AML patient on Azacitidine and Venetoclax - cycle 1 of treatment

Hi,

I'm feeling very in the dark with what is happening with my Dad and can't get any answers from his care team as a doctor isn't ever available to speak to given everyone is so busy, and understandably there's only so much information that the nurses are able to give.

So here's the story so far. My Dad, just 82, diagnosed with AML in September, started on Azacitidine and Venetoclax a month ago. Very healthy for his age besides the AML. He was in hospital for the first 11 days to start his chemo off. All was going well at the start sitting up and eating well. He was then discharged to come home and after a week at home was back in hospital struggling to breathe. He must have had an infection as was given antibiotics and transfusions and then moved to Haematology for the past two weeks. He seemed to be getting a little better after a few days but then last week needed a gastroscopy (which we hear hasn't shown up any significant problems) but for the last 6 days he's become more poorly. He was due to start cycle 2 of chemo 3 days ago on Monday but that's been delayed as he's not well enough. He had a bone marrow biopsy so the results of that, which we should get soon will inform the next steps. In the last six days, he's been unable to eat, and seems very confused at times. 

I guess my questions are does this all fall under the umbrella of a possible 'normal' response to the chemo? Or is this the AML fighting harder than the chemo is? I appreciate this is probably an unknown and only the bone marrow biopsy can shed some light. Can patients come back from being this poorly? Does the confusion reduce? If the Azaciidine and Venetoclax needs to be changed are there other possible treatments for someone his age?

This is probably all very difficult to offer us much but if you're able to add anything that help to demystify what's happening, that will help me to understand more I'm sure.

With huge thanks,

Tilly 

  • Hi Tilly and thank you for posting,

    I am sorry to hear about your dad's situation and that he has been very poorly. This must be a difficult situation

    I am afraid not being involved in your dad's care we cannot say what is causing his symptoms and whether or not it is the chemotherapy or the AML that is causing this. I appreciate it has been difficult to get hold of your dad's team, but as they know his situation they are best to advise you.

    It might be that they do not have all the answers at the moment until the results of the bone marrow are known. This will then help them to decide what the next steps should be.

    You have probably spoken to your dad's haematology nurse specialist but it might be worth speaking with them again. You may need to leave a message but they should get back to you.

    I can imagine that this uncertainty is very difficult and I am sorry I cannot be more helpful on this occasion. You may find it more helpful to talk things through with the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    I hope you can get more information soon. Take care,

    Jemma