Hello - I’m writing as today we found out that FLA IDA has not been successful enough to put my 17 year old son into remission for Acute myeloid leukaemia (AML) with FLT3. We were aiming for a stem cell transplant and I expected if it hadn’t fully worked he would have another course of FLA. instead the consultant is putting him on a targeted cancer drug called gilteritnib. I’m feeling confused as there isn’t a lot of information online about success of this. Does anyone have experience? I’m wondering if now the stem cell is not going to happen. We had assumed it was a given that they would get him into remission and he would have the stem cell.
4 Likes
Dear @CatherineofHove,
Welcome to our forum although I am so sorry for the reasons you are here. This must be such an overwhelming time for you, please know we are all here to support you.
I think a lot of these questions are best directed at your son’s treating team, are you able to talk this through with the consultant or clinical nurse specialist? It would be good for you to fully understand why they are making this switch and what the next steps will be. Targeted treatments can often be used when remission isnt achieved with the first line treatments. I have taken this information from our website:
Gilteritinib is called a targeted therapy drug because it can target the cancer cells specifically (it attacks cells with the FLT3 mutation but has much less effect on healthy cells). You take it as tablets.
Our webpage does go on to explain that gilteritinib can be used to control Acute myeloid leukaemia (AML) but also to try and obtain remission for stem cell transplant to go ahead.
I would encourage you to talk to the team about this so you have a better understanding of what the plan going forward will be.
I am sure you will get some great support on here from our community.
Once again I am so sorry you are going through this, if you wanted to talk things through in more detail you are welcome to call us on 0808 2080 888.
Take care,
Heidi (Support Services Nurse)
2 Likes
Oh @CatherineofHove I am so glad that you have found us and that @Heidi-J-BloodCancerUK has given you such a brilliant response.
It must be so difficult for you as a mother of a 17 yrs old boy, you must have so many thoughts and feelings whizzing around inside of you, plus your obvious maternal feelings on top and the tricky age of your son not being a child or adult.
Having read your post a couple of times I think what I have learnt over the 21 yrs since my diagnosis with another blood cancer is to write down all my fears, questions and practicalities, and be pleasantly assertive, and ask everything I want to know of medical people. I ask for responses in a plain language as well.
Expectations and assumptions just keep my mind whizzing around and I usually come to the wrong conclusions.
I have no idea about your personal relationship with your son and so much depends on that.
I hope others can share their experiences for you.
However the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do keep posting on here as I look forward to hearing more about you both.
Please do look after yourself as well as you obviously look after your son.
2 Likes
My husband got diagnosed at 32 in October 2023 with Acute myeloid leukaemia (AML) with FLT3 and another unfavourable mutation. He did not go into remission in first round and whilst flag Ida got him into remission, he still was MRD positive. That was December 2023.
He went onto have FLAG no IDa. Cytarabine, then aza and ven x 2 and transplant. He had a transplant in June 24. He is doing really well.
I posted on here on a thread so please do read it if that might help you. We had a lot of ups and downs!
3 Likes
Ps he also had a targeted drug called midostaurin but we have an Acute myeloid leukaemia (AML) friend who has been on gilterinib for a while as their flt mutation didn’t go. It got them to transplant. She had hers in April and is doing great and MRD negative xxx
2 Likes
Thank you so much for posting. It is really helpful to hear about your husbands and friends experiences. And I’m so glad they were positive. My son had midostaurin but it isn’t clear what that did, but just to know that others have been in this situation and fit to stem cell is wonderful. I feel we need to hear the stories of hope to stop our minds just going crazy. I think I’ve been good at not doing that until now but we had believed so much in the previous course that to hear it hadn’t either felt like the end of the world. Thanks again.
4 Likes
Dear Erica - and Heidi - thanks for both your posts. You are of course right about the list of questions for the medical team. Which is something I’ve been good at. I have a book! But on a Friday night when you have only had a brief call and no one is available your mind goes wild it’s hard! I do feel today a bit more together. And you have made me make sure that we have it all written down. The thing that is so good is that me and myg son have the most amazing relationship. I think I only perhaps realised how good it was having spent 2 months in a bed next to him on the teenage cancer ward and every day together. But I’m so glad I’ve posted here. It’s a lonely thing. And there are things i wouldn’t want to say to my husband and certainly not my son for fear of upsetting them. Thank you - I’ll keep everyone updated. We go back to hospital tomorrow and will see his consultant.
4 Likes
It’s terribly hard and I want you to know I felt all those feelings… sometimes in the same moment or the same day. Hope, despair, sadness, excitement, triumph… you name it.
Hope is all we can hold onto, and I searched continually for good news. There are lots of posters on here who are years out and doing great, same for Facebook and Reddit.
My husband and I both found hope and as much positivity as possible valuable in helping to keep our morales up, make the days better and help in his recovery. We spent last Christmas with me driving him back to hospital that night with neutropenic sepsis and we didn’t know if he was going to make it to remission. We’ve not been to hospital since November and he’s all clear. We’re getting into the swing of regular biopsies and life post transplant.
