Health Update

 Last Thursday I met with an University of Michigan oncologist at the recommendation of  the oncologist who had been treating me in the previous hospital.
The reason was that that oncologist felt I was improving enough to have a bone marrow transplant at UofM.
He also admitted that UofM was more familiar with Leukemia that they were.
I wish we had that conversation in July.

I met Dr Bixby and his associate last Thursday as I said earlier.
We had quite a discussion of my case and Scherie was with me.
I asked that for reasons of Training and Quality Assurance I would be recording our conversation and he laughed. I explained that I didn't want to get home and not have a reference for when Scherie and I got home and disagreed on what was said.
It turns out that She was actually listening better than I was. 😂

I took the audio and uploaded it into Word and had a transcription made with a summary.

I then had CoPilot make a summary which I present

Summary: In bold are some very important considerations

This document is a detailed transcript of a medical consultation between a patient, caregivers, and healthcare professionals regarding the diagnosis and treatment plan for acute myeloid leukemia (AML). The conversation covers chemotherapy protocols, treatment phases, potential side effects, monitoring strategies, and patient concerns.

Overview of Treatment Plan for AML

The patient is scheduled to undergo induction chemotherapy known as "7 + 3," which involves two drugs, including daunorubicin (red devil makes you pee red. Glad I was warned!), administered via a PICC line due to the vesicant nature of daunorubicin that can damage tissues if leaked from a regular IV. The induction phase aims to induce remission by targeting active leukemia cells. Following induction, the patient will receive consolidation therapy using cytarabine (also called cytarabine consolidation or IDAC/HIDAC), administered every 12 hours for six doses over three days during inpatient admission. Consolidation therapy aims to deepen remission and improve chances of cure .

The PICC line used for induction will likely be removed upon discharge to reduce infection risk, but it may be reinserted later if needed for frequent blood draws or transfusions during consolidation. Unlike ports, PICC lines are preferred in AML due to ease of removal if infection occurs.

I will insert here from the transcript:

Dr Bixby

So first. No one questions That you have acute myeloid leukemia. Or AML is an abbreviation that I might slip and use.

There are many different subtypes. Of AML and the way that we currently classify. These different subtypes. Is based upon genetic changes. Seen inside of the leukemia cells. Now again, when I use the term genetic, I don't mean things that you inherited. Or could be passed along. These are spontaneous mistakes just inside of the leukemia cells. So during your lifetime and honestly, no one can tell you when, but likely very recently. There have been genetic changes inside of those bone marrow cells. That have caused them to become cancerous. And the pattern. Of those genetic mistakes. Both tell us your subtype. Of AML. And also help us prognostically.

From thousands who have walked your walk. Before you. Walking this walk. So we have genetic information on 10s, if not hundreds of thousands of other. AML patients and we know how their disease responded to therapy. In what their outcomes were, and so we can, I hate to say it this way, but we can take advantage of that information. And there are. 4. Genetic pieces of information that help us understand to the best of our. Ability. Your prognosis? I'm going to define some terms as we go along talking about these genetic changes. So the first thing that we always do when we capture some leukemia cells from a patient is we grow those cells in a Petri dish. Believe it or not. And we extract the chromosomes. Chromosomes as a term is how we package the genetic material inside of our cells.

 And you had three genes that had typos. You had a mutation in a gene called nucleophile zman or NPM. This one. You had a mutation in IDH 2. And you had a mutation in SF. 3B1. So we take that information together with that chromosome results and there are national guidelines. That tell us how to interpret the prognosis based upon the pattern. Of those mutations.

Dr Bixby

Yeah, yeah, yeah. So we use that genetic information and there are national guidelines to tell us how to interpret. The pattern of those genetic test results, and here's where disagreement #1 comes. Between us. And admittedly, the national guidelines. And what you were told at Saint Joe's. So what they put on paper is that you have what they worded as adverse risk. Genetic testing. Meaning a higher risk AML. And when you look at the national guidelines, they would say that you have a favorable risk AML (not the worse Adverse).

Ed Bonderenka

Am I supposed to be happy right now?

Dr Bixby

The main thing is. What is the intent? Of the therapy that we're giving. And what does it take? To meet that intent. In general, we typically always try to approach. AML patients with curative. Intent try to make the disease go away and stay away forever. But what it takes to cure someone with AML, can either be chemotherapy and chemotherapy only. Or a bone marrow transplant for patients with favorable risk.

So VIDAZA and venetoclax (as I was getting) cannot cure AML. And would require a bone marrow transplant. But in patients with favorable risk AML there is a different chemotherapy regimen that you could consider starting. That has the chance to cure the AML without having to go through a bone marrow transplant. Now I'm not here. To say that chemo is easy. But the time commitment is much shorter. With chemo and chemo only. Versus what I understand was some new information about what it takes to undergo a bone marrow transplant. Which is at minimum very intensive year. Off work. And undergoing therapy. So change number one that I have to inform you about is the risk. Of your AML and how maybe VIDAZA and venetoclax might not be the only way to approach this? It may not be the optimal. Especially if you want to avoid a transplant. And #2 your response to that first round of chemotherapy may not have been as much as it was advertised.

