pxa

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  • umcrn
    umcrn Member Posts: 22
    adrianav said:

    I was told my the first
    I was told my the first neurosurgeon that it would never grow back and now that I've learned it does, I worry about it coming back again. After your surgery, did you ever feel like your normal self again?
    -adriana

    I do feel pretty much back
    I do feel pretty much back to normal! I guess I was one of the lucky ones. I have some lingering fatigue, not so much on a daily basis but I need a LOT of sleep after working a few days (I work 3, 12 hr shifts a week) so when I do two or three in a row it takes about 14 hrs of sleep & a lazy day to recover. Other than that I've not had a single headache, though when I get twinges or minor pains (I can't call them headaches because the ones before were SO bad) I do always start to worry. I haven't had any of my other visual symptoms either. Hoping it stays this way! (my hair is almost 4 inches long now too! I was just shaved across the front, ear to ear)
  • Lil moe
    Lil moe Member Posts: 6
    adrianav said:

    Sorry getting back so late.
    Sorry getting back so late. My tumor was on the occipital lobe, but it had been there for quite some time and had begun scalloping into my skull. I have a check up on Monday, I will update when I get back from Houston :)
    -adriana

    Pxa
    My son is only 10 years old and had two surgery and he also has pxa ll. For about a month my son has been having head but he also has the flashing of the light too. The doctor's told us he has had this since birth. It was also the size of a golf ball. You have not posted anything for a few months. I hope u r ok.
  • Lil moe
    Lil moe Member Posts: 6
    adrianav said:

    Sorry getting back so late.
    Sorry getting back so late. My tumor was on the occipital lobe, but it had been there for quite some time and had begun scalloping into my skull. I have a check up on Monday, I will update when I get back from Houston :)
    -adriana

    Pxa
    My son is only 10 years old and had two surgery and he also has pxa ll. For about a month my son has been having head but he also has the flashing of the light too. The doctor's told us he has had this since birth. It was also the size of a golf ball. You have not posted anything for a few months. I hope u r ok.
  • adrianav
    adrianav Member Posts: 9
    Lil moe said:

    Pxa
    My son is only 10 years old and had two surgery and he also has pxa ll. For about a month my son has been having head but he also has the flashing of the light too. The doctor's told us he has had this since birth. It was also the size of a golf ball. You have not posted anything for a few months. I hope u r ok.

    I'm sorry to hear about your
    I'm sorry to hear about your son. I hope he gets well soon, much too young to deal with this, but he must be a strong kid. I went back for an MRI the first week of October and they werent sure if I had radiation necrosis or reoccurring tumor this week I went back for an MR spectroscopy for a more detailed look. Looks like it's back, and I am scheduled for another surgery on October 31st. My doctor says there is a higher risk with losing the paripheral vision in my right eye. If this doesnt work, we will try chemo and BRAF inhibitor. Im hoping that this 3rd surgery will be the charm and I can move on.
  • Lil moe
    Lil moe Member Posts: 6
    adrianav said:

    I'm sorry to hear about your
    I'm sorry to hear about your son. I hope he gets well soon, much too young to deal with this, but he must be a strong kid. I went back for an MRI the first week of October and they werent sure if I had radiation necrosis or reoccurring tumor this week I went back for an MR spectroscopy for a more detailed look. Looks like it's back, and I am scheduled for another surgery on October 31st. My doctor says there is a higher risk with losing the paripheral vision in my right eye. If this doesnt work, we will try chemo and BRAF inhibitor. Im hoping that this 3rd surgery will be the charm and I can move on.

    Sorry about your news
    It's seem like everyone gets chemotherapy with pxa. But with my son they do want to do chemotherapy. Did your surgery get the full tumor out the first time. How did u feel after your surgery Fabian is tried all the time and some time it affects his homework. Did this happen with you?
  • umcrn
    umcrn Member Posts: 22
    Lil moe said:

    Sorry about your news
    It's seem like everyone gets chemotherapy with pxa. But with my son they do want to do chemotherapy. Did your surgery get the full tumor out the first time. How did u feel after your surgery Fabian is tried all the time and some time it affects his homework. Did this happen with you?