Be kind to yourselves, you’re doing wonderfully as I am sure your son is too. Make sure to fill up your own cup and please do keep talking whether it is on here or in real life. It helps immeasurably in so many ways.
We have a friend who had Acute myeloid leukaemia (AML) just over ten years ago who has fully recovered and living his best life. It was him that connected us to my husbands doctors here in the UK but also gave us something tangible to hold onto. He had Acute myeloid leukaemia (AML) when the treatment options weren’t so good and he never got to know about his mutations nor about MRD neg or positive. Whilst these are a blessing, sometimes I found them really painful to experience too.
Anyway, I’ve rambled but you’re doing marvellously. Just keep going one day at a time.
My husband was treated partially privately via work insurance and partially under nhs but same consultant. He was a steady ship for us during the last year and was very good at keeping us calm and thinking of differing treatment options. The two rounds of aza / ven did wonders for my husband prior to transplant. Xx
2 Likes
Thank you thank you thank you. I just read your post out loud to my husband who is struggling. You are right that we now know so much, which is a double edged sword at times, but we have these incredible advances to be very grateful for. I lost my dad to cancer when I was 30 and I thought nothing could be worse but this is the unthinkable. However your posts have given me another piece of strength. Xx
4 Likes
You are so welcome. I have just noticed your son’ age. @SarahMum daughter had Acute myeloid leukaemia (AML) prior to my husband and her daughter is closer in age to your son, and potentially same mutation ~ she also has a thread on here that was of great hope.
Make sure he and you and your husband have someone to talk to. We found Maggies and MacMillan were wonderful in helping us both in different ways. Also my husbands nurses were a godsend in boosting morale and just lending a listening ear.
I forgot to also say that at one point during our journey, my husbands transplant was delayed from March to June and I had the same worries as you but we made it with patience and more chemo.
Unfortunately, you’re in a different world now where you all are experiencing something that most people will not be able to even comprehend.
I found it helpful as much as possible to be grateful although there were times that it was too difficult to do that. Having a bad day? How could I make it better? A walk with a friend, a cup of tea? Keeping routine going always. I think I also felt so aware that sadly some people with Acute myeloid leukaemia (AML) catch it so late that treatment isn’t an option. I felt thankful that he had a chance to get better. There were some days that felt so difficult but the little things did become a big thing… taking a lap around the ward with him to keep his body moving, a few days at home.
It helped my husband, the kids and I to keep routine. My husband reflects now that it helped him to know that I was taking the kids to school, or going for a coffee with a friend, or going for a walk. Hopefully you can both find snippets of time together or individually where you can do something to keep going. I know my husbands parents found it a horrendous experience to watch their son go through this. His mum found solace in regular visits and in doing his washing etc which also helped me. His dad also liked to visit and would sometimes just sit quietly with him or watch TV.
I hope the above is helpful and not overwhelming. This forum is a wonderful resource and group of people who can usually speak to most experiences in some shape or form.
5 Likes
Hi there @CatherineofHove
Sorry to hear about your son. I am pleased that you have found this forum. It is a safe and supportive space with some very special people who contribute. The @BloodCancerUK-SupportTeam are a wonderful bunch as are the regular contributors 
As @Toadmum has highlighted I have a (rather long!) thread under Caring and Supporting a Loved one.
My daughter was diagnosed with Acute myeloid leukaemia (AML) (at 20
years old) and has the FLT3 mutation. We were on course for stem cell but she went into remission. Her team were super honest at that point and shared that they weren’t expecting that and didn’t really know what to do (!). They consulted a Acute myeloid leukaemia (AML) expert (who heads up the MRD (Minimal Residual Disease) team at Guys. I can empathise with how you must be feeling as parents right now. It truly is a rollercoaster huh?
So, where are we know…? Well, Danae was put on to Midostaurin for 12 months (tablet therapy). She was monitored with monthly bloods and bone marrow biopsies every 3 months. The biopsies all go to Guy’s for MRD testing. All have so far come back MRD negative. She finished her year of Midostaurin in November and her next biopsy is due in January. She will continue to have the biopsy checks for another year.
I am super thankful to be where we are today but I think we both have a deeper realisation that tomorrow is not promised to anyone. My daughter has returned to uni to complete her final year and is also travelling and undertaking new experiences every day.
In all of this I have also realised that no cancer journey is the same. It is good that you are writing down questions to ask to your son’s team. I also support @Toadmum ’s signposting to MacMillan. I received free counselling support which was a lifeline for me. I come back to where I started to repeat what a wonderful support this forum is and all who contribute on here.
Do keep us posted when you can. Look after yourselves in all of this. If we can support in anyway just say. 
