Sep 22, 2017 07:42AM 50sgirl wrote:

Z, I am sorry to hear about your progression. Take some time and rant, mourn, have a pity party or whatever you need to do. As you well know, there are lots of other treatments available. When will you and your MO settle on your next treatment plan?

Hugs and prayers, Lynne

Sep 22, 2017 08:10AM PHOTOGIRL-62 wrote:

Z, I'm so sorry you have this progression. It really sucks to have to start another TX. I think you now, but my DH is a Radiologist. His 68 and did his internships and residence at Harvard so in my opinion he's a real smarty and from the old school when Docs were kind and caring. He's the best and always goes over all of my medical stuff. Slightly OCD. So this morning when I read your post asking if anyone knew what portahepatic adenopathy was he wrote it down so I could help you. He reads CTs and everything else so he knows. These are his words he wrote down for me "Porta hepatis adenopathy is enlarged or abnormal lymph nodes near where the vessels enter the liver and where the gallbladder and common bile duct sit adjacent to the liver."

I hope this helps you understand you are so smart I love reading your posts, but if you ever have any questions let me know and I will ask the good doctor. He enjoys when I ask him always willing to answer questions.

I'm sending you hugs and vibes to keep your spirits up. I have such anxiety all the time so I know how you feel. Keep us posted on your next TX.

Love,

Anita

Sep 22, 2017 09:36AM zarovka wrote:

I got the results yesterday. I haven't talked to my local MO since seeing the results online, but her treatment protocol after ibrance/letrozol fails would be faslodex alone. Faslodex is a reasonable option as well as the NCI standard of care for second line treatment. I can see going on faslodex at some point, but any hormone suppression strategy is really just kicking the can down the road while living scan to scan, as Kathy described so well.

Hormone suppression has been hard and is undermining my overall well-being while Ibrance slams my immune system, ultimately making me more vulnerable to this evolving beast. I think there are only two strategies that could potentially give me years rather than months on a line of treatment and those are oncolytics and immunotherapy. Oncolytics involves unleashing engineered viruses on your cancer and is early stage everywhere in the world, so that leaves immunotherapy.

I would be on a plane to the NIH to be vetted for their remarkable suite of immunotherapy trials if I had not found a solid option in Japan in a clinical setting. I feel there are advantages to getting treated in a clinical setting, and my daughter is fascinated with Japan. Every school project since she was 8 has been about Japan. I'd like to believe that my little munchkin has been leading me to a good treatment option.

Anita - Thank you for that explanation as it is clearer than what I get from the web. It doesn't mean the vessels are obstructed, it just means there is a risk.

>Z<

Sep 22, 2017 11:51AM Max_otto wrote:

Z,

What does Japan offer in a clinical setting that you would choose this over a another hormonal treatment or a NIH trial?

How would you handle follow up treatment or care?

All of us would like to stop this invasion into our liver, I find it emotionally rough , knowing chemo is down the line. One plus of faslodex , my blood work is back to normal.

Thanks for your research, I appreciate your effort and time.

Kathy

Sep 22, 2017 12:06PM zarovka wrote:

Kathy - I will write up what I am doing and why and what is involved. Not ignoring you just scrambling to get a liver biopsy this afternoon, if you can believe it. Ms. Ready for Everything was not ready for that.

>Z<