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Pleomorphic Xanthoastrocytoma with anaplastic features

uli
Posts: 3
Joined: Dec 2012

Any info on treatment greatly appreciated my daughter is only 26 and has been given not much encouraging hope

umcrn
Posts: 22
Joined: Jun 2012

Has she had it removed? What have they told her?

I am 25, I was diagnosed with a PXA with anaplastic features one year and one month ago. I had three pathologists look at my tissue, two called it the PXA w/ anaplastic features, one called it an unusual low grade tumor with anaplastic features. Accoriding to my surgeon and oncologist basically comparing tomATEoes and tomAToes at this point. I had a full resection December 2011 and have had 3 month scans ever since but no other treatments at this time. We are taking the "watch and wait" approach. My doctors all seem to agree that it will grow back but they differ on when. My oncologist estimates 1-5 years while my surgeon thinks more like 10-20. As far as I know at this point a recurrence would be treated with surgery and/or a combo of surgery, radiation and chemo depending on what new pathology showed. 

I've done a bit of research on it but am certinaly no expert. If you ahve any questons about my experience please feel free to ask. I also blogged a little bit about my experience which you can see here: http://anurseturnedpatient.blogspot.com/

 

Good luck! I hope you get the answeres you are looking for and hope your daughter is doing well, if she has any questions for me please feel free to have her contact me!

 

Erin

jmac4585
Posts: 11
Joined: Feb 2013

Her's was on her frontal lobe about 3 cm in diamater and removed on 10 Dec 2012.  She is doing alright, a lot of back pain going on right now though.  Headaches and neck pain as well.  They did an MRI on her lower back with pretty much negative findings, she has another head, neck and upper back MRI scheduled on the 19th of this month.  We are also seeing a Neuro-Oncologist in San Francisco pretty soon and hoping for the best!  Good luck to both of you, I will remember you in my prayers.

 

Jake

Suz222's picture
Suz222
Posts: 3
Joined: Jan 2013

Hi Jake:

Is your wife going to see Dr. Prados at UCSF?  He is superb - very qualified but I found a straight talker.  Expect kindness and exceptional competency but no sugar coating.

All the best!

jmac4585
Posts: 11
Joined: Feb 2013

No she is seeing Dr. Chang for neuro oncology and Dr. Sneed for radiation oncology.  They are both very great so far though.  We just finished week one of radiation on Friday.  Five more to go!

Suz222's picture
Suz222
Posts: 3
Joined: Jan 2013

Hi Jan:

Dr. Chang has an international reputation for excellence!  Your wife is getting the best care available anywhere.  We live in Canada and travelled to UCSF because they're amazing.

jmac4585
Posts: 11
Joined: Feb 2013

I have heard great things!  I am so happy we are able to get this kind of care.  I'll be even happier when they help my wife! :)

Javier Hortal
Posts: 2
Joined: Mar 2013

This is a blog that reports on a brain tumor: pleomorphic xanthoastrocytoma. In the previous postyou can find various information on this tumor.
This post wants people of English accessing this information because the tumor in Spanish or English is not writtenexactly the same.

Este blog está en español pero puede ser traducido.

http://xantoastrocitoma.blogspot.com.es/

 

Javier Hortal

Suz222's picture
Suz222
Posts: 3
Joined: Jan 2013

Hi Jake:

Is your wife going to see Dr. Prados at UCSF?  He is superb - very qualified but I found a straight talker.  Expect kindness and exceptional competency but no sugar coating.

All the best!

huxley2006
Posts: 25
Joined: Oct 2010

I am a 20+ year survivor. I was initially diagnosed in July 1993 Grade 2. Recurrence in July2010 Grade 3/4 . Radiation an Temador. Almost 3 years since recurrence and doing very well.

Your daughter should not give up hope there are many long term survivors of PXA.  I can direct you to some stories of fellow survivors to read about if your daughter is interested.

As far as malignant Brain tumors go PXA's are like winning the lottery. There is a real chance for Long Term survival.

 Feel Free to reach out to me if you have any questions. 

Good Luck

Hux

 

jmac4585
Posts: 11
Joined: Feb 2013

Well, my wife's tumor has spread through her CSF.  It's in her back now.  That's what has been causing back and neck pain, i guess little tiny tumors growing on the ends of her nerves.  The doc called me a couple of hours ago and said they are going to do radiation on her entire head and spine now.  Praying for the best, I don't know what I would do without my wife.  PXA wasn't the lottery for us so far.

huxley2006
Posts: 25
Joined: Oct 2010

Sorry for your situation.....

Hux

umcrn
Posts: 22
Joined: Jun 2012

I don't want to ruffle any feathers but I feel like that as someone with a brain tumor you would be a little more sensitive and not write things like "PXA is like winning the lottery". While from the research I have done shows that most PXA's have a good outcome there are those with anaplastic features that can spread rapidly and become deadly. I am in contact with a mother who lost her 26 year old son to "just" a PXA that recurred as a GBM. And I'm sure there's someone out there with a PXA maybe in their brainstem...that's not going to work out so well either. 

When people give statistics I always have to remind myself (or them) that a statistic means nothing to the person living it. So what if there's a 99% survival rate, it's not going to matter if you're in that other 1%, or vise versa if there's a 99% fatality rate and you wind up in that other 1%, statistics don't matter on an individual level in my opinion. As a nurse that works in a pediatric cardiac intensive care unit I know that we are full of "statistics" but ask any one of those parents living it and the stats don't matter, only what happens to their child matters and no two situations are ever identical in medicine. 

huxley2006
Posts: 25
Joined: Oct 2010

I agree with everything you said. Didn't mean to minimize the issue or the danger but there is genuine hope here.

Hux....

 

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

umcm, you have a very valid point. I didn't really give a rip about the statistics either. I just wanted my son to live. Hux, what a gracious reply! I understand exactly what your intent is, and if I had this form of cancer or my chiid or any loved one was battling it, I would be so very grateful for the hope you have to offfer.

Cancer sucks, sucks, sucks. I lost my son that I loved with all of my heart on October 15th. I feel like my life has been shattered. I take comfort in reading about others who are winning the battle.

Love and blessings to you both,

Cindy 

in Salem, OR

huxley2006
Posts: 25
Joined: Oct 2010

Thank You Cindy.

In any event have my 3 month scan results in a few hrs. Today I don’t feel like a lottery winner J

 

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

There's a reason why people refer to the time period before MRIs, CTs and PET as being so very difficult and having "scanxiety" When I just typed that word, spellcheck autocorrected it--correctly. I guess it's become part of our lexicon. Anyway, I'm praying that you will get a great report. Stay strong! I know it's almost impossible, but trying will help you a little bit. A few times I have in to the fear and cried my head off, thinking I needed the release, but it actually it made things harder. 

Love, blessings, peace and strength to you,

Cindy in Salem, OR

huxley2006
Posts: 25
Joined: Oct 2010

Thanks Cindy...appreciate the kind words.

Received the all clear. I have been doing this for 20 years. It gets easier to some degree  but never get used to it...If that makes sense.

 

Hux....

 

 

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

So very deeply glad that you got a great report! And I totally understand about how you can't get used to it.....

Peace and blessings to you,

Cindy in Salem, OR

Javier Hortal
Posts: 2
Joined: Mar 2013

This is a blog that reports on a brain tumor: pleomorphic xanthoastrocytoma. In the previous post you can find various information on this tumor.
This post wants people of English accessing this information because the tumor in Spanish or English is not written exactly the same.

http://xantoastrocitoma.blogspot.com.es/

 

Javier Hortal

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