I think the main way that I see those divergences happen. The pathologist here. That read bone marrow biopsies. Only. Read bone marrow biopsies. They don't look at lung biopsies, kidney biopsies, liver biopsies.

Ed Bonderenka

Those guys pretty much admitted that. That that was. While bone marrow surgery or, you know, transplants were out of their can, but at some point they pretty much were saying, you know, I'm asking specific questions and they're saying, well, we're oncologists, but, you know, this is a little bit above our pay grade in a sense.

So the biggest challenge right now is time, because right now you're right in the middle of a treatment. And what I'm asking you to consider, I don't often ask. Which is potentially pausing the treatment that you're getting. Because I don't think that it was what I would personally advise my loved ones to get. And start a different treatment.

End of transcripts clips. My summary? I wasted 6 weeks with my prior treatment.

Understanding Remission and Cure

Remission is the short-term goal achieved after induction and consolidation therapy, but cure is defined as maintaining remission for five years. Surveillance is necessary because relapse can occur up to five years post-treatment. Decisions about bone marrow transplant depend on risk factors and response to chemotherapy. The patient currently has a lower-risk, chemotherapy-sensitive subtype with NPM1 mutation, but minimal residual disease (MRD) testing is complex and not perfectly reliable due to subclonal mutation presence. MRD testing may influence transplant decisions but is not definitive at this stage 4 5 .

Number of Consolidation Cycles

The standard consolidation regimen typically includes three to four cycles of high-dose cytarabine, with the exact number tailored to patient age and tolerance. For patients under 60, four cycles are generally recommended to maximize cure chances, while those over 60 may receive three cycles due to less supporting data for a fourth cycle. The decision is individualized based on patient response and side effects 6 7 .

Role of Bone Marrow Transplant

A transplant is considered if relapse occurs or if new high-risk features emerge. Transplant is most effective when performed during remission, not with active disease, because the new immune system requires time to establish and fight leukemia. The patient must be in remission and fit enough for transplant to proceed 8 9 .

Monitoring During Treatment

Bone marrow biopsies are performed at key points: around day 14 of induction to assess response, after blood counts recover, and at the end of consolidation to confirm remission status. Blood counts are closely monitored, as chemotherapy temporarily ablates bone marrow function, leading to low blood counts and increased infection risk. Transfusions of blood products and platelets may be needed daily during nadir periods 10 11 .

Potential Side Effects and Precautions

• Cardiac Monitoring: An echocardiogram is performed before induction to assess heart function due to the cardiotoxic risk of daunorubicin (an anthracycline). Although the risk is low for patients without prior exposure or heart disease, monitoring ensures safety. Further echocardiograms are done only if symptoms arise or before transplant 12 13 .
• Infection Risk: Due to low immune function during marrow aplasia, patients are hospitalized to manage infection risk and receive supportive care 14.
• Kidney Protection: High fluid intake and urine output are maintained during early chemotherapy days to prevent kidney damage from tumor lysis syndrome, with diuretics used only if fluid retention occurs 15 16.
• Hair Loss: Temporary hair loss is expected 17.
• Dietary Restrictions: Patients should avoid raw or undercooked proteins (e.g., rare steak, sushi), unpasteurized dairy products, and poorly washed greens to reduce infection risk. Well-cooked meals and properly washed vegetables are safe 18 19.

Patient Concerns and Clarifications

The patient expressed confusion about treatment phases, PICC line management, and MRD testing. The medical team clarified that induction refers to therapy targeting active leukemia to induce remission, while consolidation is post-remission therapy to deepen response. The PICC line is typically removed after induction to reduce infection risk but may be reinserted if needed. MRD testing for NPM1 mutation is available but may not reliably detect all residual disease due to subclonal mutations 20 21 .

The patient also raised concerns about side effects such as cardiac damage and fluid retention; the team explained the low risk and monitoring protocols. Questions about transplant timing and the number of consolidation cycles were addressed with an emphasis on individualized care based on response and tolerance 22 23 .

Summary of Clinical Process

• Consent will be obtained before starting chemotherapy.
• Echocardiogram results will guide the initiation of daunorubicin.
• Induction chemotherapy (7 + 3) will start promptly once cleared.
• Close monitoring with blood tests, biopsies, and supportive care will continue throughout treatment.
• The treatment team includes physicians and fellows who will provide daily care and answer questions 24 25.

Overall, the consultation provides a comprehensive explanation of the AML treatment plan, addressing patient questions and emphasizing the importance of monitoring, supportive care, and individualized treatment decisions to maximize the chance of remission and cure while minimizing risks 26 27.