Hi I am Terry and Karen, my wife was diagnosed with Acute myeloid leukaemia (AML) in March 2023. She had 4 rounds of Chemotherapy and was n hospital until September 2023 when she was declared to be in full remission with no risidual disease. She had Acute myeloid leukaemia (AML) with FLT3 mutation. She then embarked on 12 months of Midostaurin and 3 monthly bone marrow biopsies (we worked out that since diagnosis she has had 14 of these!). She is still MRD clear. We are now concerned about what happens after September when we understand all support stops, no blood tests and no more Bone Marrow Biopsies. Whilst not being a fan of the biopsies 
our constant has told us on several occasions that if the disease was to return it would show up in a bone marrow biopsy before it does in a blood test. Just wondering if any forum members have been through this phase and have any decided to seek private biopsies.
Hi @Tezza I am so glad that you have found us, welcome.
I hope someone will be able to share their experiences for you and I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
I am not a medical person at all, just someone with another blood cancer.
I am on ‘active monitoring’ or ‘watch and wait’ and I copy the Bloods Cancer UK details on it Active monitoring (watch and wait) | Blood Cancer UK
I don’t know, but I wonder if this is the regime your wife might move onto after September.
Many of us, no matter what blood cancer we have, are on this regime.
Mind you I have found it better, and I know it is not easy, but to just take it a day or stage at a time.
Everyone is a unique being with their own medical history.
Also medical people work in different ways, I have never had a Bone Marrow Biopsy in 21 yrs, others with my diagnosis have.
Obviously you could pay for private biopsies, but do you need to?
I do not know the answer.
Perhaps you might consider asking for a second opinion in September, but that is a long way away.
You have both got plenty of time to write your fears, questions and practicalities as you need them.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do keep posting how you are both going on and really look after yourselves.
Just popping by to say hi. My husband was diagnosed in October 2023 with Acute myeloid leukaemia (AML) also with FLT3. He did go to transplant so I don’t know if that changes things but I believe his blood monitoring and biopsies will continue for a while although I appreciate we are a little behind you.
I think the main thing to do is to voice your concern to the care team but based on personal acquaintances and feedback on forums / Facebook and Reddit, people will continue with periodic blood testing at the very least.
Perhaps she could continue with regular blood tests to help her health / mental health at her GP or similar if not at the hospital… anyway, definitely ask the care team what the ongoing plan for support looks like!
Hello there @Tezza
Thanks so much for posting and it is fantastic to hear that Karen is a continued remission after her intensive chemotherapy and Midostaurin maintenance.
It is understandable why you ask questions around follow up for Karen after such a significant amount of time with both blood count and Bone Marrow MRD assessments. Even though, in particular bone marrows, are not pleasant they do reassure you.
The 2 year time period of Bone Marrow testing for MRD is a standard time frame as the first 2 years post treatment poses the highest risk of any disease reoccurrence, this is something has been tested in Clinical Trials.
How often people are seen in clinic after the 2 years of monitoring can depend on the Hospital so it is very much worth having these discussions with the Haematology Consultant and Clinical Nurse Specialist. It may be good to write down some questions so that you can relay your concerns about assessments, late effects and escalation after treatment. I would expect that there would be a clear End Of Treatment Plan where Karen would know how to escalate any concerns and that her GP would be aware of any long terms effects to look out for.
If it would be useful to talk this through please don’t hesitate to get in touch.
Kind regards
Gemma
Life after treatment - finding a new normal | Blood Cancer UK
Thank you very much for your clear and encouraging response. It is good to know that there should be an end of treatment plan and this is something that we will raise with our clinical nurse specialist. We are over joyed that the bone marrow is still clear but looking towards the future. We will be in touch if Karen or I want further clarification.