Hi everyone,
I’m just wondering if anyone else has been diagnosed with AUL. I know its a rare form of acute leukaemia and there isnt much information out there as the info leaflets for Acute Leukaemia normally only refer to Acute myeloid leukaemia (AML) or ALL and that’s the same with the treatment regimes as they are all either an Acute myeloid leukaemia (AML) or ALL approach. My consultant has been great trying to explain it to me. I was diagnosed in September 2023 and I’m now on my third type of treatment (first FLAG-ida, then Blinatumomab, now Azacitidine and venetoclax) since the first two treatments didnt really work. It would be good to see if anyone else has AUL or is on the same type of journey as me, im in my late 30s.
Thanks,
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Hi @Melonmc9 I am so glad that you have foud our forum, welcome.
I will copy the Blood Cancer UK nurses @BloodCancerUK_Nurses to see if the can help you.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I have found quite often it doesn’t matter what blood cancers we have as many of us share similar fears, questions, emotions, thoughts, medical issues, physical issues and practicalities
I am so glad that your consultant is great explaining things to you. Unfortunately medical speak is like another language to me.
I look forward to hearing more about you, really look after yourself and please do keep posting
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Dear @Melonmc9
Thank you for posting and welcome to the forum. I do hope that you find this a supportive and safe space.
It is good to hear that your Consultant has been explaining your diagnosis to you, as you mention it is a very rare diagnosis, and the information that we and others have really only applies to the treatment options for Acute myeloid leukaemia (AML) and ALL. However, we do hold information around Living well with blood cancer | Blood Cancer UK which may be useful. Do you have a Clinical Nurse Specialist that you can also get support from around your diagnosis and treatment?
May I ask how you are feeling on your Azacitidine treatment?
As @Erica said, there may be others on the forum that may not have the same diagnosis but can certainly relate to the treatments and experiences you have.
If you would like to talk further we are here: Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
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Thanks for responding.
I’m not finding the Azacitidine treatment too bad. Only real side effects are the sites of the injections and dry skin. My bloods have started to dip a bit on this cycle which is my 2nd, but not too much, but I’ve been told I’m odd because my bloods have been mostly fine with the exception of when i had Flag-ida. My last bone marrow had 50% blasts and thats the least I’ve had since I was diagnosed. It’s more emotional this cycle as I’m very aware that if this doesn’t work then chances of beating this reduce more.
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Dear @Melonmc9
The injections sites can be painful, have the hospital suggested anything to soothe this for you? It is no wonder you feel emotional about the treatment and you have also been through so much already. Have the Haematology team said when they will check your bone marrow again? Azacitidine is a treatment that acts a little differently to other chemotherapies and antibody treatments and it has a gradual effect on the disease. I do hope that it is successful for you.
If you would like to talk please do call and take good care.
Gemma
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Hello!
Welcome to this forum. I’m not entirely sure this will be of any help as we are not navigating AUL but my husband is 32 and currently going through Acute myeloid leukaemia (AML) , diagnosed in October so I can imagine some of what you are going through.
Our treatment has been 7+3 induction for Acute myeloid leukaemia (AML) followed by 2 FLAG-IDA. The first FLAG did work to get us into remission as 7+3 did not work. We then had a bridging chemo in Feb for transplant which was meant to be March and is now June. In the meantime, he is also on the aciditizine and venetoclax which we’re hoping will help maintain remission but also target a genetic mutation which is still present at a molecular level despite remission.
My husband had two mutations, one of which went in the first cycle and one which is still present per above. It can be mentally exhausting to navigate.
I totally empathise and understand your concerns, and whilst I don’t have an answer for you, I wanted to tell you that you are not alone. Keep going and hang in there. Do you have a good support network for you? How have you been feeling?
Will be thinking of you.
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Hi,
Thank you for sharing your story. How are you coping with your husband? I worry about mine as he’s being strong for me and doing more around the house as well as working full time. I know its hard on him too.
I’ve got alot of friends and family and very lucky to have them in my life but we moved to be closer to his family so dont see them as much as I would like.
As you would have found, it’s harder the longer it goes one when you can’t see the light at end of the tunnel and it’s easy to get overwhelmed
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Hi Gemma,
Thanks for reaffirming that the Aza takes a while to get into your system.
I’ve got cool packs for the injection sites to help my skin and been putting on aqueous cream, last time it peeled like bad sun burn so putting more cream on this time!
