Pleomorphic Xanthoastrocytoma with anaplastic features

huxley2006 said:

Pleomorphic Xanthoastrocytoma with anaplastic features

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

 

I was very interested to read your story.  My husband had a PXA  in 1994.  It was removed and thought that nothing else needed to  be done.  About 6 years ago, they noticed it had returned.  It was very small and thought to be the same thing so they just watched it for awhile.  It was removed Dec. 2013 and the doctor was confident it was the same as before .  The pathology report came back that it was a grade 3.  It has grown somewhat, very slowly, since then.  It's time to do something but we are at a loss of what to do.  Can you give us some info about what you did?  Thanks, Jane

bgk1959 said:

brain tumor

I was very interested to read your story.  My husband had a PXA  in 1994.  It was removed and thought that nothing else needed to  be done.  About 6 years ago, they noticed it had returned.  It was very small and thought to be the same thing so they just watched it for awhile.  It was removed Dec. 2013 and the doctor was confident it was the same as before .  The pathology report came back that it was a grade 3.  It has grown somewhat, very slowly, since then.  It's time to do something but we are at a loss of what to do.  Can you give us some info about what you did?  Thanks, Jane

Sorry for the late reply I don’t come here all that often.  Intial surgery in 1993.  Two in 2010. Radiation and Temador regiment.

2010 Pathology was PXA with Anapalastic  eatures.

So far everything has been OK since the 2 surgeries 2010 surgeries.

Send me an email though CSN and I will send you my email for additional information. Would be great to touch base.

Huxley....

Hello,

My 31 years old brother was diagnosed with PXA with anaplastic features 3.5 years ago. He had 2 operations back then with radiation and chemotherapy. we had over 2 years of just monitoring and 3 months ago the tumour came back. After a full resection my brother was treated with Temodal for 2 months, but the most recent MRI shows a regrowth, so he will need to go through another operation and also, need to think of another chemotherapy as the Temodal is not working.

On the bright side, he had a genetic analysis and found he has a mutation in a gene called BRAF V600E. this is a major discovery as there are studies showing a link between this gene and PXA. there are FDA approved drugs to counter the effect of this mutation, so now we just have to cross our fingers and hope this works.

I do believe the future lies with biological treatment and there are some giant leaps happening out there. Even though PXA is very rare and there are hardly any studies on it, it is linked to other gliomas where you do see progress.

Hope this helps.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017948

https://en.wikipedia.org/wiki/Carfilzomib

bgk1959 said:

brain tumor

I was very interested to read your story.  My husband had a PXA  in 1994.  It was removed and thought that nothing else needed to  be done.  About 6 years ago, they noticed it had returned.  It was very small and thought to be the same thing so they just watched it for awhile.  It was removed Dec. 2013 and the doctor was confident it was the same as before .  The pathology report came back that it was a grade 3.  It has grown somewhat, very slowly, since then.  It's time to do something but we are at a loss of what to do.  Can you give us some info about what you did?  Thanks, Jane

I had a tumor in 1994 that was originally diagnosed as a glioblastoma multiforme but just found out last week they now think it was  Pleomorphic Xanthoastrocytoma.  I was treated with chemo, radiation, craiotomy and stem cell rescue and had a radiation induced meningioma almost exactly 20 years later in 2014. that was removed and required no treaatment. I've been fine since

My wife had brain surgery on 15th of May.  The doctors said that they had removed all of that growth. Now after nearly one and a half month of the operation, I recollect all the symptoms and changes in her behaviour which started about a month prior to the operation.

She used to be an active lady and never showed her phycscal weakness to others. But I started noticing her tired looks. Sometimes she used to drop things like lunch box, forgot to close kitchen cabinets and fridge door and to switch off lights of rooms. We had little arguments over these. Once we were comming out of a party and she stood in the middle of stairs I observed that her left foot was out of sandle. I asked if the footware is broken. She looked at me in a strange way and noded. Actually she was not aware of it. We blamed it on her weakness due to some gynec problem and sought appointment for that. During that period her condition deteriorated. While walking her left hand was not moving freely, left leg also became slow and she started dragging it. Balance of body and sence of judgement were not normal. Later on she told me that during that period she stumbled a few times. But she never told us then. She used to apply balm on right side of her head as there was some heavyness and pain which was not severe.

Finally MRI report revealed that it was brain tumer and the biopsy done after surgery confirmed it as Anaplastic PXA. We were stunned. I had not even heard this term. There were no symptoms like fits, seizures etc. Sometimes I think whether I was late. Had I observed those early signs and took her to hospital a month ago things would have been different. Perhaps not.

Now we are doing what the doctors advice. Radio and Chemo are going on. What else can we do. We are positive and think that it will be cured completely. My wife also says confidently "I have to get well". 

ita227 said:

News for PXA with anaplastic features

Hello,

My 31 years old brother was diagnosed with PXA with anaplastic features 3.5 years ago. He had 2 operations back then with radiation and chemotherapy. we had over 2 years of just monitoring and 3 months ago the tumour came back. After a full resection my brother was treated with Temodal for 2 months, but the most recent MRI shows a regrowth, so he will need to go through another operation and also, need to think of another chemotherapy as the Temodal is not working.

On the bright side, he had a genetic analysis and found he has a mutation in a gene called BRAF V600E. this is a major discovery as there are studies showing a link between this gene and PXA. there are FDA approved drugs to counter the effect of this mutation, so now we just have to cross our fingers and hope this works.

I do believe the future lies with biological treatment and there are some giant leaps happening out there. Even though PXA is very rare and there are hardly any studies on it, it is linked to other gliomas where you do see progress.

Hope this helps.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017948

https://en.wikipedia.org/wiki/Carfilzomib

hello I read your post and i wanted to talk I am a mother of an 8 year old beautiful daughter Danica . She was diagnosed march 2017  after surgery with lol pieces left behind due to a dangerous spot. She ended up doing radiation for 6 weeks and a couple weeks after radiation she had 3 seizures and we were air lifted back to Oakland children's hospital. They did an MRI and it was bad news her tumor started to grow back! She is now on oral chemo called tafinlar which she takes at 6pm and 6am every day. We go back for MRI sept 20th and results the 22nd. I live in fear daily. this has by far been the hardest time of our lives.