pxa

hi. i hope everything is going ok with your husband. i was told i had pilocytic, then the diagnosis changed to pxa. i had other pathology look at it & they said it was aa. so i finally went somewhere to explain it. they said i had pxa and aa mixed. i've gotten the treatment for the aa, just to be sure. i've had surgery, they said they got it all. i had 6 weeks of radiation & i'm still on temodar until august. all of my scans have been clear.
i haven't found anyone with pxa until now.

EileenV said:

Hi, My name is Eileen I am 18 years old and I have and am expierancing PXA. In 2002, I was a sophmore in high school and I was experiencing seizures but I did not realize they were seizures and I was scared so I did not tell anybody about it only friends from school knew because of seeing it happen, they were like black outs. Finally, in February of 2002 during a class presentation I had a seizure and I ended up going to Children's Hospital in Boston where they asked to do an EEG exam and said that I just had abnormality in the brain. So, I was then sent to a specialist for seizure medication at the same hopsital and she saw my seizure occur and said it would be best if I got an MRI done. So the day before my birthday, February 9th of 2002, after the MRI the speicialist and a brain surgeon told me mother and father and I to enter a room and they told us then that I had "a tumour the size of a lemon on my left temporal lobe" they said I had to go in for surgery immedicatly or else I could die. They let me celebrate my birthday, but the following day Febraury 11th of 2002, I went to Children's Hospital and got the surgery. They told me I was going to be ok after surgery but that was not the case. Three months after my surgery I got another MRI, and the doctor who did the surgery said he forgot to take out a small other piece.So, in July of 2002 I went in for surgery again but it was really risky I did it with a MRI machine surgery that they have at Brigham and Women's Hospital in Boston. The doctor than said I was fine and I would no longer have to worry. Once again they were wrong, 3 months after my second surgery in Septeber of 2002 the doctors did an MRI and said my tumour came back and surgery was no longer a good option. Then they said they would like at attack the tumour with 6 weeks of radiation and 3 years of tamador, which is the same medication your husband is taking. The radation really weakened me and I lost hair on the side of my tumour but not all of it. Then just in January of this month I stopped taking temador which I have been taking since 2002. The medication did make me nausious and I have had MRI's every 3 months of my life since the diagnonsis and one time during chemo they saw some regrowth but now the doctors said I have been the longest patient on that medication from Dana-Farbers Cancer Institute and they told me it was not safe because I could have a chance of getting leukimia from taking that medication so long. I did get sick a few times and had to stay in the hospital because of fevers and the chinggles that I got, but my blood has been perfectly fine through the entire 3-4 years. My following MRI is in March of 2006 and every 3 months after that the doctors will be checking up on me to see if there is any more re-growth. Doctor's told me I was special because I have had one of the most serious problems they had seen with PXA. Now, its a matter of waiting and praying. I hope your husband is doing ok, my prayers are with him and the family. PS - I know alot of information about PXA- Pleormorphic Xanthroastrocytoma- so if you would like to ask me questions feel free even though I am only 18 I have experiences and researched alot for my own health.

Dear Eileen,
My 15 year old nephew had a pleomorphic xanthoastrocytoma with anaplastic features-graded a stage 3, removed Oct 28 2005. He had six weeks of radiation and had Temodol during the six weeks. He started a maintanence dose of 5 days on and 23 off. The last MRI showed two spots that the surgeon wants to go in and remove. We would love to hear from you, there isn't much information on this tumor or survivors and my sister inlaw is scared to death. He is doing fairly well battling nausea and wt loss.
Please reply!
Lisa

jessica1219 said:

hi. i would love to hear more about ur experiences w/pxa. i wrote on the acs webboard & seen ur post.
i'm 25 & was diagnosed w/pxa last year. i've had surgery, radiation & still on chemo. my diagnosis has changed from pilcytic to Pxa to AA then to pxa & AA. so it's mixed a little i guess. well email me if you would like to. jessica1219@mail2love.com

hi. my son experienced seizure 07/06 and had surgury to remove tumor next day. was diagnosed pxa. we celebrated his 27th birthday in hospital. he experienced another seizure 11/06. MRI shows more swelling indicating reoccurance. we are waiting for appt. with Dr. in Seattle. just spoke with original surgeon and oncologist 2 days ago. we were told to expect radiation. stressful time as my son is expecting his first child any day now. so glad to hear about others experiences.

