Refractory ALL

I’ve just been told I have primary refractory ALL as I have had three unsuccessful induction phases - each more intensive than the previous one. The Dr seemed rather negative about next steps but mentioned Flag Idea. Does anyone have any experience of this and likely outcomes? My last bone marrow biopsy showed 71% blasts. I’m trying really hard to remain positive.

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Hi @JoyLA.
I’m sorry to hear that you have had quite intensive treatments that haven’t done what they should. It must also be difficult when your consultant seems negative - of course it would be hard to stay positive.
I have a different blood cancer but am hoping others can share their experiences with you.
Have you had the opportunity to discuss this with your team or was it just mentioned in passing? x

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@JoyLA I was in complete shock when i was newly diagnosed.
My thoughts and emotions were all over the place
Then add in the doctor being rather negative, that would be my final straw
I also have a different blood cancer, but it is fine to have complete meltdown sometimes and then tomorrow is another day.
Now this is something that I find this so difficult, but try and keep it in the day.
I hope others will be able to help you
Perhaps writing down all your fears, thoughts, feelings and practicalities for talk to your Dr about them and be pleasantly assertive.
Be ever so kind to yourself and look after yourself and please do keep posting.
If you would like to talk to someone the Blood Cancer Support line is there for you on 0808 2080 888.

Having spoken to the Dr today, it seems the plan has changed. Instead of FlagIda they’re now referring me for CAR-T cell therapy. From what I’ve read this sounds quite positive, although getting to the hospital will be more difficult. Now I just have the uncertainty of knowing when I will get the phone call.


Oh @JoyLA I am glad that it sounds more positive news for you, but sorry about the longer journey.
Now the waiting which is horrible.
Look after yourself and please do let us know when you hear something

I’m glad there is a plan but I to hate uncertainty. You take good care of yourself and keep us updated X

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