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pxa

fst
Posts: 1
Joined: Mar 2005

Hi, anyone out there have or heard of dx Anaplastic PXA (Pleomorphic Xanthoastrocytoma). My husband was diagnosed 7/01 (original dx was just PXA) right temporal lobe. Surgery followed by monitoring w/MRI. Recurrence 10/01, sugery showed it more aggressive, so dx "anaplastic" PXA. Had 4 wks hyprefractionated rad with Temodar, then proton boost at MGH, Boston. Stable during maint. chemo of Tem,Accutane,celebrex for about 18 mos., then recurrence a few mos. after stopping in right parietal lobe on dura (10/03). Surgery ...same dx. MRI after surgery showed drop mets on spine...inoperable. Did CPT-11/Temodar, then spine rad (focused). Then vp-16, spine stable, but recurrence in parietal lobe dura 1/05, surgery, now following it with focused proton beam rad tomorrow. Not sure what the next step in terms of chemo should be. Rad seems to be effective for this tumor. What has anyone else's experience with this been?

fst

huxley2006
Posts: 25
Joined: Oct 2010

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's picture
adrianav
Posts: 9
Joined: Apr 2012

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
Posts: 25
Joined: Oct 2010

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's picture
adrianav
Posts: 9
Joined: Apr 2012

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

Lil moe
Posts: 6
Joined: Apr 2012

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.

jmac4585
Posts: 11
Joined: Feb 2013

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
Posts: 1
Joined: Mar 2014

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

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