Seeking guidance on choosing hospital for advanced leukemia

[Anonymous]

Anonymous wrote: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.

+1 on the cosmic rewind button. My mom died of a completely different cancer, but if we knew then what we know now, we would have done next to nothing and only for comfort. We wasted some of her “healthier” remaining time pursing treatment that ultimately changed nothing or bought her a few weeks or a month but she wasn’t well. We never got to travel with her or just relax and be with her. In hindsight it is a big regret and I feel like the doctors just didn’t want to tell us it was a folly to try. Even in the end, it wasn’t the doctors but the social worker and hospice worker who gave the kind and caring hard news. I’m still mad at the docs 4 year later if not giving the balance on the options. They just assume you want to treat aggressively and don’t give the other side.

Hugs OP.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

+1 on the cosmic rewind button. My mom died of a completely different cancer, but if we knew then what we know now, we would have done next to nothing and only for comfort. We wasted some of her “healthier” remaining time pursing treatment that ultimately changed nothing or bought her a few weeks or a month but she wasn’t well. We never got to travel with her or just relax and be with her. In hindsight it is a big regret and I feel like the doctors just didn’t want to tell us it was a folly to try. Even in the end, it wasn’t the doctors but the social worker and hospice worker who gave the kind and caring hard news. I’m still mad at the docs 4 year later if not giving the balance on the options. They just assume you want to treat aggressively and don’t give the other side.

Hugs OP.

Uhhh, where is the imaginary line that the doctors are supposed to draw for some patients and not others??? Not everyone responds to the same treatments in the same way. Some actually do have near-miraculous recoveries. So, how would you have known that wasn’t going to be your family member, and how were the doctors supposed to look in the future and know?

[Anonymous]

Anonymous wrote: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.

I echo this. Hopkins is amazing, but I agree that it depends on whether she could handle travel or would be more comfortable with a local option. I would recommend consulting with Hopkins and seeing how much care could be handled locally. (My mom was in a similar situation and local was the ONLY option she would consider.) Lots of prayers!

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

+1 on the cosmic rewind button. My mom died of a completely different cancer, but if we knew then what we know now, we would have done next to nothing and only for comfort. We wasted some of her “healthier” remaining time pursing treatment that ultimately changed nothing or bought her a few weeks or a month but she wasn’t well. We never got to travel with her or just relax and be with her. In hindsight it is a big regret and I feel like the doctors just didn’t want to tell us it was a folly to try. Even in the end, it wasn’t the doctors but the social worker and hospice worker who gave the kind and caring hard news. I’m still mad at the docs 4 year later if not giving the balance on the options. They just assume you want to treat aggressively and don’t give the other side.

Hugs OP.

Uhhh, where is the imaginary line that the doctors are supposed to draw for some patients and not others??? Not everyone responds to the same treatments in the same way. Some actually do have near-miraculous recoveries. So, how would you have known that wasn’t going to be your family member, and how were the doctors supposed to look in the future and know?

They sugar coated everything and would not really give a prognosis only a diagnosis. Her case was always terminal but they definitely lead us all strongly to believe that the treatment would buy her significant time. Instead we likely traded 3 months of decent quality time with her for 6 months of grueling treatment and no QOL that ultimately changed nothing. It was NEVER presented to us that the treatment might not work and her life would suck every minute until she died.

[Anonymous]

OP here.

First let me say thank you all for your support and recommendations. And for those who have been on this journey my heart is with you and your families.

We have reached out to Inova Schar (FFX) and Georgetown for consults - we know she needs to start chemo asap and will likely be hospitalized for a few weeks for the initial round.

We are discussing options with her and will continue to do as we go through consultations.

We fear pushing too hard only to lose her quickly and lose precious time with her.

We also want to do all we can do if possible - it’s a difficult calculus and a decision we don’t take lightly.

That spurred me to reach out - we don’t know what we don’t know or what to expect.

I have noted every recommendation and cancer center to research and discuss with her and our family.

Truly appreciate all the kind words and guidance.

[Anonymous]

Anonymous wrote:OP here.

First let me say thank you all for your support and recommendations. And for those who have been on this journey my heart is with you and your families.

We have reached out to Inova Schar (FFX) and Georgetown for consults - we know she needs to start chemo asap and will likely be hospitalized for a few weeks for the initial round.

We are discussing options with her and will continue to do as we go through consultations.

We fear pushing too hard only to lose her quickly and lose precious time with her.