EileenV said:

Hi, My name is Eileen I am 18 years old and I have and am expierancing PXA. In 2002, I was a sophmore in high school and I was experiencing seizures but I did not realize they were seizures and I was scared so I did not tell anybody about it only friends from school knew because of seeing it happen, they were like black outs. Finally, in February of 2002 during a class presentation I had a seizure and I ended up going to Children's Hospital in Boston where they asked to do an EEG exam and said that I just had abnormality in the brain. So, I was then sent to a specialist for seizure medication at the same hopsital and she saw my seizure occur and said it would be best if I got an MRI done. So the day before my birthday, February 9th of 2002, after the MRI the speicialist and a brain surgeon told me mother and father and I to enter a room and they told us then that I had "a tumour the size of a lemon on my left temporal lobe" they said I had to go in for surgery immedicatly or else I could die. They let me celebrate my birthday, but the following day Febraury 11th of 2002, I went to Children's Hospital and got the surgery. They told me I was going to be ok after surgery but that was not the case. Three months after my surgery I got another MRI, and the doctor who did the surgery said he forgot to take out a small other piece.So, in July of 2002 I went in for surgery again but it was really risky I did it with a MRI machine surgery that they have at Brigham and Women's Hospital in Boston. The doctor than said I was fine and I would no longer have to worry. Once again they were wrong, 3 months after my second surgery in Septeber of 2002 the doctors did an MRI and said my tumour came back and surgery was no longer a good option. Then they said they would like at attack the tumour with 6 weeks of radiation and 3 years of tamador, which is the same medication your husband is taking. The radation really weakened me and I lost hair on the side of my tumour but not all of it. Then just in January of this month I stopped taking temador which I have been taking since 2002. The medication did make me nausious and I have had MRI's every 3 months of my life since the diagnonsis and one time during chemo they saw some regrowth but now the doctors said I have been the longest patient on that medication from Dana-Farbers Cancer Institute and they told me it was not safe because I could have a chance of getting leukimia from taking that medication so long. I did get sick a few times and had to stay in the hospital because of fevers and the chinggles that I got, but my blood has been perfectly fine through the entire 3-4 years. My following MRI is in March of 2006 and every 3 months after that the doctors will be checking up on me to see if there is any more re-growth. Doctor's told me I was special because I have had one of the most serious problems they had seen with PXA. Now, its a matter of waiting and praying. I hope your husband is doing ok, my prayers are with him and the family. PS - I know alot of information about PXA- Pleormorphic Xanthroastrocytoma- so if you would like to ask me questions feel free even though I am only 18 I have experiences and researched alot for my own health.

PXA Diagnosis
My daughter, Cassidy (age 15), was diagnosed with PXA in May 2007. She had previously had a brain tumor resected in 2000 & they said she was clear and needed only follow up scans. She had a seizure on 4/13/07. I took her to the ER, they did an MR & sent us to the University of Chicago Hosp saying the tumor had returned. A subsuquent brain biopsy revealed the diagnosis of PXA. It is diffuse throughout her brain & spinal cord. It is inoperable. They feel she is too young for radiation so she was on IV chemo x 18 months then has been on Temodar since January 2009. Her last MR was 9/3/10. It is stable. I guess I am writing because it is so infrequent to hear about others with PXA. I have read case studies & such, but never found an actual person with the diagnosis until now. We have had her records sent here, there and everywhere hoping to find someone familiar with the diagnosis & maybe a surgeon who is skilled enough to remove it. Would love know how you are doing & who your doctor is...Cassidy is quite shy, but I wish she had the opportunity to talk to you. I know it must be hard to be so young, as you and she are, and be facing such a challenge. Would be open to hearing from anyone with PXA and their stories of diagnosis, treatment & survival.

audra pxa said:

PXA Survivor
So, so sorry to hear about your daughters recurrence. I know personally how difficult it is to connect with others with a PXA because there are so few of us and I know how desperate we are to have more knowledge on this tumor. I am being followed at the Mayo Clinic in Rochester, MN and my neuro-oncologist, Dr Buckner, says he only gets a new case with PXA diagnosis about 1 every 2-3 years. If you are looking for a place to go, I wouldn't hesitate to get on a plane and go to Mayo. They are GREAT!! They have been #1 in the nation for neurosurgery and neurosciences for the past 19 years. You don't even have to be referred, but it helps to get in quicker if you are. My surgeon there was Dr Marsh and he came HIGHLY recommended...even the nurses said I was lucky to have him.

I was origianally diagnosed with an oligodendroglioma in 2001 with complete surgical resection. Recurrence in 02/2007 with partial surgical resection, re-classifed as a PXA(they feel original diagnosis was incorrect) followed by 6wks radiation. Recurrence in 02/2009, placed on Temodar and tumor continued to grow. Complete surgical resection 05/2009 followed by CCNU. The CCNU caused me to have some lung complications and we needed to stop that after 3 treatments. Currently being followed every 3 months with MRI's. I have a caring bridge website you are welcome to check-out, site name is: audra
I also know a few others with PXA's that I have kept in contact with and would be glad to share their stories with you too. Here to help you in anyway I can!

PXA recurrence - Tumor has changed to grade 4 Glioma
Hi, not sure what to say...I'm looking for any information or updates from anyone that has had PXA and had a recurrence that changed from beniegn (sp?) to malignant grade 4 glioma.

