Just diagnosed

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Hello. After a routine medical check up in January, several abnormalities in my blood were detected. Tests and a scan followed and it was attributed to lupus. However, I had a sixth sense something else was wrong and insisted on a bone marrow biopsy. Had this last Wednesday and got call on Thursday with devastating news I had AML. Aside from tiredness I am asymptomatic. I considered myself fit and healthy. I go to the gym and Nordic walk 3 times a week. Yesterday I walked 7 miles, no problem. It feels surreal, I feel like it’s a bad dream I can’t wake up from. I already suffer from anxiety and this has now gone through roof. I can’t sleep, feel constantly nauseous and am very worried about my weight. I only weigh 49 kg and am scared my weight is going to plummet during treatment and I’ll be too weak to get through it. I can’t bring myself to research this condition. I have been overwhelmed with support from family and friends but I am still utterly terrified of what’s to come. Would appreciate any tips and advice on how to manage my anxiety in coming months. Thank you xxx

  • Hi, I have a rare form of AML called Myloid Sarcoma. I was diagnosed in December 2020 and was in remission May 2021, however, recently I have been told it has returned. I am now due to go in for 4 weeks of chemo then a bone marrow transplant. It is only natural to be anxious and nervous but what got me through the last time was staying positive, active and determined. Keeping to your normal routine as much as you physically can can also help. You will have up days and down days but just stay positive. Talk when you need to talk and never give up. You have got this Muscle

  • Hi ya. Hope your doing OK.

  • Thanks for your post. Sorry to hear your AML came back. I’m on day 4 of 24/7 chemo and struggling. Having awful side effects, nausea,vomiting and very itchy skin rash. Am trying to stay positive but not sure I have the resilience to cope with this. All I want to do is sleep to block out the nightmare. Can’t imagine ever feeling well again. 

  • The side effects are Horrid but you will get through it. Sleep as much as possible and just try and keep yourself busy. Find something good to watch on TV. I found doing a cross stitch really relaxing and gave me something to focus on and finish.

    You have got this. Believe me, if I done it, so can you.

    Always here for a chat if you need to. Nice to know there are others going through the same thing.

    Where are you in the UK?

  • Hi Coot

    Sorry to hear you are struggling.

    Stay as positive as you can, this is your first round of treatment so you don't know what to expect. My wife felt as you do now at this point and had very similar side effects. This is generally the worst time for you as it being your first.

    Once your through this and your team get you in a good place, I'm sure that things will Improve. My wife has always said the first session was the worst,even more so than her Stem cell transplant treatment last year.

    Stay strong Coot, you will start to improve. Your body is taking a major shock, try to be positive, its hard, I know, but you can do this and you will.

    ALL THE BEST

    Fulhamboy (Nick)

  • Thanks. I live in Upminster but am being treated in London. 

  • Hi,

    I'm due to go into Addenbrookes too you must be local to me.

  • Hello Marsha, a wide catchment area I suspect, I am near King's Lynn, getting my primary treatment at the McMillan Centre in QE2 hospital in King's Lynn. I had nne interview and blood tests in Addenbrooks and my 2nd visit next week. STC is prob 2months + in future.

    Do you have a firm admission to Addenbrooks yet?

  • Hi,

    I'm in Addenbrookes now. Was admitted Wednesday evening. Haven't started any chemo yet, that is later. Got the FLAG-IDA chemo before the future SCT.