I've been reluctant to say anything because this is SOOOO far away for you, but just for you to have in your research pile, The Angeles Clinic here in LA has saved my husband's life and given him a reset for multiple cancers after his onco at UCLA gave up on him. For your reference, here's the site:
Dearest Jennifer - I'm so glad to hear you met with a doctor that is willing to look for new doors and windows. You've climbed mountains and run marathons: you deserve a care team that when they see a wall, they do what must be done to move it-- whether that be finding a path through, or grabbing a fucking sledgehammer. I've been doing my own searching and speaking to friends. Even if care in the US isn't possible ("she should move back here" was the immediate advice from one oncologist friend here), that doesn't mean you can't benefit from the knowledge and research happening in places like MSKCC. I know you are already researching this, but my friend mentioned cell based cancer therapies that have been approved here: In addition to CAR-Ts, there's TILs, CER-Tas and BiTEs (and no, I don't have the medical or scientific expertise to walk you through those, but it seems these are the future when it comes to treatment.) I can ask around more. I know a number of researchers at MSKCC through Mikey's school (it seems half the parents work there). It is a global community, as the best minds travel from all over the world to work there and in many cases bring their experiences and knowledge back to Europe, China, Israel and elsewhere. It really is a global community, even if the hospitals in the US are limited by our screwed up healthcare system. I'll keep asking. Sending love and a big freakin' sledgehammer. Posrock
Dearest Posrock. Thank you for this. I appreciate you researching! I am currently trying to get an online consult with MSK, but they need my medical files translated so Tim is working on that (it is insanely expensive to get a professional translator). I hope I can at least talk with someone there about options. As you know, moving back to the US feels pretty impossible for us for all kinds of reasons - mostly financial, but also because of Theo needing to be in school (and we only just found her somewhere she likes!) and because we have nowhere to live etc. But I am not ruling anything out. Thank you for talking with the parents at Mikey's school who work at MSK. I am sure my new oncologist in Paris stays current with what is going on internationally, and will discuss this with her too. Thank you for being in touch and for researching and for being the Posrock I have always loved. xoxo
During my cancer I prepared for the worst - affairs as ‘in order’ as I could manage, end of life instructions written and clear, enduring power of attorney for husband and two of my children, even a funeral playlist on Spotify. That one was actually fun and I edit it often.
But oddly - that stuff helped. It left me feeling that now I could get better and I did. Breast cancer comes with more in-built hope.
I’m thrilled that you have found a doctor who has been prepared to fight for you. I’m thrilled that your beautiful daughter is really happy as that must be such a relief.
There’s so much here to be thrilled about! So happy Theo is loving school and thriving there in a warm community full of likeminded kids. That’s amazing. And thrilled that this wonderful doctor is so positive about getting you enrolled in a trial.
I am so sorry for what you are going through and for all the fear and uncertainty you live with every day. I continue to send healing thoughts your way all the time. (My mom also thanks ChatGpt for help!) Please keep the faith and keep us posted!! Xoxoxox
So glad you did not succumb to the brick wall doctor. Assuming nobody would want to put in the effort to travel and get a second opinion! Well, nobody is not YOU!
Sending love and hugs 🥰
This is very good news, Jennifer! Stay strong!!!
I've been reluctant to say anything because this is SOOOO far away for you, but just for you to have in your research pile, The Angeles Clinic here in LA has saved my husband's life and given him a reset for multiple cancers after his onco at UCLA gave up on him. For your reference, here's the site:
https://www.theangelesclinic.org/
Thank you, Aimee. It never hurts to have more information! I am grateful that you think of me. Love to you. xo
I am thinking of you and sending much love.
So happy to read this.
Dearest Jennifer - I'm so glad to hear you met with a doctor that is willing to look for new doors and windows. You've climbed mountains and run marathons: you deserve a care team that when they see a wall, they do what must be done to move it-- whether that be finding a path through, or grabbing a fucking sledgehammer. I've been doing my own searching and speaking to friends. Even if care in the US isn't possible ("she should move back here" was the immediate advice from one oncologist friend here), that doesn't mean you can't benefit from the knowledge and research happening in places like MSKCC. I know you are already researching this, but my friend mentioned cell based cancer therapies that have been approved here: In addition to CAR-Ts, there's TILs, CER-Tas and BiTEs (and no, I don't have the medical or scientific expertise to walk you through those, but it seems these are the future when it comes to treatment.) I can ask around more. I know a number of researchers at MSKCC through Mikey's school (it seems half the parents work there). It is a global community, as the best minds travel from all over the world to work there and in many cases bring their experiences and knowledge back to Europe, China, Israel and elsewhere. It really is a global community, even if the hospitals in the US are limited by our screwed up healthcare system. I'll keep asking. Sending love and a big freakin' sledgehammer. Posrock
Dearest Posrock. Thank you for this. I appreciate you researching! I am currently trying to get an online consult with MSK, but they need my medical files translated so Tim is working on that (it is insanely expensive to get a professional translator). I hope I can at least talk with someone there about options. As you know, moving back to the US feels pretty impossible for us for all kinds of reasons - mostly financial, but also because of Theo needing to be in school (and we only just found her somewhere she likes!) and because we have nowhere to live etc. But I am not ruling anything out. Thank you for talking with the parents at Mikey's school who work at MSK. I am sure my new oncologist in Paris stays current with what is going on internationally, and will discuss this with her too. Thank you for being in touch and for researching and for being the Posrock I have always loved. xoxo
Think of you often, so glad to hear about this beacon of hope in Paris. Much love to you and your Ts xx
Thank you for this post, Jennifer, with the good news about Theadora and Dr. Leary. Very glad to read it.
I loved this post. Hope is back.
During my cancer I prepared for the worst - affairs as ‘in order’ as I could manage, end of life instructions written and clear, enduring power of attorney for husband and two of my children, even a funeral playlist on Spotify. That one was actually fun and I edit it often.
But oddly - that stuff helped. It left me feeling that now I could get better and I did. Breast cancer comes with more in-built hope.
I’m thrilled that you have found a doctor who has been prepared to fight for you. I’m thrilled that your beautiful daughter is really happy as that must be such a relief.
Jennifer- If everyone has a form critique like Gizzy, the day would be slightly better. Hope you’re well this week? Cheers, Thalia
There’s so much here to be thrilled about! So happy Theo is loving school and thriving there in a warm community full of likeminded kids. That’s amazing. And thrilled that this wonderful doctor is so positive about getting you enrolled in a trial.
I am so sorry for what you are going through and for all the fear and uncertainty you live with every day. I continue to send healing thoughts your way all the time. (My mom also thanks ChatGpt for help!) Please keep the faith and keep us posted!! Xoxoxox
Okay! Here we go! So glad to hear you have new ideas and someone willing to help you pursue them.
YES. That’s the kind of expertise and attitude we want!!!
Hey, I can't think how long it's been since anyone has called me young and fit-bravo for the heartening news and for pursuing this further.
I will call you young and fit! You are young and fit, Cat. It was so good to see you in Paris. Hope to see you there again soon! xoxox
So great to read this, Jennifer. Sounds like you found the right doctor.
So glad you did not succumb to the brick wall doctor. Assuming nobody would want to put in the effort to travel and get a second opinion! Well, nobody is not YOU!
Lots of good ideas! I already love this person!