Ive been told my next bone marrow biopsy will be once my bloods recover so haven’t got one booked in yet. I’m usually a planner and the uncertainty and not being able to plan anything is hard.
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Yes @Melonmc9 I am a planner too and since my diagnosis I have found there is a lot of waiting on others and not knowing. I am not a ‘patient patient’
Yes, it is hard on our partners too. I also find it hard to ask for and accept help, I was always the practical, reliable one and others found it hard to see a more vulnerable side of me.
Look after yourselves
Hello again @Melonmc9
The uncertainty is so challenging and it is no wonder that you are finding it difficult to plan. Are you taking the Azacitidine only is there a tablet treatment as well?
For the painful injection sites - aloe vera gel can be useful but that is just a tip, if the cool packs and aqueous are working the great.
Do please get in touch if you would like to talk at any point and take care.
Gemma
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Hi @Melonmc9.
My dad was diagnosed with AUL about a month ago. Like you I have been struggling to find any specific information about it which has been very frustrating and scary as noone seems to know what to expect.
My dad is considerably older than you though at 74 yo; it must be so difficult going through this in your 30s.
My dad is currently undergoing his first cycle of chemo with Azacitidine & Venetoclax also. Unfortunately he is currently very unwell with pneumonia; I understand that this is a common occurance with chemotherapy though, especially with elderly people.
I wish you all the best x
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Hi,
Thank you fo sharing.
I don’t think it’s easy whatever age you are an chemo and its affects can be hard.
Hopefully they can find the best treatment for your dad!
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Thanks for this tip, our nurses have also told us to apply evening primrose oil capsules onto the site and that has helped with the swelling and bruising. Thought I’d post incase it’s helpful to anyone else.
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Hello @SyrenStar,
Thank you for posting on the Forum.
I’m sorry to read about your Dad. You are right, there is sadly very little information on AUL.
Do you mind me asking if he is recovering from pneumonia? I do hope he is starting to feel better and coping with the chemotherapy.
Take care. Best wishes to you both. Heidi.
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Hi @Melonmc, I’ve recently been diagnosed with AUL. I’ve noticed that you’ve made this post in March. How are you doing?
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Welcome @jenilayo and I am so glad that you have found us and been reading around on here. It also takes courage to post.
I hope @Melonmc9 responds to you.
I also find that it often does not seem to matter what diagnosis we have it is the similarities of thoughts, feelings and practicalities that bonds us.
My diagnosis was a complete shock and it took me a long while to get used to.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Look after yourself and be very kind to yourself and I look forward to hearing more about you.
Hi @jenilayo
I’m doing ok. The Ven Aza treatment got me down to about 5% after 4 cycles, i had a stem cell transplant in August and now I have no Leukaemia in my bone marrow!
I’m still recovering from my transplant but it’s looking positive. It’s a long road!
If you have any questions I’m happy to share my experience.
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Hi @Melonmc9 im so pleased to hear that from you! I really hope you make a full recovery very soon! I will be going through my first cycle of Ven Aza fairly soon. My doctor said there’s less than 50% or maybe less than 30% it will work. Did you show a considerable positive result from your first cycle?
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Great to hear from you again @Melonmc9, gosh you have had a lot going on.
Yes, it is a long old winding road but give yourself time and slow and steady wins the race.
Please do keep letting us know how you are doing and feeling.
Be very kind to yourself.
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Hi @Melonmc9
I’m so glad to hear that your initial chemo worked and that stem cell transplant went ok. I wish you all the best in your future recovery and will be thinking of you.
The Venetoclax and Azacitidine treatment did get my dad into remission in Summer last year and a stem cell transplant was scheduled for December. However, unfortunately my dad’s AUL returned in October (known as refactory leukaemia).
A specific treatment for refactory Acute myeloid leukaemia (AML)/AUL with a FLT3 mutation called Gilteritinib was then tried, but unfortunately it had no effect.
I attended a meeting with my dad’s consultants on Tuesday this week. They informed me that no more treatments were available and that they would be withdrawing other active treatments (antibiotics, antifungals, transfusions etc.)
My dad is now receiving palliative care at home with arrangements being made for him to move to a hospice soon.
Sorry for sharing all this but I am finding it very hard to deal with and can’t sleep thinking about it all. I was thinking about all the sources I looked for help at the beginning of this journey and ended up back here. At age 74 (75 now) my dad’s prognosis was poor from the start but the possibility of a stem cell transplant did offer some hope.
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