    I did not get chemo or
    I did not get chemo or radiation with my tumor. I got second opinions on the pathology, my treating hospital feels I have an "unusual" low grade circumscribed astrocytoma, which when talking with my surgeon is basically saying PXA without giving it the definite name. My two other opinions hospitals said it was an anaplastic PXA though I never got second opinions at the treatment. I do trust the hospital I am at currently and am still getting MRI's every three months, have an oncologist & radiation oncologist if it regrows and I need them. In any case, like I said, I had a full resection and no other treatment at this time. 10 months later still doing well.

    I also am more tired than I remember before all this happened. I work full time but only three days a week and on my days off sometimes find myself needing 12-14 hours of sleep to recover.

    Hope your son is doing well!
  • huxley2006
    huxley2006 Member Posts: 27 Member
    adrianav said:

    I'm sorry to hear about your
    I'm sorry to hear about your son. I hope he gets well soon, much too young to deal with this, but he must be a strong kid. I went back for an MRI the first week of October and they werent sure if I had radiation necrosis or reoccurring tumor this week I went back for an MR spectroscopy for a more detailed look. Looks like it's back, and I am scheduled for another surgery on October 31st. My doctor says there is a higher risk with losing the paripheral vision in my right eye. If this doesnt work, we will try chemo and BRAF inhibitor. Im hoping that this 3rd surgery will be the charm and I can move on.

    PXS
    adrianav,

    As I probably said before, your story is very similar to my own. Also had 3 surgeries, last one turned out to be mostly Necrosis. 2 + years out since last surgery and 19+ since initial diagnosis.

    I lost peripheral vision in my left field of vision during my first surgery back in 1994. A little disorienting the first few months but don't even notice after a while. Was able to drive as well but that was something you need to be very careful with. Good luck on the surgery (third times a charm!) and please keep me updated.

    Hux
  • huxley2006
    huxley2006 Member Posts: 27 Member
    adrianav said:

    I'm sorry to hear about your
    I'm sorry to hear about your son. I hope he gets well soon, much too young to deal with this, but he must be a strong kid. I went back for an MRI the first week of October and they werent sure if I had radiation necrosis or reoccurring tumor this week I went back for an MR spectroscopy for a more detailed look. Looks like it's back, and I am scheduled for another surgery on October 31st. My doctor says there is a higher risk with losing the paripheral vision in my right eye. If this doesnt work, we will try chemo and BRAF inhibitor. Im hoping that this 3rd surgery will be the charm and I can move on.

    PXA
    adrianav,

    As I probably said before, your story is very similar to my own. Also had 3 surgeries, last one turned out to be mostly Necrosis. 2 + years out since last surgery and 19+ since initial diagnosis.

    I lost peripheral vision in my left field of vision during my first surgery back in 1994. A little disorienting the first few months but don't even notice after a while. Was able to drive as well but that was something you need to be very careful with. Good luck on the surgery (third times a charm!) and please keep me updated.

    Hux
  • adrianav
    adrianav Member Posts: 9
    Lil moe said:

    Sorry about your news
    It's seem like everyone gets chemotherapy with pxa. But with my son they do want to do chemotherapy. Did your surgery get the full tumor out the first time. How did u feel after your surgery Fabian is tried all the time and some time it affects his homework. Did this happen with you?

    unanswered questions
    This has been a very frustrating time for me. The surgeon at MD Anderson was confident that it would all be removed this last time. I was tired as well, I had to drop a few semesters. He needs all the rest he can get. I had some difficulty concentrating and still do, which was never normal for me. I have not gone through chemo yet because my doctor did not think it would be effective for this tumor, but he says it is now an option if surgery does not work. how is he feeling lately?
  • adrianav
    adrianav Member Posts: 9
    Lil moe said:

    Sorry about your news
    It's seem like everyone gets chemotherapy with pxa. But with my son they do want to do chemotherapy. Did your surgery get the full tumor out the first time. How did u feel after your surgery Fabian is tried all the time and some time it affects his homework. Did this happen with you?

    unanswered questions
    This has been a very frustrating time for me. The surgeon at MD Anderson was confident that it would all be removed this last time. I was tired as well, I had to drop a few semesters. He needs all the rest he can get. I had some difficulty concentrating and still do, which was never normal for me. I have not gone through chemo yet because my doctor did not think it would be effective for this tumor, but he says it is now an option if surgery does not work. how is he feeling lately?
  • adrianav
    adrianav Member Posts: 9

    PXA
    adrianav,

    As I probably said before, your story is very similar to my own. Also had 3 surgeries, last one turned out to be mostly Necrosis. 2 + years out since last surgery and 19+ since initial diagnosis.

