Just wanted to say hello as well. How are you .
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Hiya,
I’m good thanks for asking Anna and Alfie 
… just trying to work the forum on my phone, does anyone know if it’s available as an app, I can’t seem to find one.
Cheers Phil
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Hi Phil, it isn’t currently available as an app. It should have full functionality when viewed as a webpage on your phone, if that’s not the case please let us know.
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Hi there Phil. Really good to hear your story. I was 36 when I was diagnosed and it was a total shock, I had some mouth ulcers and a chesty cold at the time. I felt run down and I had lost weight and had night sweats due to a temperature but nothing that I thought was serious. I was 36 and was in the process from separating from my husband. My daughter was 3 and I just thought I was stressed. I am in the intermediate risk group of which I have met no one else I this group - they have said my genetic mutation is uncommon (trisomy of chromosome 1) and so basically don’t know what the risk is of it coming back but I had Flag ida chemo and didn’t need a BM transplant. They Haven’t been able to locate any MRD so hoping to have molecular test for this. Anyway you are not alone x
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Sorry meant to say my platelets and white blood cell count hasn’t fully recovered yet and I wondered if anyone else has had this? I had my last cycle of chemo in January. They are just a bit low
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Hello
I too had AML, which is currently in remission, I was diagnosed in 2015 and finished treatment in the September. I was 39 with an 8 year old daughter.
When did you finish treatment? It does take a long long time to recover, I am at 4 years now and still not where I was before diagnosis.
Its always good to hear from someone else with AML. I haven’t had a transplant either… yet!
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Hello
I hope you don’t mind me jumping in…
I have the same AML and after 3 chemo cycles I am still MRD positive.
My sister was flown over from Australia to be my stem cell donor but at the very last minute I developed antibodies which make us incompatible… I was told it is unlikely that an alternative donor will be found due to my rare tissue type…
I am devastated that I have a donor I can’t use it is like a cruel joke…
It is encouraging to hear that you are still in remission.
All the best
Corrina
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Oh, Corrina, to have your sister flown over from Australia and then you developed antibodies certainly feels like a cruel joke, please keep letting is know how you are and how you are feeling, we are all here to support you. Don’t forget that the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day as well. Take care
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Gosh that must have been so disappointing I Can’t begin to imagine. I will keep everything crossed for you. Whilst I haven’t needed a stem cell transplant, I have got an identical twin sister and I was devasted to learn that she would not be a suitable donar as identical twins are too similar!! There was me thinking I had a spare body for parts!! Any other type of organ donar and she would be perfect…just not stem cell! Cross fingers I never need one.
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Hi Corrina, I can’t imagine how frustrated you will be feeling, what a shock and a disappointment for you. Are they still looking for a donor for you? As Erica has mentioned, our support services are here if you’d like to talk to someone about what’s going on and how you’re feeling. Please do reach out if we can do anything or be a form of support at all.
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Hello Corrina,
Sorry I haven’t replied sooner. It must be really hard to deal with for you regarding your transplant. I have heard that this happens and sometimes women who have been pregnant can’t be donors because of their antibodies.
Have they said they will look for another donor or are they monitoring you to see if you stay in remission? Do you know which mutation you had or anything about your cytogenetics?
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Hi… thanks for your messages I am not good at navigating the forum…
They won’t find me another donor as I have a ‘rare tissue combination’ so it is a double smack In the face!
I have been having bad panic attacks and feeling such despair…
However! I am on a new drug called Venetoclax and they want to keep me on it for up to a year or as long as it works…
They don’t have much data on it for AML so I am feeling tossed between a pioneer and terrified…
Are there people on here who were not able to have a transplant but still alive??
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Hi Corrina, you have answered part of my question to you in another post. Let’s hope you hear from others who have been through a similar situation. I am not surprised that you have been having panic attacks, feeling such despair and oscillating between being a pioneer and feeling terrified because I think blood cancer is such an isolating condition especially when I am at home alone with my thoughts and feelings. Do you have and support from any people and organisations? Although sometimes I have found it is only people on this site that really understand my fears, thoughts and feelings. Take care and we are all here to support you.
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