Sending love and positivity
Sarah xx
4 Likes
Thank you @SarahMum - I’m really glad that your daughter’s path has led her to completing uni and travelling. I find the thought of my son not being able to fulfil his potential very hard.
@Toadmum thanks for the advice too on how to cope. We have had 3 months of this so far and I’ve been off work all that time (which I’m back of mind is also a worry). And we have another son who is taking his GCSE’s.
@SarahMum so did your daughter not go into remission with Flag Ida? Why didn’t they do the stem cell? I thought that with FLT3 they always wanted to go to stem cell. My son has 5% blasts from biopsy flow test post fla Ida but when they use morphology test it is 20%. We spoke to the consultant last night and they were very surprised that it hadn’t done more. And that’s why they don’t think it’s worthwhile continuing with chemo. Which feels unnerving. I’m going to ask further questions of the difference between the biopsy tests as they are quite far apart, but I also don’t want anyone to think I’m questioning the consultants expertise.
He starts the Gilteritnib today so fingers crossed we will see good results - like his counts continuing to recover.
3 Likes
Do you know whether they’d try the combination of aza / venetoclax to see if that targets the other remainder in a different way? This was effective for my husband in targeting the residual cells. He had two months worth ahead of the chemotherapy for transplant but I know it is used as a longer term treatment for older patients. Our consultant explained that it could target the cells in a different way to the harder hitting chemo. We did have a difficult conversation at the time which was that he would take my husband to transplant with the % he had but the prognosis wasn’t as good. Happily, this did work well for him.
Gilterinib alone got one of our fellow patients back into remission in advance of the transplant. I understand post transplant she moved onto sorafenib to keep the mutation in check.
I don’t know which hospital you are at but you can always ask for a second opinion either at the same hospital or from one of the larger hospitals. Before we went with our consultant, he happily had a look at my husbands file & verified treatment approach.
2 Likes
Hi @CatherineofHove @Toadmum and @SarahMum I think your experiences show so well that there is no one size fits all in treatments these days and a lot more is taken into account than just numbers.
Lots of love to you and yours xx
1 Like
Heya @CatherineofHove
I can completely empathise with your emotions and feelings about the future. I try not look too far ahead now - harder said than done on some days but we need to be kind to ourselves and things change so quickly in cancer treatment.
I think stem cell transplant is the usual option for this mutation. It still remains an option for my daughter. There are very few individuals who achieve MRD remission (her consultant stated that Danae is the second one in this country) so the experts felt it would not be appropriate at that stage and the constant monitoring keeps a check on things.
Of note, but this was not a consideration in the above decision making is my daughter is mixed heritage and there were no 10/10 matches for her in the world. Her team were considering the cord transplant option but things changed.
As @Erica has highlighted, every cancer story is different. It is good to learn from others experiences but each cancer/treatment plan will be individual.
I hope all goes well with Gilteritnib. Can I ask how your son is feeling generally? Remember, he is young and a lot of Acute myeloid leukaemia (AML) data/stats is around older people as it tends to be more prevalent in an older age range.
I am sending you all a big virtual hug 
. Keep asking questions of his team and posting on here when you have time.
Sending love and positivity
2 Likes
Hi - we came home yesterday after a strange new year in hospital. He seems to be coping well with the gilteritnib. Having been used to very intense chemo, daily blood tests and hospital stays it now feels quite odd to be home. Of course I’m really grateful, but anxious about his blood counts - they will next be taken Monday, and of course whether the drug works.
@SarahMum it’s so good that your daughter achieved complete remission with no MRD. It must have been so worrying with the lack of donors. I know how lucky we felt when we discovered my other son was a perfect match for Frankie, and we had ethnicity on our side. Although the doctors are now talking about not being able to use him as we may be going to stem cell without being in remission so Apparantly it’s better to use cord blood then.
I’m going to try and focus on how we make this time at home as good as possible. I’m staying off work so can dedicate all my time to him.
4 Likes
Oh @CatherineofHove it does sound a strange new year for you all.
How have your work been?
I hope they have been understanding.
If not you might like to speak to the Blood Cancer UK support line to talk through options on 0808 2080 888 as your son is 17 yrs old.
How are you coping, you are obviously so caring for your son?
I hope you look after yourself as well as you do your son.
Be kind to yourselves and your other son.
2 Likes
Hi - I am very lucky as my work have been very understanding to date. So long may that last. I think if I had to try and work even a small
Amount it would be too much for me but being able to concentrate on the most important thing (and our other son) is helping me.
We also are very close and are happy to spend lots of time together, which is a blessing as we have had to.
4 Likes
Popping by to wish you a very healthy and hopefully happy new year. Lovely to hear your son is at home! I totally get your feelings about it feeling strange after an extended stay in hospital.
Hope you get lots of chance to relax at home together. Prioritise what is important to you all and say no to anything that doesn’t match that!
Sending lots of love. Make sure you are finding a few moments to take care of yourself, even if sporadic.
3 Likes