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Acute Myeloid Leukemia questions about treatment & survival
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (26)Comment receiving replies
I called my ombudsmen every day this week .I have not heard from her in about 5 weeks,about switching this has been going on since the beginning of August.When I called Friday I was told she is not avaible never call back. I feel I am getting the brush off.
The last time she called I was calling back and forth to get my neupogen injection my neutrophil was 0.4
I was able to tell-her live on the phone that I was told the nurse did not know me .
Thursday my doctor office called oncologist wants a pow wow to talk about my concerns. with me spouse children.
I don't think this is fair, I don't think I should have to have a sit down meeting with a doctor I don't want to see any more.
he knows already, he said way back in August, I see you don't want to see me anymore . I feel I am at a unfair advantage . my ombudsmen will not reply to my call to let me know what was decided. I am going in blind not know what was decided or if I can change doctors I am a patient going through treatment suffering the effects. of ALM Leukemia I don't think I should have to be put through this when I called demanding treatment I always told whoever to tell him and his nurse actually what I said.
I feel responsible for my own care, that is the only reason I feel I am alive. today. my oncologist should be responsible that is why he is my doctor
I have already told him I have to call , said he did not know that is probably true as he shows no interest.
At one appointment I brought up that I had an infusion the previous day, he said I didn't know you had a infusion it show he isn't looking at the chart before the appointment.
He is still accepting new patients and gets great reviews, I wonder why he is still taking patients when he has no time for the patients he has.already.
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@sheridan2026
I think sitting down with your doctor and your family for a discussion is a really good idea. It could be very productive in helping to come to a resolution for your treatment. You and your local oncologist are definitely not on the same page. So this needs clarification!
These meetings have a way of becoming a bit heated so try to remain calm, even if you’re seething. Make brief notes of what you expect as a patient and what has been lacking.
You may also want to take a look at, The Patient Revolution from Mayo’s own Dr Victor Montori. https://www.patientrevolution.org/
There are several discussions on the Patient revolution in Connect. Here’s a link to one of them:
https://connect.mayoclinic.org/discussion/anyone-involved-or-interested-in-patientrevolution-org/
More can be found by typing The Patient Revolution in the top search bar.
You have a very good basis for comparison with the successful treatment you received out of state at another facility. Because it’s costly for ongoing treatment to be done out of state, most larger teaching/research clinic, aware of the inconvenience to patients, will then pass the treatment plan and directives to a local provider with the intention that the local doctor would follow suit in order to maintain the successful protocol. Your local doctor has apparently dropped the ball and not eager to be a team player.
For me, I think I’d welcome that sit-down with provider and family so that you may be able to work things out together for an amicable fresh start. If not, you’ll know at this appointment! You have every right to transfer your care to another doctor. And as a patient, you have every right to expect the best available care, similar to what you’ve already experienced elsewhere. Your out of state clinic set the bar pretty high. But that doesn’t mean your local oncologist can’t meet those same expectations.