    I lost peripheral vision in my left field of vision during my first surgery back in 1994. A little disorienting the first few months but don't even notice after a while. Was able to drive as well but that was something you need to be very careful with. Good luck on the surgery (third times a charm!) and please keep me updated.

    Hux

    vision
    I was told there is a much higher risk for the vision loss this time, which I'll admit I'm starting to get anxiety about. More or less, how long did it take you to fully adjust? Were there any exercises that helped you? I'm having difficulty focusing and some memory loss as well
  • huxley2006
    huxley2006 Member Posts: 27 Member
    adrianav said:

    vision
    I was told there is a much higher risk for the vision loss this time, which I'll admit I'm starting to get anxiety about. More or less, how long did it take you to fully adjust? Were there any exercises that helped you? I'm having difficulty focusing and some memory loss as well

    Vision
    The Vision loss will be fairly traumatic initially.
    It will not be safe for you to drive initially.
    You will probably have some problems walking up and downstairs initially
    Problems reading initially
    You will walk into things a lot initially.
    There will probably be noise (lights, swirls, distortions) in the blind spot of your vision initially as the mind tries to make sense of the missing information.
    The important word here is INITIALLY. Long term, losing your peripheral vision should not debilitate you in any appreciable way. You will eventually learn to compensate for the loss and within a few months you should be back on your feet.
    Driving is something my doctors didn't recommend I ever doing again (back in 94). Within 3 months or so I was driving without much issue. There is a definitive deficit that you will need to be very aware of when you drive but it is certainly possible to compensate for that deficit.
    The choice about driving will be up to you though. You don't want to hurt someone because of this issue.
    I did not see anyone about this and more or less worked it out on my own but am sure the hospitals will offer some sort of OT for this sort of thing.
    I also have some short term memory issues as well but am able to function at a very high level. People at the office sometimes good naturedly (I Hope) refer to me as an absent minded professor. When I lack in memory I make up for in other ways. I am still able to work at a high paying and high demand job.


    Hux
  • adrianav
    adrianav Member Posts: 9

    Vision
    The Vision loss will be fairly traumatic initially.
    It will not be safe for you to drive initially.
    You will probably have some problems walking up and downstairs initially
    Problems reading initially
    You will walk into things a lot initially.
    There will probably be noise (lights, swirls, distortions) in the blind spot of your vision initially as the mind tries to make sense of the missing information.
    The important word here is INITIALLY. Long term, losing your peripheral vision should not debilitate you in any appreciable way. You will eventually learn to compensate for the loss and within a few months you should be back on your feet.
    Driving is something my doctors didn't recommend I ever doing again (back in 94). Within 3 months or so I was driving without much issue. There is a definitive deficit that you will need to be very aware of when you drive but it is certainly possible to compensate for that deficit.
    The choice about driving will be up to you though. You don't want to hurt someone because of this issue.
    I did not see anyone about this and more or less worked it out on my own but am sure the hospitals will offer some sort of OT for this sort of thing.
    I also have some short term memory issues as well but am able to function at a very high level. People at the office sometimes good naturedly (I Hope) refer to me as an absent minded professor. When I lack in memory I make up for in other ways. I am still able to work at a high paying and high demand job.


    Hux

    off to Houston
    Hux, I very much appreciate you sharing your story with me. I feel as if it helped me prepare for some challenges that I may face. I may not be able to check back for a few weeks but here is the link to my caring bridge site that I started to keeps friends and family updated.
    Adriana



    http://m.caringbridge.org/visit/adrianavela/journal
  • uli
    uli Member Posts: 3
    audra pxa said:

    Treatment
    Hey Kim~
    I really hope the best for your son. My suggestion would be to get a second opinion. You can read my previous posts and story above or at my caring bridge site....site name is : audra. My physicians suggest that when my tumor recurs they will treat it again with chemo. Unfortunately we are starting to see what appears like a 4th recurrence on my last scan. My doctor said because the tumor is so rare and no good studies have been done on it that they have to treat it like an astrocytoma..which is "most" like it. On my 2nd recurrence my tumor was partially resected and we did radiation at that time. Overall, I think they should be doing some sort of treatment for your son. So please seek out a second or even third opinion. Also comtinue with frequent MRI's. I get scanned every 3 months.

    pxa

    Hi, may I ask what chemo you recieved?

