I am currently in remission from Acute Myeloid Leukaemia (diagnosed and treated in 2015, NPM1 mutation) so I’ve created this thread to link up with other AML patients. If anyone wants to ask anything, share anything or purely ‘chat’ please do as I’d love to hear from others
Hello @Lisa I saw that you posted in the introduction page that you were diagnosed with AML. Please feel free to share your experience with others here.
Hi Anna I have just finished my final consolidation cycle for aml (inv.16). No transplant required as classed as low risk. I’m struggling to cope already with the fear of it coming back as have read it can return for that type too. Does the worry ease as time goes on as at moment it’s all I can think about.
Hello @Ks70 ,
I too haven’t had a transplant and have been in remission for three years now. The transplants are very hard on the body and can leave patients will long term issues so they are only ever carried out it a patient is likely to relapse or if their leukaemia doesn’t respond to chemotherapy.
Having said this I fully appreciate the fear of relapse and in low risk cases it can relapse. I know how it feels to live with this every day so how you are feeling is completely normal. Being a lower risk patient doesn’t mean you worry less. It does ease and you think about it less but at this point (three years on) I do still worry. But when I am having one of the moments or days that’s when I turn to friends, family, this forum, other blood cancer friends I have made and this forum. Once I’ve had a chat through my feelings I usually feel more positive. There are a couple of AML friends who are now over 10 years in remission and they tell me that the worry does lessen and one even said she goes to her hospital appointments on her own as shes got so used to it! It is really early days for you and I remember how I felt then so its ok to be struggling, you are no alone
I do keep myself busy which sometimes gets too much but it has been one of my ways of coping. I run a blog butterflyinremission.com , work with Bloodwise, do some fundraising and have hobbies. For me being proactive, doing something positive with my experience has really helped me cope too.
Do you have any support around you? Is there anything else you’d like to ask? I hope this has helped
Hi, I have CLL but really relate to the fear and worry you describe. It took me a long, long while to come down from the high alert of living with a time bomb, to the alert and for me to start thinking about and doing other things. Hang in there I now think it is a natural body response to be on high alert for a long time, don’t forget the shock you have gone through of your world being turned upside down. I have found the support on this community forum is that it does not matter your exact details are it is the fears, thoughts and feeling we all seem to share, please keep posting.
Thank you for sharing your experience and I am delighted to hear that you have finished your final consolidation cycle for AML. That is such a huge achievement especially, since you do not need a transplant and are considered low risk. How are you feeling about everything now?
Pardon my ignorance but I have just been diagnosed with Acute Myeloid Leukaemia. Can it be cured? Thank you.
Oh @JOHNNYA07san I will leave your query to @BloodCancerUK to respond.
It is a question for your treatment team.
I know mine, which is a different blood cancer cannot, but it can be treated.
Look after yourself
I"m really sorry you’ve had an Acute Myeloid Leukaemia diagnosis - what devastating news. How are you feeling, physically and mentally? And I hope you have plenty of support? Have you been told yet how the consultants would like to procede with your treatment? I hope so.
I was diagnosed with Acute Myeloid Leukaemia in Aug 2020. My consultants said to me that they don’t like to talk about cures, because no doctor can say with 100% certainty that any cancer will never come back. However, after an Acute Myeloid Leukaemia patient is 5 years in remission from Acute Myeloid Leukaemia, the hospital can usually stop monitoring them (there are exceptions), and they consider this situation as close to a cure as is possible. However, like most cancers, some types of Acute Myeloid Leukaemia are more treatable than others, and there are lots of other factors too that will affect outcome, like a person’s overall general health.
I hope you’re able to have a chat with your consultants about this soon. Part of their role is to answer important questions like this.
All the very best.
So sorry you’re going through this @JOHNNYA07san - please do give our support line a call on 0808 2080 888 if you want to talk things through.
Our webpage here explains how the most important decision about your treatment is whether you have intensive treatment or non-intensive treatment. Intensive treatment involves strong chemotherapy drugs (which kill leukaemia cells), sometimes given with targeted therapy drugs (which interfere with the way leukaemia cells grow). The aim of intensive treatment is to cure Acute Myeloid Leukaemia. This approach is split into two parts called remission induction therapy and consolidation therapy.
Non-intensive treatment usually involves gentler chemotherapy. The aim of non-intensive treatment is not to cure the patient but to give them the best quality of life for as long as possible.
In case it’s useful, we have information on our website here around the different factors taken into account when deciding on treatment for Acute Myeloid Leukaemia -
Acute myeloid leukaemia (AML) treatment | Blood Cancer UK
Please do let us know if there is any info that might be useful for you at this time and going forwards - we’d be happy to help in any way we can.
