Acute Myeloid Leukemia questions about treatment & survival

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.

@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.

@sheridan2026 what were your platelets....are they always low

The platelets often drop to 6 after chemo. I have started chemo with a low 23/26. I know they are going to drop starting that low.The last 2 infusions were tiny bags, even the nurse said she never saw such small bags which means my platelets don't go as high go as high as if you gave a full bag.
That is no one fault the platelets can only come from one donor you get what you get.
I have gone weeks without a platelets infusion my doctor would let them drop to 16 before an-infusion so letting them drop that low took more infusions to bring them back to at least 20. When I returned from out of state my platelets were 79
For the last 10 years I always had low platelets around 100 back then I was told by hematologist I had leukemia, I got a second opinion from my oncologist, he said I didn't. I went for blood work every years for the last 10 years
That is my background story.
My oncologist asked in what I though was an astonished way if I wanted to keep getting infusions. I said yes I am not in pain I am very happy to be alive.. This is the same oncologist who wanted me to go to hospice care Jan 9 2026. Since the end of July/beginning of August I wanted to switch oncologists , it is hard to believe you cannot make a switch, My oncologist knows I want another doctor so the relationship is strained. My ombudsmen is avoiding my calls I am not giving . I feel in my condition life should not be so hard instead of taking care of myself I have to deal with the politics of doctors who won't let go for one reason or another.

I am so sorry you are going through such a hard time trying to get care from your doctor.. hopefully you can get it worked out and communication gets better. Stay positive and continue seeking good medical care.

Hello friends!
It is just unbelievable and unacceptable that a blood doctor will refuse to provide treatment to patient with blood cancer !
Friend ! CALL YOUR INSURANCE COMPANY OR MEDICARE ASAP !! Explain the situation!! They pay the doctor!!
This SOB ! Has no right to manipulate you !! You are fighting for your life!
Have family MEMBERS FILE A COMPLAINT !!
OBUNDSMEN IS NOT A PAID POSITION!! WHAT HOSPITAL DOES YHIS GUY WORK OUT OF ?? If YOU GO TO SEE THIS GUY ! FRIEND OR SOMEONE MUST GO WITH YOU !!
HAVE THEM RECORD VISIT ! Keep CELL IN POCKET
DIRECTLY ASK WHY HE WILL NOT LET YOU GO TO ANOTHER DOCTOR??
Please !! BRING FAMILY OR FRIEND WITH YOU
THIS GUY IS INTIMIDATING YOU BECAUSE YOU ARE OLD AND VERY ILL !!
Only my OPINION BUT ! I would NOT TRUST HIM !!
There is NOTHING TO RESOLVE ! His treatment of you ! SPEAKS FOR ITSELF
MY GUESS HE IS TICKED OFF BECAUSE YOU WENT OUT OF STATE TO GET BETTER TREATMENT!! DESTURBIBG ENOUGH ! There are ARROGANT DOCTORS!
FRIEND ! You are AT A POINT IN LIFE WHere YOU SHOULD NOT BE AFRAID TO TELL THE TRUTH!! YOU HAVE NOTHING TO LOSE !HE DOES ! I AM SO SORRY FOR WHAT YOU ARE GOING THROUGH With THE DOCTOR!
I HOPE YOU HAVE SOMEONE WHO WILL STAND THERE WITH YOU ! I believe THAT OUR PATIENCE ON THIS SITE WILL SUPPORT YOU EMOTIONALLY! Our LIVES ARE SHORT BECAUSE OF THESE RARE BLOOD CANCERS ! Having TO BATTLE A DOCTOR WHO IS SUPPOSED TO GIVE YOU BEST MEDICAL CARE !! IT IS A DISGRACE!! Come ON FRIENDS ! Let’s GIVE OUR FRIEND ENCOURAGEMENT
I WILL LOOK FOR AN UPDATE
HANYA