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Jan 12, 2018 03:58PM
Am glad to find this thread and like-minded people. Background, some of you remember me from years ago. I have been back and forth, trial and error on treatments. My first choice was DIY for 5 mo. Then I had surgery but only that and DIY alternatives for a few years. Then found an oncologist that respected my actions and choices. I did concede to go on hormone therapy Faslodex / Arimidex. And back to DIY. And fail mostly bcz I was resting on my laurels. And then Ibrance / Femara. And it quit and bit me in the arse. Then Xeloda and it never had worked it seems, per one onc but others said mixed response. The last choice was for 8 loyal months and I was afraid to let it go since I had been almost suffocated by the cancer masses. But I have let go. Took Aromasin for two weeks, stopping or not, I don't know. It may not be best w the alternative choice I have made, researching more now.
Through it all, I forgoed any chemo infusion. Radiation too except when the cancer masses were closing off my airways in two places. My oncologist from year 3 until May 2017 finally left the area to train under a holistic doctor so he could become a better oncologist, he had just seen too much. I feel like he spared me suffering and anguish though because he was never in a hurry to get me into chemo or radiation, my system has proven far too sensitive for the usual anyway.
The next oncologist I fired in one appointment told me to get in touch with hospice and basically had nothing for me but palliative tthat would certainly do me more harm than good, esp when I was so weak after Xeloda.
The latest oncologist I went to at the end of 2017 asked, did you this? and that? at the beginning? and I said no. He said that is the standard of treatment. I flippantly said, I am not going to be your standard patient. I think we will get along pretty well, regardless.
So I stood back in the last few weeks. Hospice? Palliative chemo or radiation? Or alternative? Palliative w alternative? Complementary? What?
Two nights ago I decided on alternative with palliative and go ahead and get hospice set up and settle my affairs and get the notebook ready for in case I die so my family will know where everything is.
Embrace it all, wtheck? Why not.
Prepping will be done if I die and done if I don't.
I am at complete peace with the decisions I made and already ordered the alternative choice. I am so glad Hubby is behind my choice.
He inspired me when we were at the counselor's office at the cancer center. I asked him how he was doing with this acceptance of hospice and getting everything set up. I was still thinking chemo or radz that day. Hubby said to me, I still think you can beat this. I knew he meant w alternative bcz we know at stage iv the chemo and radz is not going to "cure anything" and may just help it all along for worst coming to worst. And he was being real w me. I said, well that is not giving up, it is continuing to try. I knew I would do both, prepare for death and the end while still trying. Palliative will be needed too, in some ways.
The next night I got out a book I have read several times and came across a treatment that I had always thought I would try but in getting caught up in the conventional treatment, I never had. And I decided that was the one, it complemented the ellagitannins I use now, I could do it, afford it and so I ordered it with him cheering me on.
I am glad to see this thread has 5 pages and remains active. This will be a safe haven for me.
"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane
7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2-
4/4/2017 Xeloda (capecitabine)
External: Lymph nodes
Lumpectomy: Right; Lymph node removal: Left