that she could take in the privacy of her own home & but still get the Avastin IV.
Is there a social worker she's working with that can help her appeal the decision - possibly with an LMN(letter of medical necessity) from the Onc explaining her heavily pre-treated history?
That is just CRAZY that insurance will pay for TWO drugs, but not ONE. Makes no sense!

Wow!11 years - that's amazing. Bravo & God bless her.
But my heart goes out to her.
I've been Stage IV since my primary dx - 7 years for me. I've had over 105 rounds of IV chemos & now just switched to Tykerb/Xeloda. My body is tired & my kidneys are weary - after one severe episode of Acute Renal Failure- landing in ICU/hospital for a week and now dealing with decreasing function. I'm chronically anemic & am really just sick and tired of carrying the burden of this disease, treatment, scans, the SE's, the expense, the compromises. Yet ironically feeling blessed and cursed at the same time.

I'll keep her (and all of us) lifted in prayer, that a solution come quickly.

Keep the Faith~

Jessica

[tricia keegan]

Thanks Jessica,it sounds like you know exactly how she's feeling and where she 's at with this. I think it looks like she will appeal although is feeling very tired even to face that right now.
The tumour marker's are off the scale and her bone scan lit up like a Christmas tree and yet she has no pain, just constant fatigue.
I'll certainly mention the xeloda to her, thanks so much for the suggestion and I'll also be praying you both get a break from this
Well done on seven years though..what an achievement for you too and inspirational to other's how hard we can fight when needed