This will make more sense if you scroll down to the July 11th post and read that with the analogy, and work your way up to this thread. So lets start there, continue here.
We met with the doctor at UCSF yesterday. While the clinical trial meds stabilized and shrunk her existing tumors, unfortunately it didn't prevent new lesions from growing very recently... and quite rapidly. The pain in Madi's chest/ribs is because of them. Based upon a number of factors most importantly a 'washout period' of her system, the trial med has been discontinued. Madi is finding balance treating the pain appropriately and she's close to nailing it... next steps, maintaining it.
We returned to Simi last night and today we met with chordoma specialists in Santa Monica to discuss plan-b. Her new oncology team collaborated and came back with a recommendation: they want Madi to start an IV chemo regime asap. If all involved agree, she'll have a chemo port installed and begin that treatment asap... an infusion one day every three weeks. She won't lose her hair and we're told the side effects are nothing compared to the horrible chemo concoctions she's had in the past. In parallel they recommend starting an immunotherapy med... you can read more about that at this link. That'll be an injection every three weeks, one week before the chemo. There's a promising clinical trial opening up in August, and we understand that to be plan-c.
So that's it in a nutshell, updates to follow as she she earns her frequent flier miles in this 'journey'. Our apologies for posting such an unfavorable update, but it's impossible to call everyone who loves Madi to give them the news.
We proceed forward with unwavering faith and absolute determination to slay this two headed dragon.
Love,
The Joneses
We met with the doctor at UCSF yesterday. While the clinical trial meds stabilized and shrunk her existing tumors, unfortunately it didn't prevent new lesions from growing very recently... and quite rapidly. The pain in Madi's chest/ribs is because of them. Based upon a number of factors most importantly a 'washout period' of her system, the trial med has been discontinued. Madi is finding balance treating the pain appropriately and she's close to nailing it... next steps, maintaining it.
We returned to Simi last night and today we met with chordoma specialists in Santa Monica to discuss plan-b. Her new oncology team collaborated and came back with a recommendation: they want Madi to start an IV chemo regime asap. If all involved agree, she'll have a chemo port installed and begin that treatment asap... an infusion one day every three weeks. She won't lose her hair and we're told the side effects are nothing compared to the horrible chemo concoctions she's had in the past. In parallel they recommend starting an immunotherapy med... you can read more about that at this link. That'll be an injection every three weeks, one week before the chemo. There's a promising clinical trial opening up in August, and we understand that to be plan-c.
So that's it in a nutshell, updates to follow as she she earns her frequent flier miles in this 'journey'. Our apologies for posting such an unfavorable update, but it's impossible to call everyone who loves Madi to give them the news.
We proceed forward with unwavering faith and absolute determination to slay this two headed dragon.
Love,
The Joneses
