Seeking guidance on choosing hospital for advanced leukemia

[Anonymous]

The OP posted a year ago and just came back to update us. They're not going to Hopkins.

[Anonymous]

OP back with an update. Mom is back at Inova FFX likely dealing with a systemic relapse. MRI shows diffuse infiltration in marrow. On-call oncologist has ordered a lumbar puncture and we will meet with her regular oncologist tomorrow.

Mom does not want more treatment as last round of maintenance was very difficult.

She was diagnosed 20 months ago and we were told her Philadelphia like B-cell ALL had poor prognosis.

Feeling grateful for time we’ve had and we will figure out next steps per her wishes.

Cancer sucks 😔

[Anonymous]

Really MD Anderson is the best. But living around here, I would 100% do John Hopkins.

[Anonymous]

Anonymous wrote:Really MD Anderson is the best. But living around here, I would 100% do John Hopkins.

Oops. Didn’t realize old post. Sorry for what you’re dealing with!

[Anonymous]

Please talk to your mom. I'd go with closest. My sister died of this disease. It is so hard and the treatment is brutal. Your mom likely needs treatment immediately.

[Anonymous]

Op sorry didn't realize this was old. I feel for you. I've been in your shoes. Cancer sucks

[Anonymous]

Hugs to you OP - it sounds like your mother has been able to manage her care the way she wanted to. I am sorry you and your family are going through this.

[Anonymous]

Anonymous wrote:I would say for first line treatment, community hospital is fine and convenience is key as she’ll likely need inpatient chemo. If she fails first line or relapses then you can consider Hopkins / Dana Farber etc. I’d also look at the Florida Mayo Clinic in Jacksonville, they’re very strong in hematology. Best of luck and start talking about how hard you want to push on treatment NOW.

This is the exact opposite of the right advice.

Your first treatment is very important. I used to work at Sloan Kettering. They had the best shot if they were the first place you went.

Too often, people came to them when they were too advanced/terminal. MSK could have salvaged them if they got the first shot at them, but the local hospital had botched that opportunity.

I am NOT saying that this is the situation with OP's mom, but others should keep it in mind in terms of when to go where.