Hello dear readers.
I have a favour to ask you.
I was contacted today by a young mother seeking help for her 4 year old son who has ALK MYCN driven neuroblastoma. They have been fighting for almost all of his short life and time is running out. What they need is access to Lorlatinib, whether through trial or off label.
“My son is refractory with rapidly progressing disease which is overtaking him. Last Thursday he walked in park and kicked ball, today he is immobile with his ilium destroyed by disease…We traveled around the world (from UK to Sloan Kettering and to Germany most recently ) to save him but he keeps relapsing. Since his latest progression on last week’s scans we are sent home on palliative care. We are in sheer disbelief and devastation. We love him so much. We literally left no stone unturned. Today, lorlatinib went into phase 1 trial for neuroblastoma, but my son doesn’t fit the study entry criteria, despite being one of not many children who express ALK amd mycn, for which lorlatinib has preclinically shown to be effective even as single agent (this is saying something big). We don’t have the time to wait and see if he would fulfil the entry requirements and his oncologist believes we are doing him no favor by keeping the fight. And so I couldn’t yet convince her to apply for lorlatinib on compassionate use. My son was on ceritinib but progressed thru it, he is refractory to chemo and has to great a disease burden for immunotherapy. All we have left is really the pain meds.”
If you can share this, or if you know of someway to help please contact me.
Time is a commodity not many value until it is taken away.
Then it becomes priceless!