Hi @Help
I’m sure it’s tough for your Dad and it must be hard for you and your family.
The Aza/Ven combination is very common for Acute myeloid leukaemia ('AML'). I was on for about 11 months and I know others who have been on one or both for over 2 years.
Hope that helps and best wishes to you, your Dad and family
Hi. How is your Dad doing today? My mum got a bed at 8pm last night and treatment started today. She is a bit anxious about being in a room with three others because of infection risk, but hopefully if any beds come up in a two person room then she could change. She is starting treatment today so will let you know how it goes. I know side affects vary from person to person.
Hi Duncan. Apologies, you have probably already told me this but my brain is scrambled. Did you go on to have a transplant after Aza / Ven? That is ideally what I would like for my mum and they said that she is healthy enough for one. They are just not sure it is needed as her only mutation (Double CEPBA) is such a favourable one. The research on being cured with Aza / Ven is very limited though as it is still quite new in the world of cancer so we will make that decision when it comes to it. She has been added to the transplant register anyway.
Great news that your Mum has got a bed and treatment starting @Rosevin4
I’m sure it’s a massive relief.
Still lots of worry I’m sure and hopefully Mum will be well looked after.
When I was first admitted after diagnosis I was on an 8 bed ward.
Positive was that people to chat to who became part of my support team.
With regards to infections they are usually quick to move people into a side room if possible if any indication of infections.
Hi @Rosevin4
So my order of treatment when I got my Myelofibrosis diagnosis which progressed to Acute myeloid leukaemia ('AML') was as follows:
Initially 3 cycles on its own.
After progressed to Acute myeloid leukaemia ('AML') went through intensive chemotherapy with Flag-ida
That didn’t deliver the result they had hoped for so put me on Azacitidine and Venetoclax combination.
It was this that got me to a position where they were willing to offer me a Bone Marrow Transplant.
Here’s a link to Scottish Medicines Consortium (who are the equivalent of NICE in England) paper that lead to approval of that treatment combination in Scotland
As you probably are aware health is devolved to the Scottish Parliament so has different approval process.
Hope that helps 
@Rosevin4 how has today been? I’m pleased your mum has a bed and is starting treatment. Is she staying there for a while? Or having it as an outpatient? Let me know how she goes. How are you feeling?
dad is ‘ok’. The same really. Still having blood and platelets every day. He cried today as they said he couldn’t come home and he thought he might be able to. So it’s very sad. Altho my mum and sister did manage to get him outside in a wheel chair for 20 mins so that is something. Still no word of any further mutations. They will start aza/ven when a bed becomes available on the chemo ward. I’m still unsure if that means he will be in for it for a bit or it’s a daily thing. Terrified of infection atm.
He will have a BM biopsy after the 2nd cycle they said.
Its still all very shocking and terrifying
Hi Duncan, I have just realised how to @ someone! So, thank you for all of your replies and information, it has been helpful and comforting.
Hi lovely. That must have been so hard to see your Dad upset. It is awful when you just want to help but feel so powerless to do so. He is truly in the best place at the moment although it is very hard to see that when you are the one in hospital. Unfortunately this will all become the new ‘normal’ for you all soon, the shock will slowly fade and you will just be able to focus on getting your Dad through this one day at a time.
So for Aza/Ven the first cycle is typically done inpatient, which is what my mum is doing. This is because the first cycle usually hits the body hardest and they need to keep an eye on blood count. They also want to monitor for tumour lysis syndrome which is when the cancer cells break down so quickly that they can damage your organs. This is nothing to worry about as they will keep a close eye on you and they know all the signs and can treat it quickly. You are usually in hospital 1 - 2 weeks and then will be discharged if you are stable and all future cycles (it is done once a month) will be done outpatient. The Aza part is an injection and Ven is tablets. My mum did her first day today, they give you lots of tablets to help ease nausea and stomach discomfort etc.
Getting infections is completely normal when it comes to chemo. That is why you are monitored so closely. Although it is important to be careful and not go in to visit your Dad when you feel ill, most infections actually come from your own body. My husband had loads of infections during his chemo and they would just give him antibiotics and they would clear.
I hope having more information helps a bit!
When I was on the Azacitidine and Venetoclax combination the Azacitidine injections were days 1 to 7 so Monday to Friday, Saturday and Sunday recovery days and then the Monday and Tuesday.
I know others who were just on 5 days of injections and I was later on.
The Venetoclax as you rightly say is every day for the 28 day cycle.
Blood results determine whether next cycle rolls on from last one.
