Hello
My husband is 67 and has AML (as well as longstanding ankylosing spondylitis). He was diagnosed last November and is currently on Venetoclax and Azacitidine chemotherapy. In remission as of February. But recently chemo has caused zero neutrophils and low platelets and he has had infections. He is currently in hospital having IV antibiotics for latest infection.
I would be really interested to hear from any others on this chemo regimen and how it has affected them!
Mentally for me the problem is that you are permanently worried to a lesser or larger degree. No respite on this really. Not helped by Covid situation so that you cannot meet with doctors and talk things through easily although they do their best over the phone!
Hi JMR4388 and welcome to this corner of the Community and sorry to hear about your husband.
I am Mike Thehighlander and I help out around our blood cancer groups. I was diagnosed way back in 1999 with a rare type of skin Non Hodgkin’s Lymphoma.
recently chemo has caused zero neutrophils and low platelets and he has had infections.
I totally get the challenges this can cause, I have had two Allo (donor) Stem Cell Transplants so low counts and infections have been part of life for a number of years but now over 5 years in remission so things does improve but takes time.
You could put Venetoclax and Azacitidine into the search tool and look at old posts and if you want hit reply and put up a comment and see if the member is still looking in.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Family and friends and Carers only groups as you will connect with others supporting family and friends through their cancer journey.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
((hugs))
Hi JMR4388,
Not sure if you're still checking in here, but my dad was diagnosed with AML almost three weeks ago. He's 69 and has a pre existing condition of Mastocytosis - another rare disease which affects the Mast cells. My dad is on the same targeted therapy combination of Venetoclax and Azacitidine. He came out of hospital and is now living with me. I live on my own and work from home and dad's home just wasn't suitable.
This has all come as such a huge shock but he did really well to get to a place where he could come out of hospital last Friday and he has now completed this first cycle of injections as an outpatient.
We're very much focusing on positive thinking and as an energy therapist we're practising tapping and Law of Attraction as I believe the mind body connection is key to changing things within physiology - obviously working wih the medication.
I completely empathise with your feeling of worry all the time. I am a lot better than I was a fortnight ago, but even the most positive person has negative moments sometimes. I haven't accessed the support on here yet, but intend to if I feel I need it. I'm struggling to get dad to talk to or see anyone other than me and my brother, my sister and my boyfriend. His world has become small and I'm liaison for all the rest of our family and his friends. On top of caring for him and opening up my home to him - it's sometimes overwhelming. Everyone is so supportive though so I'm taking all the help I can get and we're certainly feeling the love and positive vibes.
Hope you're both doing really well x
️
