Hi everyone,
Just wondering if anyone has any experience of FLAG-IDA? This will now be my 3rd line treatment and a bit nervous as my team has told me this will hopefully be the last hammer blow to hopefully get me to transplant.
I mainly wanted to know what I’m sure everyone asks first, how long anyone had to spend in hospital and if they needed quite a lot of blood products and what the side effects were like?
Any help greatly appreciated!
Hi @nbk112 good questions I hope someone else can help.
I am not surprised that you are feeling nervous of the unknown, that is so natural.
Please look after yourself and be kind to yourself and keep posting
Gosh - that’s a really big deal isn’t it and I can understand why you are nervous. I hope somebody on here can answer some of your questions. If not, might be worth giving the support line a call 
I had Flag-ida for Acute Myeloid Leukaemia after my first lot of treatment didn’t work in 2016. Luckily it did kick me into remission - I spent about 5 weeks in hospital. Yes - lots of blood products needed as wiped them all out. From memory, side effects were nausea and tiredness and a sore mouth. I also developed a weird rash on my arm which was sorted out. Obviously everybody is different but wanted to offer some hope. Very best of health to you. Stay strong x
Thank you for your reply, and congrats on your remission!
This sounds pretty similar to what my team has told me, just a little nervous for it I guess!! Right now they don’t know when they can give it to me as I am still testing positive for coronavirus after 49 days 
but hopefully soon!
Take care!
Oh @nbk112 still testing positive for Covid after 49 days must seem such a long time for you, look after yourself and please keep telling us how you are.
49 days. That has to be a record?!?! How are you feeling?
Dear @nbk112, I hope that you are well? From my experience patients spend at least 4-5 weeks in hospital during their FLAG-Ida treatment. As I am not sure what treatment you have previously received I will give you the most commonly experienced side effects which is most likely what you have experienced before during previous chemotherapy regimens. Generally 3 weeks of neutropenia so very likely to have high temperatures, regular blood products, nausea, painful mouth, loose bowel motions and decreased appetite. Of course, there are medications and management that can help with all these side effects. Not every one has nausea or the sore mouth but best to be prepared. It is very important for you to report any side effects, keep well hydrated, eat little and often, keep active and rest when you can. Listen to your body as it is usually right up and do as much as you can when you have the energy. Keep in contact with family/friends (and forum if you would like) and use distractions like podcasts, reading and audiobooks to pass the time.
I hope this has helped and I am sure your Nurse Specialist can advise/support you further. Wishing all the very best with your treatment and do get in touch if you need: Blood cancer information and support by phone and email | Blood Cancer UK. Take care Gemma
Apparently the record is 138 days!!! So I am definitely not looking to break a record! My nurse rang yesterday to say I am not classed as weak positive so hopefully I’ll be negative soon 
never thought I would be so excited for chemo!! I didn’t realize how fatigued I was untill my energy levels returned to precovid levels over the weekend, so I’m really happy so it’s bittersweet to give it up when I get my chemo 
but all for a good cause I suppose!
Thanks for your reply. That all sounds pretty similar to what I’ve been told usually my neutropenia lasts about 2 weeks the takes about a week to come up but I’ve been told recovery takes longer after FLAG-IDA so 3 weeks sounds about right. I’ll be kept in hospital untill my neuts are up so hopefully no infections
Hi @nbk112 I also never realise how poorly I felt till I start to feel better.
I really do hope you test Covid negative soon and I am waiting in anticipation, be kind to yourself
We will keep our fingers crossed for the smoothest treatment possible, no records please. Take good care Gemma
Hi samsym,
Hope you are ok, just wanted to see if I could ask of you had any infections or were given gcsf?
Sorry if these are too personal but I started gcsf a week after finishing chemo and was hoping for neutrophils this week but have been walloped by an infection, feel free not to answer though if too personal!!