Seeking guidance on choosing hospital for advanced leukemia
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Anonymous
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My 72 yo mother has just been diagnosed with acute lymphoblastic leukemia, quite advanced.
This all came to light after a hospitalization due to severe anemia. Now that we have a diagnosis, the hospital oncologist has recommended seeking treatment via a large teaching hospital (Hopkins or Georgetown). She’ll need induction chemo asap. We live in FFX and he also advised we could consider Inova Fairfax as it’s much closer and will be less stressful for transporting my mother to/from hospitalizations and appointments. This has all happened quite rapidly and we are learning on the fly. Does anyone have any guidance or insights to share? Good or bad for either the larger hospitals like GU or Hopkins vs Inova FFX? Any and all feedback is truly appreciated. |
Anonymous
| OP - I’m so sorry. I had a coworker that pursued treatment at Duke and continued her care at inova. |
Anonymous
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https://www.hopkinsmedicine.org/kimmel_cancer_center/cancers_we_treat/leukemia_program/
Look at the Sidney Kimmel Comprehensive Cancer Center at Sibley, which is part of Hopkins. The drive from Nova was not bad. |
Anonymous
| I would do Sibley/Hopkins or Georgetown. You want to be at an NCI cancer center https://www.cancer.gov/research/infrastructure/cancer-centers/find |
Anonymous
| No. Join study at NiH. Much more advanced in this area. |
Anonymous
We have already consulted NIH and they can’t treat her - they recommended Hopkins, which is their normal referral. Thank you all though for the feedback. |
Anonymous
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Whatever you choose, OP, please do it quickly. I don't want to scare you, but I have had several relatives/friends experience this disease with wildly varying outcomes. The sooner you treat, the better your mom's odds.
Much love and best wishes to you all. |
Anonymous
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Can you consult with Hopkins but get treatment closer to home?
The Schar Cancer Center at Inova is a massive new center on Gallows Rd on the other side of the road from the main hospital. It has labs, imaging, doctors' offices, treatment etc in one place. |
Anonymous
Look at the protocol for her illness at NiH trials, and ask your oncologist to follow one of those |
Anonymous
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You may not be ready for this question, but has she decided yet how aggressive she wants to be? A friend went through something similar with her mom last year. The local hospital was fine for what her mom was willing to try. Hopkins would have been the place if she had wanted to go all out.
Hugs. |
Anonymous
| I’m sorry about your mom’s news. I agree with the PP; please consider talking with her and her docs sooner vs. later about prognosis and quality of life. A 70+ family member died of another type of blood cancer late last year; toward the end, I think the aggressive chemo hastened her end instead of making things better. She was in the hospital for four months and never left. If I had a cosmic rewind button, I would have encouraged her to talk to some of the wonderful hospice people much, much earlier. |
Anonymous
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You should choose a designated cancer center (it is an NCI designation). They have to have a certain level of resources and expertise. The way your mother’s treatment starts is important (more so than later stages). They will also be up on recent advances. Find a list and pick the closest one.
Perhaps at another stage of her treatment (like follow-up), you can choose a local provider. |
Anonymous
| First your mother needs to have a frank talk with her doctors about how aggressive she wants her treatment to be. |
Anonymous
| Dana Farber or Sloan Kettering on the east coast for leukemia |
Anonymous
This I was going to suggest Sloan Kettering - go see them, and you can still go to a closer hospital for treatment. But have them follow Mom. All the best to you and Mom. |