Acute lymphoblastic leukaemia

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

Headaches

Skittles
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? 


Thanks!

Thehighlander
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 - Thehighlander

Some journeys take us far from home but some adventures lead us to our destiny CS Lewis

SCT NHL TCell

Skittles
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! 

Amy

gloria c
Posted by

Hay Skittles,

hope you;'re doing well, my nephew was also diagnosed 1 week before his 18th birthday, with ALL and he too is suffering from headaches, stemming from his head and running down his neck. we're not sure why, could be a combination of things, meds, chemo etc. 

Tell me, you said you were in remission, how long after your chemo sessions, 4 weeks ? 8 weeks? because after 4 weeks they told  my nephew that he was clear of the cancer in his bone marrow, however there was some residue left.

According to doctors, ideally it should not exceed 0.01% my nephew had 0.2% left over, so he is still not out of the woods. He also has something called ph like philadelphia chromosome, with chromosome 22, and so they have added 2 or 3 more meds for him to take. 

so now he is part of a study due to his age ,  they feel that the younger you are , the more chances you are able to overcome this disease, obviously with older individuals, 60. 70 ALL leukemia is harder to overcome.

good luck, would like to share any info you have .

 

gloria c
Posted by

Hay Skittles,

hope you;'re doing well, my nephew was also diagnosed 1 week before his 18th birthday, with ALL and he too is suffering from headaches, stemming from his head and running down his neck. we're not sure why, could be a combination of things, meds, chemo etc. 

Tell me, you said you were in remission, how long after your chemo sessions, 4 weeks ? 8 weeks? because after 4 weeks they told  my nephew that he was clear of the cancer in his bone marrow, however there was some residue left.

According to doctors, ideally it should not exceed 0.01% my nephew had 0.2% left over, so he is still not out of the woods. He also has something called ph like philadelphia chromosome, with chromosome 22, and so they have added 2 or 3 more meds for him to take. 

so now he is part of a study due to his age ,  they feel that the younger you are , the more chances you are able to overcome this disease, obviously with older individuals, 60. 70 ALL leukemia is harder to overcome.

good luck, would like to share any info you have .

 

Paul1969
Posted by

Hi Amy and Gloria

I had ALL diagnosed when I was 42. During the treatment I had lumbar punctures with methotrexate during round 2 of my chemo and it gave me debilitating headaches that kept me in bed for a week plus afterwards and when I did get out of bed I was so dizzy I used to be sick.

it passed after that round was finished.. I can’t remember exactly how long afterwards as it was a while ago.. I went on to have stem cells    In May 2013 and whilst there were a few glitches after the transplant with some GVHD I am now leading a very normal life.

i hope the headaches pass soon.

Paul