My niece was diagnosed with PXA in 2004 when she was a 17 yr old senior in high school. They sucessfully removed the tumor (completely round in shape) and felt they had removed it all. They indicate that she would need MRI's every 5 yrs because the tumor would most likely grow back but that it was a slow growing tumor, it could take anywhere from 5-15 years to grow back.

In July 2010, Jazmine began having seizers again and after an MRI, we found out the tumor was back (only 4 yrs) and it was 4.7cm already. They removed the tumor again and sent it off...it came back malignant and very aggressive. She has started radiation and is half way through with 15 treatments under her belt. She's also started her chemo (Temodar pill form) but they have changed their mind twice as to how long she will take the Temodar, 7 weeks to now 1 year. After reading some of your posts...it appears that some take the Temodar for several years...? Since the initial diagnoses didn't involve any radiation or chemo, I'm curious...has anyone experience PXA recurre & change from beign to very aggressive and if so, can anyone tell us what to expect? Is there a life expectancy that we need to prepare for...?

cdavis0609 said:

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.

you daughter
My nephew has had this tumour you can read his full story on caring bridge, in visit type in special K. He had complete resection with 6 wks chemo & radiation. He was on temodal but had it changed due to recurrance, it was CCNU, Vincristine and something else I can't remember. He is almost 5 yrs from diagnosis
Hope this helps

cdavis0609 said:

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.

I know it's been several
I know it's been several months since you posted your concerns regarding your daughter, but in case you were still looking for some info, I thought I'd post anyway. My daughter, 25, also has a PXA. I was most drawn to your description of her vomiting and sounding like she's under water. Have her doctors check her brain for high pressures? This can be done with a spinal tap. My daughter would get those symptoms along with severe head pain and vision changes. She was found to have fluid build up on her brain. This was caused by the PXA releasing protein into her cerebral spinal fluid, gunking it up and not allowing it to flow properly. She had a shunt placed in her brain and this corrected the problem. I hope things are going better today for her.

Lori

nikki21 said:

PXA Diagnosis
My daughter, Cassidy (age 15), was diagnosed with PXA in May 2007. She had previously had a brain tumor resected in 2000 & they said she was clear and needed only follow up scans. She had a seizure on 4/13/07. I took her to the ER, they did an MR & sent us to the University of Chicago Hosp saying the tumor had returned. A subsuquent brain biopsy revealed the diagnosis of PXA. It is diffuse throughout her brain & spinal cord. It is inoperable. They feel she is too young for radiation so she was on IV chemo x 18 months then has been on Temodar since January 2009. Her last MR was 9/3/10. It is stable. I guess I am writing because it is so infrequent to hear about others with PXA. I have read case studies & such, but never found an actual person with the diagnosis until now. We have had her records sent here, there and everywhere hoping to find someone familiar with the diagnosis & maybe a surgeon who is skilled enough to remove it. Would love know how you are doing & who your doctor is...Cassidy is quite shy, but I wish she had the opportunity to talk to you. I know it must be hard to be so young, as you and she are, and be facing such a challenge. Would be open to hearing from anyone with PXA and their stories of diagnosis, treatment & survival.

PXA
I don't know if you can call my story 'lucky' but after reading about your daughter all I can say is that I was rather lucky in my own recovery- or thus so far.
I had severe migraines for the last year before it was finally discovered I had a brain tumor, I was 22 and an active healthy (besides the migraines) female. Because I had had a few migraines in my early teens it was assumed that they were related and I was put on a series of drugs to prevent and stop migraines, I was even given a prescription for demeral (sp?) injections for the pain, along with a take-hope prescription of percocet. After months of trying to manage the migraines I was admitted into the ER barely conscious and unable to make coherent statements (ie all I could do was curse and say 'no') and with no feeling on the right side of my body. The cyst and tumor were in my parietal lobe, and the swelling was so severe it was impacting my ability to even breath on my own or control my body temperature, I spiked a fever upon being admitted to the ER and my EKG was so off kilter they were convinced I was having a stroke. They quickly did a CT scan and saw the mass in my brain and started treating me with Dexamethasone (sp?) to control the swelling. It was a miracle! After my two hour transport to Kaiser Redwood City in California I felt like whole new person, except I couldn't remember anything that had happened recently, they had to re-inform me that I had a brain tumor and going through the neurological tests I couldn't remember who was president, what year it was, or count backwards from 10. I was told they had 5 days to get the swelling down before performing surgery or it would be too dangerous, and the evening of the 5th day I was in surgery under the careful and skilled hands of Dr. Victor Tse. They removed everything they could and inserted a drain for the cyst (yuck!) when they got the results back from pathology I was diagnosed with a PXA, only the second my surgeon had ever seen. Recovery stunk, after they drained the cyst I felt like I had a ping pong ball for a brain and every movement sent the room spinning and was incredibly painful. The only remaining side effects I have from the surgery is a numb right hand and foot, which was because of where it was located and what it damaged. I had surgery 6/2/2009 and still go back for MRI's every 3 months. However, I have searched and searched and haven't found much information of the recurrence of PXA's until now. My neuro oncologist seems to think I have a pretty positive recovery but the chance I will have to have a second surgery in five to ten years is a medium risk. I think what has helped me the most in my recovery is keeping a positive outlook (I will admit, when I found out they had to shave a chunk of my hair I cried, a lot) and trying to keep my life as normal as possible. I was an avid equestrian before my diagnosis and once I got cleared to ride again I jumped right in with both feet. I immersed myself in all the things I wished I had done when I was sitting in a hospital bed, including going back to college and moving to a different state.
Best of luck to your daughter in her recovery process, and I hope she keeps getting clean scans!

