Diagnosis

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Hi I was diagnosed with ALM Leukaemia with the FTL3 mutation days before Christmas 2023, was a total shock things moved very quickly started chemo 2 days later which had some weird n strange side effects. After a month I went home lasted 10 days before I got readmitted as temp spiked , I've got my bone marrow biopsy soon which I'm totally dreading then a 2nd round of chemo which I think is going to be at home threw a pump which scares me not having the safety net u have in hospital. I'm 43 have 2 grown up kids that still live with me I'm single so apart from my brother I'm prity much alone . It's the not knowing if I'm going to get threw this that messes with my head the most . 

  • Hi, hope you dont mind me popping on i see you are dreading your bone biopsy. I had one 2 weeks ago and was absolutely dreading it. When i spoke to my consultant radiologist about my fears he said i could be sedated as most patients are. I did have sedation and it was great dont remember much. All i felt was the anesthetic going in ( no pain at all ) and then a small amount of pressure on the scale it would of been 3 out of 10 so really pleased. I cant believe i am going to say this but if i had to have another i probably would not bother with sedation, it only 10 minutes and its over. Hope this helps 

  • I think I'm dreading it more because when I had my picc line put in it was horrendous took over and hour n half to get it right n that plays on my mind .

  • Ohh i bet it does, My friend had a picc line and she said it was painfull. Please ask for a sedation if you are at all worried, there is no need to have this procedure without. They dont offer them as if sedated you have to stay in for a couple of hours after your procedure ( no problem for me haha ) we only have to ask. I said i have have run out of bravery stickers after 20 years of different treatments and give me as much sedation as you have got mate. Hope all goes well Dawn

  • Hi  and welcome to this corner of the Community. I am Mike and I keep an eye on our various Blood Cancer groups.

    I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.

    I have had a good number of Bone Marrow Biopsies over my 24 years and honestly they were all ok. A little sting when the area is numbed and some pushing to get the sample. To the point that after a cup of coffee I drive 3 hours home no problem.

    Do talk your concerns through with the person doing the BMB as they can give you something to help.

    For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

    Always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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