I and others had times when blood numbers not good enough which resulted in a delay to next cycle so don’t worry if that happens as Haematology team will make those decisions.
Hope that helps
Hello, sorry for the delay. Yes, that is very helpful thank you. It’s shocking you have been through this with your husband.
How has your mum been getting on? Are you able to visit her for this part whilst she is in?
My dad is pretty much still the same. I hope he gets to start treatment soon. I feeling fine now so back on hospital duty from tomorrow!
Hope you are ok. Thinking of you and your mum.x
No worries at all! My mum is on day three of the tablet chemo and it will be day 2 of the injection part tomorrow (the chemist can’t prescribe that part on weekends for some reason). She is doing well, her neutrophils and platelets are dipping (her platelets were only in the 20s prior to chemo starting) so she might need an infusion in the coming days.
Hopefully your Dad will start his treatment tomorrow and you will get the last of the mutation results back this week. I am in hospital 9 - 5 tomorrow. Taking my laptop along to do some work whilst keeping mum company. Keep me updated 
@Rosevin4 how is your mum getting on?
my dad was discharged last night but was back in a&e by 2am with a massive nose bleed. He is in so much pain as they’ve had to put a balloon thing up there to stop the bleeding. It’s just so awful to see. He is/was due to start chemo on Monday, but who knows now. I wish I could take the pain and suffering away.
So sorry to hear this. This sounds incredibly stressful for your Dad and for the family. I hope things have improved somewhat today. My mum is on day 4 of the injections and day 6 of the tablets. She has had a few random high temps and some shivering but it tend to disappear quite quickly. They have put her on antibiotics just as a precautionary measure incase of infection.
Hi @Help, I hope you don’t mind my jumping in here.
I’ve been following the thread, and wanted to say that if it would help to have a bit of space to talk to someone - just to say how you’re feeling without having to hold it together - our Support Line is there for exactly that. You can call on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk.
Take care, we will be thinking of you both,
Ceri - Blood Cancer UK Support Services
Thank you 
Hi lovely. Just wanted to check in on you. No worries at all if things are too stressful to reply. Just wanted to let you know I am thinking of you and your family x
@Rosevin4 hi lovely, I have been thinking of you too. How has your mum been?
My dad managed to come home for about 24 hours Thursday but went back in on Friday with cellulitis in hit toe/foot 
. he was quite unwell again. Altho seems to be responding to the antibiotics. But because he has had such a difficult week with the nose bleed and now this he has pressure sores because he’s been so poorly and not been able to get up much or shower. It’s devastating as he is due to start chemo tomorrow and I just don’t know if that will happen now. But I don’t know how he will survive more time without it as he is so poorly. It’s been such a difficult 3 weeks. The a&e trips are so traumatic.
I hope your mum is getting on ok and you are too xx
I am so sorry to hear this. It seems like your Dad can’t catch a break, I really hope they can get him into a place where he can start chemo soon. I bet he will start feeling better once he starts and the chemo starts destroying the cancer. I have read of others who had their chemo delayed due to being in a bad way initially and the treatment still worked for them. Any news on the mutations yet?
My mum is okay, she is home from hospital. She is having her last injection of this cycle as an outpatient today. She is a lot more tired and gets a lot of indigestion/heartburn. She will get her bloods tested today so might need some more transfusions.
@Rosevin4 ah I am pleased she is home! How did she manage being in hospital? Did she have many transfusion or feel unwell? You must be so relieved her treatment has started.
I’m so hopeful my dad will start Thursday. He is now home again. It’s such a worry tho given everything that has happened. I feel really bad for my sister who is staying with my mum and dad atm. I’m a single mum and so help when I can, but she has not worked since this all happened and my dad really is quite poorly and so the physical toll is a lot. I now seem to have another cough so that limits me further in case of him catching it. I might call the helpline tomorrow to see if there is any help for my mum to help care for him.
thinking of you x
Did you get any advice from the helpline? Is your Dad still on track to start chemo tomorrow? Don’t beat yourself up about not being able to do more. It is so difficult when you have children as they always come first and your Dad would understand that. It sounds like you are doing loads of the background research which really helps too.
Yes my mum is relieved to be home! She has to go into hospital Mon, Wed and Fri for blood tests so it is still a lot but better than being in hospital. She hasn’t needed any infusions since being out but as her neutrophils are on the low side she is being kept on antibiotics even though she doesn’t have an active infection. I just hate the uncertainty of all this so much, I am sure you can relate. I am sad that I can’t just fix this for my mum. I feel so helpless and scared about the future.