Anyone else having this problem?

firencub
firencub Member Posts: 1
in Childhood Cancers #1
On 8/7/09 my daughter, Courtney was dx with Pre-B ALL at age 13. As of 1/2010, she became weak and lost her ability to walk,she received vincristine that was stopped and continued with 6mp and MTX, she has been wheelchair bound since then. During her treatment we found out that she could not tolerate the full dose of her chemo treatment, genetic test was positive. Courtney had a very rough 2 1/2 years with her treatment, if it could happen it did to her. On 12/22/11 she finished her treatment and is cancer free! So very grateful for that! Courtney is in physical therapy 3 times a week and able to take steps and short walks with a walker. I would like to know if anyone else is or has gone through this? I have many questions. The doctors have not dealt with this and we feel lost. Any advice will greatly be appreciated.

Comments

  • ATLjessica
    ATLjessica Member Posts: 1
    #2
    I am a survivor of Ewings
    I am a survivor of Ewings Sarcoma (had a tumor removed from my spine when I was 16). I had similar symptoms - lost the ability to walk (temporarily) and had Vincristine. I'll be honest, I had horrible side effects from Vincristine, some of which still plague me today. I would lose my balance or fall suddenly (luckily never any broken bones or sprained ankles). My oncologist told me it could "eat away" at the tissue around joints. To this day (10 years later), I still have creaking pain in my knees. Any other chemos? Another tough one was Adriamicin (sp?). I hope Courtney is doing well today!
  • vicky6096
    vicky6096 Member Posts: 1
    #3
    Hi Fireclub
    I had ALL
    Hi Fireclub

    I had ALL Protocol-B but was diagnosed back in Jan 2000 (so the protocol has probably changed a lot since then). I too had vincristine and found that I struggled to walk. At the time I was diagnosed I was 12 and for a while I used a wheelchair due to either lack of energy or pain. The interesting thing is back then I was also on a trial drug, which was a steroid called dexamethazone and it had never been used before. Last I heard, they still use it today but just not as high a dose, or they rotate it with other steroids where as I was on it continuously. I believe it was used to protect us against the chemo, esp vincristine because it was such a powerful drug.

    The steroids have a very rare side effect that can cause issues with walking or weekend bones. I was unfortunate to get osteonecrosis (where the bone crumbles) of my upper knee bone. (I wouldn't worry about your daughter having it, like I say its very very rare and they do not use that dosage anymore, it was a trial drug at the time for me and when they did catch what was wrong with my they didn't treat it until after I finished my cancer treatment which wouldn't happen now) Something that is slightly more common however (I believe) with steroids/vincristine is weakness that physio helps sort even if it is a long and timely process.

    To end the story positiveness I was told at the age of 14 I would not be able to walk again due to the osteoarthritis/osteonacrosis and would be in a wheelchair by the age of 20 if not before. A year later I had an operation (again which was a trial and never done before) as a long shot to see if they could help me as I had nothing to lose. Since the op and 2 years on crutches and a lot of physio I am now 24 living a normal life walking completely fine. In fact the only thing my doctor has told me I'm not allowed to do is ride a bike which is a small price to pay considering.

    I hope this helps and if you want to talk feel free to send me a message.
  • nettecg
    nettecg Member Posts: 8
    #4

    I have a young friend also a childhood cancer survivor like myself. As long as I knew her she had to have the aid of braces and watching sticks ( for lack of acurate term) After some time she lost the ability to walk altogether. I think it depends on the treatement and cancer. Unfortunaly I do not recall the type she had.

    But I hope your daughter is doing well and will walk with confidence.

  • dragonG7
    dragonG7 Member Posts: 17
    #5
    I re-learned to walk too

    I was on the ventilator for long and I was bed-ridden for months.

    after that, I had to re-learn how to walk too...

    well, how it started was

    1. relearn to breath on my own

    2. had the head of my bed get put up a bit and see if I can tolerate that and practice sitting in my bed (my whole body supported with all these pillows and cushions)

    3. learn to move my hands a little by little

    ... I don't knwo the orders of things exactly,,, but I had to learn to role myself in bed caues I couldn't do that either... and at the same time, a physiotherapist came and moved my legs, I tried ot do what I was told everyday (even when we didn't have physiotherapy or occupation therapy) ...

     

    fast froward. I learned to stand

    then I learned to walk with a walker but only able to do meters at a time with my therapist holding my pants and walking behind me to make sure I don't fall or what ever...

    I was on the walker for a while, but over time, I could do longer distances and eventually didn't need the walker.

    even after that, it took me time to fully recover to beable to walk longer distances and even when I could walk, I was pretty weak for a while,,, but eventually, I re-gained the ability to walk with no aids and overtime, there was no longer a restriction of distances I could go...

    eventually, I was fully capable of doing everyday activities without any difficulty. :D

    ((oh! and for me, wen I first started walking again, it was painful,,, I was told that it was because I haden't done so in so long))

     

    for me, I went from a pretty horrible physical state, so it took me some time, but with practice and persistance, I got back my strength and physical ability :)

     

    I hope Courtney has a smooth recovery :)

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