Acute lymphoblastic leukaemia

A support group for anyone affected by acute lymphoblastic leukaemia (ALL) to come together, share experiences, and ask questions.


Posted by

Hi everyone, 

I'm 32 and was diagnosed will ALL early March. Currently in remission however Dr's are recommending a stem cell transplant because tests showed i have a higher chance of the cancer returning. I've struggled with lumbar puncture headaches in the past. They were very severe after 1 l.p., was bed ridden for at least a week. For the past couple of weeks I have been getting absolutely awful headaches, they are debilitating. They prescribed me  t3 and hydromorphone but they just dull the pain. They gave me a c.t scan but nothing appeared abnormal. It' strange because I haven' had a lumbar puncture in weeks. 

I had some headaches after the l.p. then they subsided. A couple of weeks after that, I got these headaches. They have a sudden onset, typically at the back of the head and neck but can get them all over sometime. Can usually last 10 minutes, sometimes longer and typically happens in the morning and evening. I will get them standing up and lying down. 

Has anyone experienced anything like this? 


Posted by

Hi , I am Mike  and am dropping in past from our dedicated Stem Cell Transplant Forum.

We have lots of folks from an AML background and a lot of other blood cancer in the group who are looking at, going through or like me have come out the other end of the SCT journey. Have a look round the forum and if we can be of any help just hit 'Start a Discussion' and introduce yourself. It is a very honest and supportive group and we 'all get' the journey.

As to your question, I have not had any lumbar punctures so can't help you with this but lets look for some of the AML folks to come along, you could also put a question to Caroline - Macmillan Heamatology Nurse

I will keep an eye open for you over in SCT Central.

Highlander ((hugs))

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

Posted by

Thanks Mike! I'm new to all of this but it' nice to know that there are others going through the same or similar journey. 

Cheers, and best of luck on your journey!