Time to rethink cancer trials. 🧬 Precision oncology demands: -Early molecular profiling -Flexible evidence (Phase 1/2, real-world) -Tumor-agnostic approvals - Global equity New era, new rules. Nature Cancer OncoAlert Vivek Subbiah, MD G Curigliano MD PhD Razelle Kurzrock, MD ASCO ESMO - Eur. Oncology ECOG-ACRIN Cancer Research Group

After the surgery was complete, they came out and said they couldn’t remove the humerus cancer fully either. They said that it invaded the bone marrow. I slept with my head on his bed and cried all night. How could this have happened?

I found out the next day that the other 2 surgeons hadn’t been asked to do Owen’s surgery until April 2nd when I insisted the mychart message be forwarded to them. They all lied to me

.President Donald J. Trump reads out the "alarming findings" of the MAHA Commission Report on childhood health: - More than 40% of American children have at least one chronic health condition. - Since the 1970s, rates of childhood cancer have soared by nearly 50%. - In the 1960s, less than 5% of

strong agree. focusing only on minimizing (perceived) clinical risk by betting on targets already successfully drugged by many others ignores both economic risk of irrelevance, slows the sector's innovation for patients, and under capitalizes potential breakthroughs

instagram.com/reel/DKCufClt_… Jay Bhattacharya, MD, PhD Secretary Kennedy President Donald J. Trump First Lady Melania Trump Karoline Leavitt Melinda French Gates Gates Foundation

They tried to deflect and say that it likely was already grown that advanced when we found it, but the CT scans/MRIs should be able to see if it was already grown into subclavian artery, nothing was said to me about that before his surgery. Wish I could read the images myself

He was playing his PlayStation the next day. He looked so good and had minimal disease burden, so after I collected myself I was still hopeful. We just had to get him on something to stop this from spreading

Other than too large of a dose of Ativan, his surgery was uneventfully and he did great. They had to move his port to the other side because of the proximity to his clavicle tumor, so that was pretty sore for the next few weeks.

He was off chemo for another 10 days, making it about 6 weeks since he had chemo last. Next step was ifosfamide.. that’s always next for relapsed osteosarcoma even though it doesn’t work

We did the first round of ifosfamide in Milwaukee. It was a 7 day stay and academic hospitals are a nightmare for patients. So many different people in and out, asking him to put on chapstick and do the mouthwash, never checking the bags and then coming back in 10 min

His brothers came to visit once, but it was so hard on them to have to leave us there. We missed so much of their lives while Owen was fighting for his.

Back home and with his brothers, he decided that he didn’t want to bother with has walker anymore and was trying to gain independence back. The strongest boy I’ve ever known

Our whole family and our community came together to throw Owen and our family a benefit. He had so much fun being the center of attention, and being around all of our family. He was even interviewed for the news. Owen was always happiest surrounded by family

His next round of ifosfamide was supposed to be outpatient. We got insurance to allow him to wear a chemo backpack. We went to Milwaukee to get his port accessed and hooked up and went home. When we got home, something was leaking. Back to Milwaukee we went

Scientists know the system is broken. They just can’t say it—because their funding depends on pretending it’s fine.

My sweet boy died because he couldn’t breathe. His CT scan didn’t show progression of disease. His bronchoscopy didn’t show infection. But he was denied steroids while he deteriorated. I suspect he had pneumonitis from his new chemo regimen.

I miss my boy 💔

Over the next few months I sent hundreds of emails to pediatric oncologists. No one wants to think outside the box. From MSK to MD Anderson and everywhere in between

After MAP is ifos/etop, then gemcitabine/docetaxel or cabozantinib. They are all likely to be ineffective but drs won’t veer from them. This is a note from MSK, after I asked if they would help my son. He had minimal disease but was incurable to them; they wouldn’t even try