  • uli
    uli Member Posts: 3

    Daughter with PXA
    Hi all, I am new here. It's such a relief to find people who are dealing with this as well. My daughter is 22 years old. She was diagnosed with PXA when she was 15. I took her to St. Judes. They were fantastic! The tumor was in her left temporal lobe. They thought they got it all.
    The tumor came back when she was 20. Surgery again. It came back at 21.
    Her last surgery was July 3, 2009. Her doctor said the tumor was against her brain stem. They took what they could, and radiated what was left. They have given her statistics as to life expectancy, but I really am certain there has to be something out there to cure this. I found online that Lund University in Sweeden has some promising things going on. I'm going to research that further. I am not as medically well versed as the rest of you are. Your knowlege of medical terminology is impressive. I'm just a mom that is trying to understand what my daughter is going through so I can help her. She is sick and throwing up all the time, she lost 13 lbs in two weeks. Her hearing has been affected, she said it sounds like she's under water. Doctors don't really know why. Is anyone else having that problem? The medical answer is steroids to help with her appetite. Of course that is a short term solution. Her Oncologist is Dr. Kevin Palka at Vanderbilt. Of all of the Doctors my daughter has seen over the years, he is by far the best. I totally trust him, but I would like to hear from other people fighting PXA what their symptoms are and what helps. Also as her caregiver and the one that loves her the most, I'd like to know from other people with PXA what is helpful caregiving and what to steer away from.

    pxa

    My daughter also has this type of tumor. I would be very interested in any info you may have she is only 26yrs so I am very desperate also.

  • jmac4585
    jmac4585 Member Posts: 11
    cschade said:

    update 4/2012
    I noticed that not very many people return to this posting, so it was hard for me to see what the outcomes were of any of the other PXA patients, which is why I wanted to be sure I reported back that my Frank passed away on Monday April 2. I am not sure what caused his tumor with basically no mitotic activity to grow and spread down the spine, but it is definitely what caused his death.

    If any of you ever want information on what we went through, what our doctors told us, or the progression of his disease please don't hesitate to contact me.

    Cschade

    Cschade, 

     

    So sorry for your loss.  My wife had a PXA removed on 10 Dec 2012 and has been having lower back, neck and back of head pains since the end of December.  She's had a lower back MRI and a CT on her head with mostly negative results.  A neurologist says he sees tumors near her nerves in her lower spine, but our neurosurgeon doesn't think that's what it is at all.  Can you explain your husbands a little to me please.

     

    God bless and thank you,

     

    Jake

     

  • 123Karen
    123Karen Member Posts: 1
    cschade said:

    update 4/2012
    I noticed that not very many people return to this posting, so it was hard for me to see what the outcomes were of any of the other PXA patients, which is why I wanted to be sure I reported back that my Frank passed away on Monday April 2. I am not sure what caused his tumor with basically no mitotic activity to grow and spread down the spine, but it is definitely what caused his death.

    If any of you ever want information on what we went through, what our doctors told us, or the progression of his disease please don't hesitate to contact me.

    Frank's Passing

    My heart goes out to you regarding Frank's passing.  I'm a 50 year old woman with PXA.  I've had current surgeris and two types of chemo.  The last treatment of CCNU was tough but looks good since 10/13.  I know there isn't a cure, but I find great satisfaction and comfort knowing as much as I can about my situation.  I appreciate your information about the cancer spreading to his spine.  I've worried about that myself since I have arthritus and sometimes in much pain, I won't feel silly about asking if I can get MRI done of the spine.

    I hope you find peace and acceptance of your loss. And thank you so much for telling us how it all went.  I appreciate that.

    Thank you.   123Karen