TIL post

[Snowcone16]

I’m not sure if this is legit but saw at another board. I believe the trial is legit but don’t know if this person is actual patient.

PS-I like this board better

[nstonerocks]

Thanks for sharing this. I am not on other mbc boards so nice to have this info. Initially I felt so hopeful knowing there is a cure out there. Right now I wonder if the cancer centers will start gearing up for treating us. I wonder if this treatment will be available for me. Have to go work on my optimism. Still, great news for the future of cancer care. Imagine, not losing your hair, not feeling sick or joint pain or facing the gut wrenching emotional turmoil of this disease. Imagine not being told you have an end stage disease. I think if they ever told me I was cured, I'd be in shock for a while. I might go a little crazy and hop a plane to Paris, go to the top of the Eiffel tower and scream my head off with a bottle of champagne. Or maybe I'd do the champagne and screaming before Paris. Anyway, nice to imagine it.

[Snowcone16 in reply to nstonerocks]

Yes, I actually wrote in my journal today. If this comes to fruition, it’s like winning the lottery. I google a lot so landed at that board. Personally, I didn’t join because it seemed a bit depressing on that board. It’s okay to be depressed but I need to surround myself with positive people and positive thoughts...maybe that approach changes later. But at 4 months into the MBC diagnosis, that’s my thoughts.

It’s funny, because I wonder what stops me now from going to Paris, right? I guess just trying to maintain norm for now.

[nstonerocks in reply to Snowcone16]

Snowcone. Go to Paris!!!! I am almost 4 years in to this disease. I’d been petrified of flying and hadn’t been to Europe in almost 40 years. When I got this diagnosis, after I pulled myself back together, I started traveling as much as I could. My onc told me about one of her patients with mbc for 10 years who was traveling all over, and something struck a chord. I never had the urge to go to Paris, but a little voice in me said “go to Paris” and I did. I’ve been twice in the last few years. It is heartbreakingly beautiful. The people were friendly. It’s just a more reserved and formal culture there, and I came to appreciate it. There is nothing like a boat ride down the Seine at night with all the lights of Paris twinkling. Since France I try to travel to Europe every summer. I’m not rich, but I’ve made it a priority. Planning these trips has helped keep me stay sane. This summer I’m going to Ireland. Was there those 40 years ago. Even if I don’t escape this damn disease, I am going to experience some of this great world of ours. Even Cancer can’t steal my memories. Just go. You’ll pinch yourself when you’re u stand under the Eiffel Tower

[Snowcone16 in reply to nstonerocks]

Oh, I’m taking vacations. I just got back from Hawaii and there were many moments that I forgot the diagnosis ‘n. I’ve got Utah and cruise to Alaska on my list. Want to see Utah in fall and Alaska next summer. Once I check Alaska off, then I’ll start looking into other trips. Hawaii again or Grand Cayman. I did Paris for work so maybe Italy, Spain or Greece when I add Europe to my list. ❤️

[nstonerocks in reply to Snowcone16]

I’m preaching to the choir! Alaska on my list too. Thinking of a small ship cruise.

[lisafromatx in reply to Snowcone16]

You must go to Kauai...as close to Heaven on earth as I can imagine! So much beauty there. I was amazed!

[Snowcone16 in reply to lisafromatx]

I’ve done Oahu twice but definitely open to the other islands (after the volcano is dormant!)

[Wintervt]

Snowcone16,

This is definitely legitimate! I am part of the MBC online community that adventureswithcancer is a member. It is all over the news, Google: Judy Perkins. Here is an NPR article I read two days ago. npr.org/sections/health-sho...

I contacted the NIH yesterday and received an immediate response regarding the trial.

Best,

Jade

[Snowcone16 in reply to Wintervt]

That’s awesome!!! What did they respond?

I emailed the dr on the 5th but didn’t hear anything. I know he probably has tons of emails now. My email was like 10 sentences asking to participate when the trial is expanded.

🤗

[Esl2008]

I have a connection to and have emailed with Dr. Rosenberg. He received my case and said I am on exactly what I should be on for bone mets (Ibrance, faslodex, kupron, and Zometa). He told me to reach out to him if/when treatment stops working. This is definitely experimental, and some women died on the trial. I have my monthly appointment at Hopkins next week, so I am interested in hearing my oncologist's thoughts.

[Snowcone16 in reply to Esl2008]

That’s great! I emailed him the morning after breaking news. I assume his mailbox was flooded with emails. I just asked when they expand the trial that I be considered for participation. He has lots of trials he is heading. I’ll keep an eye on that website like a hawk! 😊

[Epinto]

Why do u think this is not legit?

[Snowcone16 in reply to Epinto]

Oh, I think it is. But I know some skeptics might say “don’t believe everything you read on Internet”

[Joan37]

Please read this: linkedin.com/pulse/metastat...

[Snowcone16]

Yeah, I saw that on my FB feed. Was a downer. Nothing wrong w having hope and celebrating small steps; progress; the fact that MBC trials and conversations are happening.

I’m staying positive. ❤️