We also want to do all we can do if possible - it’s a difficult calculus and a decision we don’t take lightly.

That spurred me to reach out - we don’t know what we don’t know or what to expect.

If Nih didn’t take her then try GW or Cornell Weill in Ny for a consult. New treatments exist but only in certain places right now, that a regular hemo- oncologist is not implementing yet. Things are changing rapidly in this field.

I have noted every recommendation and cancer center to research and discuss with her and our family.

Truly appreciate all the kind words and guidance.

[Anonymous]

Try researching new monoclonal therapy instead if right away starting with chemo. People at GW would know about this

[Anonymous]

Honestly I would try to avoid travel as much as you can. You don't want to spend hours and hours traveling back and forth to Baltimore or even further away for treatment when in most cases the treatment would be exactly the same no matter what large hospital your mom went to. There are a number of world class cancer centers right here in DC. Stay close to home.

[Anonymous]

Anonymous wrote:Try researching new monoclonal therapy instead if right away starting with chemo. People at GW would know about this

Google American cancer society ALL monoclonal antibodies

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

+1 on the cosmic rewind button. My mom died of a completely different cancer, but if we knew then what we know now, we would have done next to nothing and only for comfort. We wasted some of her “healthier” remaining time pursing treatment that ultimately changed nothing or bought her a few weeks or a month but she wasn’t well. We never got to travel with her or just relax and be with her. In hindsight it is a big regret and I feel like the doctors just didn’t want to tell us it was a folly to try. Even in the end, it wasn’t the doctors but the social worker and hospice worker who gave the kind and caring hard news. I’m still mad at the docs 4 year later if not giving the balance on the options. They just assume you want to treat aggressively and don’t give the other side.

Hugs OP.

OP i'm so sorry. And I would really take what these pps say seriously. I used to be a social worker in a hospital and the drs absolutely will wait til the last moment to tell you how dire it is. The social workers and hospice workers being more aware is incredibly true. I often had to push the physicians I work with to think about quality of life and be honest with their patients. They are programmed to TREAT even if it isn't in the best interest of the patient. And as a patient, we assume the drs would tell us if this isn't a good idea and the ending will be the same either way, but instead the drs assume you want aggressive treatment so basically everyone misses one another. And no one wins.

Now I know nothing about your mom's case so it could be worth a fight! but it's good to go in knowing you may need to pointedly ask the hard questions of the drs. Do NOT assume they will tell you how dire it is. Questions - If it was your mom would you pursue treatment at this point? What is the likelihood this will only prolong her life a short while but cause a lot of horrible side effects? Should we be considering palliative care and hospice? Please be honest with me. And ask these types of questions of multiple drs. Even then it will be hard for them. Sorry but they just generally suck at it! They shouldn't but they often do.

Two books that talk a lot about these pervasive issues in the medical system are Being Mortal and When Breath Becomes Air.

[Anonymous]

Ask your oncologist about the recent study in New England Journal of medicine about ALL. See if she is a philadephia gene carrier. PP’s who automatically think these diseases are instant death sentences are operating on outmoded treatments. It may be or it may not be. Stop telling people that she needs hospice instead of treatment. You could be completely wrong. These medicines are not the same as chemo, either.

[Anonymous]

For those who have consulted top ranked cancer centers, have they advised different courses of treatment than local hospitals or done any better? We tried this route and had a bad experience with an arrogant doctor at a famous hospital who advised the same treatment as the local guys.

[Anonymous]

Anonymous wrote:For those who have consulted top ranked cancer centers, have they advised different courses of treatment than local hospitals or done any better? We tried this route and had a bad experience with an arrogant doctor at a famous hospital who advised the same treatment as the local guys.

You HAVE to go to one of the centers that are up to date NOW , not last year or two years ago. Not all arrogant doctors know what the F they are talking about, and are operating on protocols that were known 10 years ago. You have to do a LOT of online research yourself to find the specific places that would use the new drugs NOW. Some of these studies/drugs are brand new, and they work, but some doctors are unwilling to try because it is not what they are familiar with.

[Anonymous]

OP back with an update

We finally got in touch with Schar on Wednesday morning. Within a couple hours they called back and asked us to immediately go to ER.

My mom’s blood work is very abnormal and she needed transfusions and is now scheduled to start chemo on Monday.

We do have a diagnosis now and I’ve reached out to other cancer centers for a consult while we wait to begin treatment.

Thank you all again for all the information and best wishes.