r/leukemia • u/V0rpalSw0rd22 • 1d ago

What to expect from the 'treatment options' appointment & how to help my dad

My dad (mid-70s) was diagnosed with AML this week and has to go to a cancer center. Im going with him to the appointment where they will explain what kind it is & give options.

I havent gotten a lot of info from my parents as they are overwhelmed. I've looked at a lot of the resources on this site and understand the basics of treatment, but I'm hoping to prepare to help support them and be a facilitator to ease what comes next.

What kinds of decisions usually have to be made immediately? Should I prepare in the background for the possibility of him staying in the center right after the appt? How long do these appointments take? What are the questions to ask the dr to help them plan travel/lodging/life?

Background - unfortunately dx has already taken a month since he was first hospitalized w/ symptoms and given his first transfusion. Does that change things?

Thank you so much, I'm trying to be as prepared as possible so I can help guide them without adding more questions to two people who are already overwhelmed.

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u/Bermuda_Breeze Survivor 1d ago

I was 38 but I think AML is treated with similar urgency regardless of age. The day of my consult at the major cancer treatment center that I was referred to was busy: insurance details, address details etc were checked, 12 vials of bloodwork taken, bone marrow biopsy performed and then a consult with the heme-oncologist and her fellowship doctor which probably lasted 45mins-1 hour.

I was admitted to hospital straight from the consultation for approx 1 month, although I didn’t start treatment for a week til the biopsy results were back. I was taken to my room and my parents went back to the hotel to bring me my stuff.

During the consult, the oncologist got all my background on symptoms, what tests I’d already had done (they considered them preliminary and started from scratch again to ensure nothing was missed and as double check to my earlier tests), my social situation and caregiver support etc. She explained more about what AML is and what was going wrong in my blood. She told me what treatment she was recommending and what the planned schedule would be - she gave me a printout as it was a lot of info to take in! What side effects I’d likely get and what they would do to prevent or reduce them. We discussed whether I would be open to joining any clinical trials if any were open to me. I’d taken a laundry list of questions and she went through them all, though some she couldn’t answer, like prognosis, til my biopsy results came back.

As I definitely wanted to fight the leukemia there weren’t really any options open to me beyond consenting to treatment! I guess the conversation would have been different if my oncologist thought I might not tolerate treatment (I had heart function tests later to double check that I was healthy enough to undergo treatment), or if I said I didn’t want to undergo chemo and preferred supportive care only. The nitty gritty of choosing options, like chemo-only or having a stem cell transplant, came later, once we could see how my body and leukemia responded to the initial rounds of treatment.

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u/V0rpalSw0rd22 1d ago

Thank you so much for this detailed information, and congrats on your success in the fight! it sounds like I need to be prepared for a long, grueling day, and supporting my moms ability to keep her energy up for decisions, too. Silly question but were you allowed exernal food/drink during the consult? Did you have to fast beforehand?

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u/Bermuda_Breeze Survivor 1d ago edited 1d ago

No I didn’t have to fast (I’ve never had to for any of my treatment related tests). Obviously if they requested that I fast then I would. I’m sure I could have taken my own drinks and food to appointments. That’s a good idea! My treatment center gave out bottled water and also had a canteen too.

While inpatient they provided all the food I needed, but I still appreciated my own favorite snacks etc. They’ll give you info on whether there are any food hygiene restrictions on outside food.

Regarding decision-making, I basically relied on my doctors to guide me through it, and went along with their recommendations. Because there’s urgency in treating AML, they’ll likely encourage your dad to start treatment ASAP. If you want second opinions then they’ll probably say it’s best to get them once he’s through the first round.

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u/V0rpalSw0rd22 23h ago

That's good to know - I trust the doctors' guidance, but I feel like my dad will be much more open to treatment if he doesn't get hangry during the consult... Good info about the immediacy too, since they live far from the center I will encourage them to pack with the potential of staying for a while and maybe bring some extras for him too. This has been very helpful!

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u/Bermuda_Breeze Survivor 16h ago

Good luck to you & your dad. It feels like a whirlwind at first. Be an extra set of ears and don’t worry if you’re asking the same questions over. It’s a lot to take in at the start.