Pleomorphic Xanthoastrocytoma with Anaplastic Features

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  • New Delhi
    New Delhi Member Posts: 9
    #22
    RT and TMZ After Effects

    My wife had surgery for removal of tumer, Anaplastic PXA (WHO Grade III) on 15 May 2017. She had 30 sessions of IGRT and 45 doses of 120 mg Temozolomide/day. This treatment lasted a week ago.Toleretated well. Now one month rest then they will start Telozolomide again. MRI after 3 months. But now she is feeling fatigued, naucea and vomitting. Wakes up in night also. Eats very little for fear of vomitting and she has lost taste. But these things started after completion of first round of treatment. Complains headache sometimes. Are these symptoms common. We are worried.

  • New Delhi
    New Delhi Member Posts: 9
    #23
    Anaplastic PXA (WHO Grade III)

    When I read that this is very rare type of cancer and the effectiveness of Radiotherapy and Telozolamide in treatment of it are not established, I feel very low. But after reading messages I realise that many people have loved ones suffering from it. I feel I am not alone on earth. Survival stories give me hope.

  • Danigirl1982
    Danigirl1982 Member Posts: 3
    #24
    huxley2006 said:

    PXA LTS (Long Term Survivor)
    I was diagnosed with a PXA in 1994 had a recurrence 16 years later (2010.It came back as a PXA with anapalastic features. I went through a second surgery, IMRT Radiation and Chemo. To date feel great and scans have been clean.

    As far as malignant brain tumors go, you could do worse than a PXA. They can be unpredictable and can progress quickly or they can languish for many years without any discernable progression. The best predictors of LTS are Mitotic Index, Necrosis and extent of resection. People who have an anaplastic PXA's have a gross total resection, little to know necrosis and a Mitotic index < 5. Tend to do fairly well (relatively speaking).
    Other factors such as location, age, general fitness, etc also play a role in long term survival.
    Although these things play a role in surviving other types of malignant brain tumors by in large (GBM and anapalastic astorcytoma they follow a much more predictable path then anapalstic PXA’s.

    Hope this helps!
    Hux

    Pxa

    hello I have an 8 year old daughter that has pxa had surgery march 2017 then radiation and her tumor grew back she is currently on tafinlar oral chemo. We have her MRI sept 20th and results the 22nd praying it's shrinking 

  • Danigirl1982
    Danigirl1982 Member Posts: 3
    edited September 2017 #25
    kkaramos said:

    Survivor !!!!

    Hi there,

    My son was diagnosed with a PXA with anaplastic features on October 26th, 2005.  We have a caringbridge site set up and his password is specialk  Please feel free to e-mail me or check out his site.  Just thought I would give you some hope and to let you know there are survivors out here. 

    Hello what procedures and

    Hello what procedures and treatment did your son go through? 

  • Kezzerd
    Kezzerd Member Posts: 5
    edited February 2018 #26
    shoales said:

    Anaplastic PXA grade 3 tumor

    Hi there.  My 15 year ol daughter was recently diagnosed with an Anaplastic PXA grade 3 tumor.  She had a total gross resection on 2/13/17 and is starting radiation treatment in about 2 weeks.  Can you tell me how your son is doing?

    Update

     I am so sorry for not getting back to you sooner ,

     I don’t check this site very often these days ,  my son is doing amazingly well and is currently skiing in Austria on the school ski trip 

     Please feel free to email me directly.

    i hope your all doing well ?

    kerrie

  • blueskydk6
    blueskydk6 Member Posts: 1
    edited August 2018 #27
    My daughter 4 yr old,
    My daughter 4 yr old, suffering from PXA WHO grade II,on right side of her brain.It was operated on 9 Jul 2018.That time the size was 1.5cm.
  • Koda
    Koda Member Posts: 3
    edited September 2018 #28
    New Delhi said:

    RT and TMZ After Effects

    My wife had surgery for removal of tumer, Anaplastic PXA (WHO Grade III) on 15 May 2017. She had 30 sessions of IGRT and 45 doses of 120 mg Temozolomide/day. This treatment lasted a week ago.Toleretated well. Now one month rest then they will start Telozolomide again. MRI after 3 months. But now she is feeling fatigued, naucea and vomitting. Wakes up in night also. Eats very little for fear of vomitting and she has lost taste. But these things started after completion of first round of treatment. Complains headache sometimes. Are these symptoms common. We are worried.

    How is your wife doing?

    How is she doing.  It has been over a year.  I do not see too many updated posts on this site, but I hope to find out more about what to expect for my wife.  She just had surgery and will soon start RAD and TEMO.  I would really like to hear how people are handling the treatments and their outcomes.  Fingers crossed for everyone affected.

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