Hi all,
I’m in my late 20’s and recently been diagnosed with acute undifferentiated leukemia (AUL) I know that there are information with regards to Acute myeloid leukaemia (AML) & ALL, but unfortunately I can’t find much about AUL apart from the poor prognosis. My doctor has been very good at explaining the diagnosis, however I would find it extremely helpful to hear from somebody going through the same thing. I already had Flag-Ida which has failed & soon, I’ll be going through another chemotherapy (Azacitidine and venetoclax). If this fails, then there will be very limited options. I just wanted to reach to anybody going through the similar diagnosis? How are you getting on? What sort treatments have you had/having?
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Hi @jenilayo
I am sorry to learn of your diagnosis but I am glad you have found this supportive forum.
My daughter was diagnosed with Acute myeloid leukaemia (AML) at 20 years old and I have shared her treatment journey via a thread on this forum. I don’t have any information on AUL but wanted to tag the wonderful @BloodCancerUK-SupportTeam as they offer advice and support 
It sounds like you have already been through a great deal. How are you feeling?
I stopped looking at doom and gloom data and we took each day (sometimes hour) as it came.
Wishing you all the best in your next stage of treatment. Do check in on here when you have time to do so.
Sarah
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Hi @SarahMum i just read the news of your daughter. I am pleased for both you & I hope your daughter is doing well 
I am not doing too bad atm, they’ve restarted my hydrea to bring my white cell count down before my next chemotherapy, but atm I’m dealing with tiredness & fatigue as my haemoglobin is starting to fall back slowly. I’m due for another blood test tomorrow, so I’m hoping they give me a blood transfusion.
I just feel really anxious because since AUL is rare, I just hope my doctor doesn’t give up looking for alternative treatments if this chemotherapy doesn’t work.
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HI @jenilayo I know @SarahMum has given you a brilliant response and I hope others will be able to share their experiences for you.
Perhaps just take things a stage at a time.
When I read your post it showed me that no matter what our diagnosis is we often share similar fears, thoughts, feelings, questions and practicalities.
Your questions are worth talking through with your nurse or consultant
As we are all unique people treatment, or not, dosages can alter and there are different clinical trials as well.
@SarahMum has given you the Blood Cancer UK support services details if you would like to talk to them.
Please do keep services as I look forward to hearing more about you and be ever so kind to yourself.
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Hi @jenilayo and welcome to the forum.
I hope that there are others who are able to share their experiences with you and that you find value in the forum, it really is a great support.
I have also copied in the @BloodCancerUK_Nurses as they may be able to give you more specific information on your diagnosis.
It must be a very challenging time for you.
Remember the support line is there if you need it and there is always someone to listen,
Please take good care of yourself X
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@Erica @SarahMum @Nichola75 Hi all, fortunately I was able to connect with somebody in this forum who had AUL & had some positive results. This has given me more determination to win this long and tough battle 
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Hi @jenilayo please do keep posting on here as I look forward to hearing more about you and really look after yourself
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Hi @SarahMum I read on your forum about the latest news of your daughter. I’m so pleased to hear the good news for both of you! I read how very involved you are with your daughter’s care.
Luckily, I am also very fortunate to have a strong support system, which makes a HUGE difference.
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Heya @jenilayo
Thank you so much. I am really pleased to hear that you have a strong support team too. It makes a big difference
And, guess what? That support system got even bigger with all the wonderful gang on here too.
Take things easy and keep us posted how you are doing.
Sending you positive thoughts
Sarah
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I’m so glad I reached out to this forum. Everybody has been very supportive and encouraging.
Luckily, I was able to recover from Flag-Ida and discharged home to spend Christmas & New Years with my family & my two cats who I missed dearly when I was in hospital. I am still at home at the moment but I am getting regular blood tests and have my key worker, who’s a specialist nurse for extra support. I am currently trying my best to optimise myself physically & mentally for my next treatment. My doctor already started me on Hydrea to lower my white cell count, so I’m trying my best not to get any infections.
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That’s really great news!
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Dear @jenilayo
Thank you for posting and we are so glad you found our forum for both support and information. I am so sorry you have had such a tough time and we do hope that the Venetoclax and Azacitidine is effective.
I can understand why you would want to hear from others in your position as there is not the written/online information around your diagnosis available. I am so glad you have found someone here that you can talk to, it is invaluable to share experiences.
May I ask where you are being treated? Has there been discussions around Stem Cell Transplants at all? I would also suggest talking to our @ClinicalTrialsSupportService as they are a brilliant team of Nurses that can review if there are any trial options available for you if you have not already discussed this with your Treatment team?
We (the Nurses) would also be very happy to support you in anyway we can so do get in touch if this would be helpful?
Take good care
Gemma
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Hi @GemmaBloodCancerUK . Thank you for getting in touch. I’m currently situated in The Midlands. There are talks about stem cells transplant; my sister is currently waiting for result whether she’s my match or not. However, I was informed that they want my leukemia cells to be significantly lower or in remission before I could have the transplant. I haven’t asked for any numbers, but I was told it was lower than before. I’m currently on Hydrea and my recent blood test shows it’s slowing down the production of my white cell count. My doctor said there are no clinical trials available for my case at the moment but I would love to get in touch with @ClinicalTrialsSupportService but I’m not sure how to directly message them? I have been looking at other hospitals around the UK that specialises in cancer treatments too. I am also open to potentially travel across another country for treatment if I was left with no choice. I just don’t want doctors to give up on me and put me on maintenance just because it’s a rare cancer. I am trying to be as healthy as I can get to combat side effects of my treatments.
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Dear @jenilayo
Thank you for the reply. I am pleased to hear that you sister has been tested and the transplant team will also be looking out for Matched Unrelated Options too. As you said, being in the deepest remission possible is key for the transplant to be successful so I am sure the team are keen to start the Venetoclax and Azacitidine.
I have contacted my colleagues in the Clinical Trials service about you. In terms of speaking to them you could fill in this Blood Cancer UK Clinical Trials Support Service referral | Blood Cancer UK and in the meantime I will chat to the nurses too.
Best wishes
Gemma
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Hi @GemmaBloodCancerUK Thank you so much for your help! I have completed the form, so I’m hoping I can touch based with one of the nurses. Luckily, my treatment team has been very good so far at monitor my blood test result. I’m hoping I can start my treatment soon.
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Hi @jenilayo
Wishing you all the very best and if you should need to talk you know where we are.
Take good care
Gemma
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Hi all, just an update.
Doctors want me in tomorrow, definitely Monday (depending on bed availability) to start my new treatment, which is Ven-Aza. I’m hoping they put me in a side room as the ward seemed to be full of flus and chest infections atm. I’m also aiming to pack light & be mentally prepared as best as I can, as I’m determined to fight off all the side effects & have the rest of my treatment at home.
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Hi @jenilayo perhaps do ask for a side room, although obviously there are less side room beds available. Perhaps also make sure that you have a supply of masks with you.
Please do let us know how you get on, I will be thinking of you.
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Be thinking of you tomorrow. Please keep us updated on how you get on
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