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Post transplant lumbar puncture chemo

Has anyone experience of these procedures. I am 7 months post SCT and due to have 4 injections over the next 4 months and am unsure of the necessity of having it and any complications. Consultants have told me that there is little risk and there is a chance that the AML could transfer to my spinal cord. Is there anybody who has experienced adverse effects? Thank you.

Comments

  • Hi Martin,

    I had lots of lumbar punctures throughout my treatment as part of the protocol I was on. I then had to have them every 3 months for 2 years post transplant. In all I probably had about 16 lumbar punctures.

    The reason for them as I understand it is that the spinal cord is separated from the main blood system, so any chemotherapy you have had cannot get into the central nervous system to treat any of the Leukaemia that may be present.

    It's quite a straightforward procedure and not too painful, certainly when compared to a bone marrow biopsy!

    Some local anaesthetic will be injected close to the surface to numb your skin, at the base of your back, then a second local slightly deeper. A fine needle is injected between your lower vertebrae and when your doctor feels a slight pop as it enters the spinal cord they know they're in. You barely feel it due to the anaesthetic.

    They will probably draw off some spinal fluid for testing then inject the chemo (I had Methatrexate). The needle is withdrawn and a small dressing applied, then you will probably have to lie flat on your back for a couple of hours to allow the chemo to spread along the spinal chord.

    Only once did I feel anything more, when the needle touched a nerve and made my legs jump! But nothing worse than that which was probably due to me being so weak I was laid on my side with my legs tucked up. Normally the procedure was carried out with me sat on the side of a treatment couch and resting on a table raised at the side of the couch. This arches the back and opens up the vertebrae to allow the needle between.

    Your medical team will explain the procedure beforehand and take you through the risks, but they will be well practiced and will have done many before.

    I hope this helps.

    All the best,

    Steve
  • Hi Steve, many thanks for your reply. Why blood cancer did you have and why did you have so many lumbar punctures. Many thanks, Martin
  • Hi Martin,

    I had ALL and the reason was just down to the protocol I was on (UKALL14 trial). I'm not sure if that was because I was at a high risk of the ALL coming back, so was a belt and braces approach.

    I had chemo for 3 months and one month I had a lumbar puncture every week (4 weeks) with one a month for the other two. Then after my transplant I had to have one every 3 months for 2 years.

    The reassuring thing was that the fluid that was drawn off each time was tested for the presence of Leukaemia and it always came back clear, so it gave me the assurance that my central nervous system wasn't affected.

    The worst effect I ever had was a dull headache for the rest of the day but that was when I was very weak. I'm sure you wont suffer any worse.;

    Cheers,

    Steve
  • Hi Martin,

    I wondered whether you'd had any of your lumbar punctures yet and how you'd found them?

    Steve
  • Hey Martin,

    Like Steve my wife has these every three months for 2 years post transplant. She also has ALL. One of the things the doctors told her was apart from drinking lots of water after the procedure to also include a drink with caffeine in it as it can help to avoid potential headaches. Bring a coffee, coke or a red bull along. It seemed to work for my wife as she never got the headaches.

    Patrick
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