Lexi

EileenV said:

Hi, My name is Eileen I am 18 years old and I have and am expierancing PXA. In 2002, I was a sophmore in high school and I was experiencing seizures but I did not realize they were seizures and I was scared so I did not tell anybody about it only friends from school knew because of seeing it happen, they were like black outs. Finally, in February of 2002 during a class presentation I had a seizure and I ended up going to Children's Hospital in Boston where they asked to do an EEG exam and said that I just had abnormality in the brain. So, I was then sent to a specialist for seizure medication at the same hopsital and she saw my seizure occur and said it would be best if I got an MRI done. So the day before my birthday, February 9th of 2002, after the MRI the speicialist and a brain surgeon told me mother and father and I to enter a room and they told us then that I had "a tumour the size of a lemon on my left temporal lobe" they said I had to go in for surgery immedicatly or else I could die. They let me celebrate my birthday, but the following day Febraury 11th of 2002, I went to Children's Hospital and got the surgery. They told me I was going to be ok after surgery but that was not the case. Three months after my surgery I got another MRI, and the doctor who did the surgery said he forgot to take out a small other piece.So, in July of 2002 I went in for surgery again but it was really risky I did it with a MRI machine surgery that they have at Brigham and Women's Hospital in Boston. The doctor than said I was fine and I would no longer have to worry. Once again they were wrong, 3 months after my second surgery in Septeber of 2002 the doctors did an MRI and said my tumour came back and surgery was no longer a good option. Then they said they would like at attack the tumour with 6 weeks of radiation and 3 years of tamador, which is the same medication your husband is taking. The radation really weakened me and I lost hair on the side of my tumour but not all of it. Then just in January of this month I stopped taking temador which I have been taking since 2002. The medication did make me nausious and I have had MRI's every 3 months of my life since the diagnonsis and one time during chemo they saw some regrowth but now the doctors said I have been the longest patient on that medication from Dana-Farbers Cancer Institute and they told me it was not safe because I could have a chance of getting leukimia from taking that medication so long. I did get sick a few times and had to stay in the hospital because of fevers and the chinggles that I got, but my blood has been perfectly fine through the entire 3-4 years. My following MRI is in March of 2006 and every 3 months after that the doctors will be checking up on me to see if there is any more re-growth. Doctor's told me I was special because I have had one of the most serious problems they had seen with PXA. Now, its a matter of waiting and praying. I hope your husband is doing ok, my prayers are with him and the family. PS - I know alot of information about PXA- Pleormorphic Xanthroastrocytoma- so if you would like to ask me questions feel free even though I am only 18 I have experiences and researched alot for my own health.

My son with PXA
Hi Eileen
I think I have been incontact with you before but I lost EVERYTHING on my computer and years later now I'm trying to find people who I've lost.
My son Kyle Karamos was diag.in Oct 2005 with Pxa with anaplastic features. He is doing well today June 1 2011. I was just wondering how you are doing and if you can contact me. I would really appreciate it.
Thanks so much Eileen,
Deb Burgess

huxley2006 said:

PXA with Anaplastic Features
I am a 17 year survivor of Grade 3 PXA. Initial diagnosed in Jul 1994 with a reoccurrence in July 2010. Reoccurrence was Almost 16 years to the day. I have been through multiple surgeries, radiation and Temador. Thus far feeling 100% (working, driving, exercising) and MRI scans have been relatively clean. I would be very interested in communicating with anyone with a similar diagnosis.

Thanks

18 year old son being treated at St. Judes.
Are there any new treatments in the pipeline for this type of tumor? My son has battled this for almost ten years. First tumor was resected. Then, almost 7 years later, they found one in a ventricle and one in his spine. In the past 4 years, we have done temozolomide, radiation, avastin/carboplatin(for only a couple months-did not tolarate it well), and now another one. Is there not anything new that will target this type of tumor?