Dr. Painter was our lifeline, via the FB group she mentioned, when our sister was diagnosed with angiosarcoma. It is impossible to put in to words what this incredible woman has done to support both patients and their families who have been impacted by this disease. Thank you for shining a light on her selfless works.
Omg! I love her this is so great to hear. I have stage4 breast cancer and I joined this last year the Mbc project I’m so excited to know more about who started it… I was diagnosed in 2020 as early stage, but as they scanned me, they found out it was in my bones. I had no symptoms I’m de novo ERPR positive now low her2. This is so exciting. I’ve been on Letzorole since March 2021 with very low side effects. So far I get a scan every six-month CT scan and I get a liquid biopsy every three months for my mutation to be watched. I would love to help in any way to further research!
I’m sorry you have to go through this at such a young age. My lil sis was diagnosed with Angiosarcoma this year but we were told there isn’t a cure for this. May God be with you and your family
Fibrolamellar liver cancer. It effects one in five million people mostly young people with healthy livers. I have been fighting it for six years and I down to 30 percent of my liver left. The first chemo cocktail didn't go well with my jaws locking up with pain. I believe that there are two things that might save me: 1. High frequency sound vibration, which the FDA refuses to approve, except in one isolated case and 2. Lying on a beach in Florida just consuming bone broth for some electrolytes until one of else dies. I am 75 and unfortunately don't have the money for either.
I use to have money, until Bush and Obama bailed out the Wall Street banks and incompetent States and bankrupted 5.1 million small business owners to help pay for it.
I hope this comment finds you and your family well. But listen to me when I say PLEASE do not EVER give up hope. I was diagnosed with stage 4 hepatic angiosarcoma 18 months ago. It has been an absolute rollercoaster. I began a chemo about a month later and early on (I'd say first 6 months of my treatment) I reached multiple points where I thought "I guess this is what death feels like." I had so many negative health experiences one after the other that I kept a running list to review with my oncologist every chemo cycle. Maybe it's my stubbornness but I literally refused to let this be my end - consulted many doctors, dealt with many financial/insurance issues, entertained continual modifications to my meds, put more trust into my care team than I ever have for any doctor (or God for that matter). Now I feel my chemo/meds have really been dialed in to tame the worst side effects and symptoms. And what I've learned is that my experience in this whole journey is not what I expected in the beginning. It's been totally different from the handful of case studies I could find, which were also very different from each other. As time goes on and my scans have shown this "highly agressive" cancer to be pretty stable in my case and changes are made when needed, I now feel I could continue this battle forever. My point is that 18 months later I am I'm a totally different place both physically and mentally. The doom and gloom of the initial diagnosis has worn off by now. I am nobody special and never possesed peak health in my life so literally anybody can beat this damned thing if I'm able to have even the slightest success. Keep on fighting ❤
Check Dr. Painter projects:
➡The metastatic breast cancer project: mbcproject.org/
➡Count Me In: joincountmein.org/
Dr. Painter was our lifeline, via the FB group she mentioned, when our sister was diagnosed with angiosarcoma. It is impossible to put in to words what this incredible woman has done to support both patients and their families who have been impacted by this disease. Thank you for shining a light on her selfless works.
Thank you for interviewing Dr. Painter, she is so relatable, intelligent and making such a huge impact in our world!
What a delightful person! God bless her!!
Omg! I love her this is so great to hear. I have stage4 breast cancer and I joined this last year the Mbc project I’m so excited to know more about who started it… I was diagnosed in 2020 as early stage, but as they scanned me, they found out it was in my bones. I had no symptoms I’m de novo ERPR positive now low her2. This is so exciting. I’ve been on Letzorole since March 2021 with very low side effects. So far I get a scan every six-month CT scan and I get a liquid biopsy every three months for my mutation to be watched.
I would love to help in any way to further research!
Thank you for your comment!
i’m 17 and recently diagnosed with metastatic angiosarcoma with about 6-12 months left to live.
Thank you for your comment. We hope the video was helpful.
My dad was just diagnosed. May you find strength
I’m sorry you have to go through this at such a young age. My lil sis was diagnosed with Angiosarcoma this year but we were told there isn’t a cure for this. May God be with you and your family
There is always hope. Have you tried City of Hope? I pray rhat God heals you. 🙏
Fibrolamellar liver cancer. It effects one in five million people mostly young people with healthy livers. I have been fighting it for six years and I down to 30 percent of my liver left.
The first chemo cocktail didn't go well with my jaws locking up with pain. I believe that there are two things that might save me:
1. High frequency sound vibration, which the FDA refuses to approve, except in one isolated case and
2. Lying on a beach in Florida just consuming bone broth for some electrolytes until one of else dies.
I am 75 and unfortunately don't have the money for either.
I use to have money, until Bush and Obama bailed out the Wall Street banks and incompetent States and bankrupted 5.1 million small business owners to help pay for it.
I have angiosarcoma. And I am going to die because I can't get a PET scan or and MRI to just start treatment. Furious right now.
I hope this comment finds you and your family well. But listen to me when I say PLEASE do not EVER give up hope.
I was diagnosed with stage 4 hepatic angiosarcoma 18 months ago. It has been an absolute rollercoaster. I began a chemo about a month later and early on (I'd say first 6 months of my treatment) I reached multiple points where I thought "I guess this is what death feels like." I had so many negative health experiences one after the other that I kept a running list to review with my oncologist every chemo cycle. Maybe it's my stubbornness but I literally refused to let this be my end - consulted many doctors, dealt with many financial/insurance issues, entertained continual modifications to my meds, put more trust into my care team than I ever have for any doctor (or God for that matter). Now I feel my chemo/meds have really been dialed in to tame the worst side effects and symptoms. And what I've learned is that my experience in this whole journey is not what I expected in the beginning. It's been totally different from the handful of case studies I could find, which were also very different from each other. As time goes on and my scans have shown this "highly agressive" cancer to be pretty stable in my case and changes are made when needed, I now feel I could continue this battle forever. My point is that 18 months later I am I'm a totally different place both physically and mentally. The doom and gloom of the initial diagnosis has worn off by now. I am nobody special and never possesed peak health in my life so literally anybody can beat this damned thing if I'm able to have even the slightest success. Keep on fighting ❤