Metastatic Breast Cancer treatment options

So palliative care can be for pain relief and comfort during treatment, in my understanding. The patient is still on regular Medicare or insurance.

Hospice care is for when you have stopped treatment, and there is special hospice Medicare (or if under 65 regular insurance).

It sounds like in your area maybe "palliative" care is only for hospice patients. In our area we also have "bridge to hospice" which is palliative and starts you with hospice nurses and aides so that transition is quick and easy when treatment ends and hospice begins.

Palliative and hospice services- either- are very helpful and supportive. Can you talk to an area hospice organization about beginning palliative care? Studies have shown that people get a little extra time with this support, and there is a lot of support for you as well. (Once on hospice, support for you and her includes a nurse, social worker and chaplain to talk to.)

@tucsonmike -
Have you gone outside the Duke system for another opinion? Since your wife’s diagnosis has such a poor prognosis it might be a good idea to be able to confirm that the treatment is the best.
There is the Mayo Clinic system and other large top rated cancer centers in this country.

We have discussed this. She only just completed her third chemo round. We have Wake Forest University medical center, and the University of North Carolina medical center both within driving distance. Although we do consider Duke University top notch.

@tucsonmike
I agree that Duke is top notch.
It’s just that I believe in second opinions when it comes to serious illnesses. I had breast cancer 31 years ago. I was at a very good university hospital but I wanted a second opinion.
My oncologist helped me find one at Sloan Kettering. They agreed on my treatment plan so I was satisfied.

@tucsonmike
Chemo definitely destroys your appetite. My go- to foods were bread and hotdogs. I didn’t get any dietary instructions.
It would be helpful to find out what one can eat that has some nutrition.

Thank you so much for that clarification, it was very useful. Apparently the oncologist does not know that. I called BCBC because I’m still covered by insurance at work, and they do cover for that care.

Palliative without hospice was very helpful to us. I hope it is for you. Then we moved to hospice seamlessly so you can ask about how that will work.

Again moving to hospice signals that chemo has stopped but doesn't have to signify imminent death.

I was on Ibrance ans Letrozole for 8 months and tolerated it well. My taste buds suffered a bit, food tasted wrong as in sweet things bitter, salty things sweet, etc., nothing big. But my white blood cell count was very low even that I felt well and so I had to take breaks, also twice was changed to a lower dose. I had hoped to stay on it for years but although it worked well on my bones and cleared the lung, I developed multiple new spots on the liver. So I’m on Xeloda now which I find very hard and wish I could have stayed on Ibrance! It’s quite brilliant.

Hello @tucsonmike ,
Today, I met someone living with inflammatory BC since 1994 and could not run fast to my computer to write you. Her name is Ginny Mason. They gave her 12-18 months at her diagnosis. She is the executive directory of Inflammatory BC Research Foundation.
Here is a long interview made with her:
https://www.futuremedicine.com/doi/full/10.2217/FON-2021-0739
IBC Research is at: https://www.ibcresearch.org/
Perhaps you can contact them about your questions?

I wish you and your wife hope and strength in this journey.

Thank you so much. Everything has been grimmer and grimmer. Since they stopped chemo and just went to antibodies her new scan shows more lesions in the thoracic spine and nodules in the lungs. So new info may help us find the resources we need.