Anyone with AML? If so please let me know anything helpful.

@babshere1 Well, this is a bit of a conundrum for you. I’m sorry you had such a serious reaction to the infusions for AML and of course that would make you very wary of any further treatment. From personal experience, this disease tends to proliferate without treatment. How quickly this happens can depend on the risk level of your diagnosis.

A note about chemotherapy…As we age, our bodies won’t tolerate some of the more aggressive chemotherapy or drugs so reduced intensity types of chemo have been developed for this reason. There are several of these meds in your oncologist’s arsenal.
So there may be other options (chemotherapy) for you to try…but again, they will involve a more long term commitment. I know you’re trying not to get involved with overextended treatments…unfortunately this disease isn’t a once and done. It will take committed treatments most likely long term. From my knowledge there are no homeopathic or alternative treatments for this form of leukemia or I would have been interested.

If you don’t mind sharing a little more with me, did your hematologist oncologist discuss which mutations are associated with your AML? Do you recall the name of the infusions you were receiving?

Hi Lori, I don’t know anything about what type of chemo other than one milder for older patients. I was hospitalized after the hallucinations and other issues but not given any idea of what to do next. They sent me home. I don’t know where to go from here. The oncologist department never contacted me. I’m shocked.

I would have been open to discuss any ongoing treatment. I just wanted to let you know that. Of course that left me on my own along with help from family.

@babshere1. Wow, I’m shocked right along with you! This is highly unusual that there’s been no further contact from your oncologist after you were discharged. I really encourage you to call your oncologist’s office to speak with one of their NPs (Nurse Practitioners) or the doctor.

Don’t be afraid to be the squeaky wheel! Frankly it’s really upsetting that you should even have to do that. I suppose it’s possible that it’s just an oversight. But still… At the very least there should be updated blood work and a consultation ASAP.

If you don’t get a quick response, then it’s super important to contact another hematologist oncologist without delay.
I’m so sorry you’re having this experience. Just getting the diagnosis is tough enough without being left without guidance!
Do you have the possibility of other hematologists?

Hi @babshere1 Just checking in with you to see if you’ve made any progress talking with your oncologist. Have you called their office?

Lori after the infusions and issues I was hospitalized and pretty much out of it. My daughters were there and in recently talking with my oldest daughter I learned that the oncology department had Drs. Come in and not offer any further treatments but very coldly told my daughters said say to take me home and let me eat and do whatever I wanted. A social worker came and my girls had no idea what to do since they were told I needed 24 hr care. 2 of my girls live in Florida I’m in Michigan. They then were told of Hospice house and felt pressured into seeking that out. I was there just 2 days and found out I didn’t belong there even a nurse told me that. I went home after an incident where I knew to go home. I’m home and doing ok but have been talking with my family about getting an appointment with U of M to see if there’s anything more I can do. I’m so sorry I didn’t have much to say about this earlier. I truly had no memory since I was so sick then. I still am shocked and surprised nothing better was offered to try. Thanks for listening.

I have a friend and neighbor who had acute myelomonocytic leukemia - one of tbe most deadly types of AML. He went to MD Anderson. He underwent an allogeneic transplant. Now almost a year later he has 100 percent donor cells and is totally free of leukemia.
Some centers can work miracles. The patient is a male and your same age: 79.

@babshere1 That’s not good! U of M has a great SCT program. Your daughters need to call them immediately! Every day counts when you have AML! Your doctor really dropped the ball. I am sorry!

I had my SCT for AML in 2016 at IU Health in Indianapolis. It was successful and I have recovered well.

@babshere1 I’m honestly at a loss for words…and that doesn’t happen often!! Your medical treatment (or lack of) was disturbing, to say the least!
I just read the reply for you from @alive and echo everything she’s said! Yes, please, please have your daughters or yourself, contact the U of M without delay. Being in a larger teaching/research setting will provide you a deeper bench of specialists whom, I know, will take much better care of you than your past doctor.
Please let me know what you decide to do.

@hsminc .I am 75 with aml and not able to get it a stem cell transplant because of my age...your friend was lucky they let him do it