Hi Johnny, it is a complicated question you ask ! Full response is best left to the medical professionals ! My answer, having been through the Acute Myeloid Leukaemia journey, is YES ! Nothing is certain, but the medics are very clever these days. Some people are offered a Transplant to replace their own Bone Marrow - other people are not - I presume this decision is based on the severity of the condition and whether the patient can take the strong treatment. Good luck with everything ! Keep posting.
Thank you very for your information on assessment of treatment. I am probably getting a prognosis tomorrow and more info on my treatment. I am trying to be positive for the future and would just like a reasonable type of lifestyle to what is left. I am grateful for all the support that I have received on this forum. Keep going folks .
Best of luck with that tomorrow, @JOHNNYA07san. It’s always hard to hear the cold facts of your illness, even when there’s some positive news amongst it all. I think most people tend to hear the worst bits before eventually processing the good. So if you can, bring someone with you or jot a few notes, and don’t be afraid to ask for clarification or more detail - that’s what the consultants are there for.
We’ll be thinking of you, and hope to hear how you are in the future.
All the best.
Wishing you all the very best for today, do let us know how it goes and how you are but only if you feel up to it and also please don’t hesitate to give us a call on the support line if you want to talk things through before or after your appointment.
Yes, as @Fullofbeans says @JOHNNYA07san when I get my full blood test results a very small percentage are out of kilter, but my mind focuses on those few in vivid red ones and worries about those instead of celebrating the ones majority with range.
Daft, but I am human.
Please let us know how you get on, look after yourself
Thank you every one for your support. I hate to put a negative post on here but I have been told that I " have months to live, rather than years" and that I should get my affairs in order. I have never really got to the stage were I had a settled plan of treatment, it has all been trying to find the right balance. During this process I started on 15 mg of Jakavi tablets a short time ago which of course upped my need for blood transfusions of which I have had 6 up to now which were spread over 2 seperate days a few weeks apart, Amazingly I got most of my appetite back and have ate continiously and hungrily for the last 2 days . I cannot stop. Prior to that I hardly ate for a month and was proscribed as dangerously anaemic which comes as no surprise as I would have thought that not eating would make you anaemic (plus the Jakavi). I feel that my blood nurse was shocked to see that I looked better when I turn up for the last transfusions and she asked me if I had any palputations , sweats or itching and I told her no. My blood tests seem to have thrown everyone. I have got to say that I feel a bit scared but also really positive because I feel so much better and I am eating for fun. I am determined to live a bit longer and if anything I feel that I have the attitude to keep going. My blood doctor also looked confused at my prognosis with a student present. I understand that everyone is different and things can change from day to day but I remain positive. I do feel that maybe they left my transfusions a bit far apart after going on Jakavi. I have another blood test this week with a telephone consultation and another transfusion depending on the result. This time I hope that I only need one.
Keep going everyone and the BOL. Keep positive.xx
Oh @JOHNNYA07san, I’m so sorry to hear this - although I am impressed by your positive attitude, and I’m so glad
you’re now feeling significantly better. Feeling well helps so much with dealing with difficult situations and with your emotions.
It’s great that you’re really hungry - that is always a good sign. And fantastic the transfusions are working so quickly for you. I always felt better really quickly after them too.
I’m a great believer in how one’s positivity can take you further as well. If you feel well, and you’re eating lots, and you’re enjoying yourself, then keep believing and assuming that that is how things will go on. Enjoy yourself. And eat as many delicious things as you like!
And if it is something you might like to do, keep in touch with us here. There’s always support or humour to be had on the forum, or you could ring the helpline if you have questions. You may want to think about your support needs in the months ahead, and to discuss them.
However you choose to spend your time, you have friends thinking of you here.
With warmest wishes to you, and a big virtual hug. X
Dear @JOHNNYA07san, I am so sorry to read your post and am in awe of your positivity. Please do report all your syntoms to the team looking after you so that they can be managed effectively. Do you have a Clinical Nurse Specialist you can call upon to discuss your issues with? We are also here for you if you want to talk How to contact Blood Cancer UK | Blood Cancer UK. Do take good care and thinking of you, Gemma
Hi @JOHNNYA07san nobody should ever be concerned about putting what you felt was a negative post on here.
This is a safe place where you can tell us exactly what is going on for you.
I cannot imagine how you felt when you heard those words.
Have you got support from family and friend?
What you do have is your forum family here and the Blood Cancer UK support line.
I think it is so important that you have places where you can be completely honest about your thoughts and emotions.
Yes, I think your positivity is a great help and enjoy your new appetite.
Please keep posting what is going on for you and what you are getting up to.
Thank you so much for sharing with us and be kind to yourself