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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

Oligogirl's picture
Oligogirl
Posts: 4
Joined: Mar 2004

Hello,I have heard of this tumor but don't know much about it I have a recurrent anaplastic astrocytoma but I do know of a good web site that you can go to and there it has lots& lots of info about all diffrent types of brain tumors it's www.virtualtrials.com I hope that helps a bit.

jessica1219
Posts: 3
Joined: Jan 2006

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
Posts: 1
Joined: Feb 2006

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.

cuzneddy
Posts: 3
Joined: Mar 2006

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
Posts: 3
Joined: Jan 2006

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

nmrussell
Posts: 1
Joined: Nov 2006

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.

cuzneddy
Posts: 3
Joined: Mar 2006

Hi my nephew has had two tumors removed that were PXA with anaplastic features. If you go to caringbridge.org and go to visit and type in specialk you can read all about the treatment etc he too had reacurrence despite radiation and chemo- temodal but he is on another chemo and his last MRI was clear. we would love to help you along this journey it has been over a year from diagnosis at 15yrs old
sincerely
Lisa

kkaramos
Posts: 5
Joined: Jun 2011

Hi,
I was just wondering how your son was doing. I hope things are going ok. My son was also diagnosed with a PXA but with anaplastic features in 2005. Please let me know how your son is doing.
Thanks so much,
Deb

nikki21
Posts: 1
Joined: Sep 2010

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
Posts: 5
Joined: Sep 2010

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!

immissi
Posts: 1
Joined: Sep 2010

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
Posts: 1
Joined: Sep 2010

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.

cuzneddy
Posts: 3
Joined: Mar 2006

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

lori6442
Posts: 1
Joined: Dec 2010

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

uli
Posts: 3
Joined: Dec 2012

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.

heidi2546
Posts: 1
Joined: Dec 2010

I am trying to get information on where to go where they know about this type of tumor. Is Mayo Clinic the best place. My brother was diagnosed with PXA in June 2010. It began to regrow just five months later and he now has two more lesions in his brain and two on his spine. Any info would be helpful

audra pxa
Posts: 5
Joined: Sep 2010

I have been seen at the Mayo Clinic in Rochester, MN for the past 10years. They see patients from all over the world. I have been very pleased with everything there. Like I said in a previous post here they have been ranked #1 in the nation for almost 20 years running. They have a great team that deals only with brain tumors. Any ???? please feel free to ask, you can check out my story at caringbridge.org site name: audra

Hoping the best for your brother.

akellyd
Posts: 2
Joined: Feb 2011

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

kkaramos
Posts: 5
Joined: Jun 2011

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
Posts: 25
Joined: Oct 2010

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

G.Mill
Posts: 2
Joined: Jun 2011

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?

huxley2006
Posts: 25
Joined: Oct 2010

Given the rarity there are no specific treatments for a PXA that I am aware of. Think treatment more or less follows the same guidelines as any tumor of a similar grade. Some of the more exotic treatments (Vaccine, etc.) would potentially be applicable. I recently qualified for a vaccine trial but turned out that the new enhancement was necrosis.

Read an article recently where gamma knife was utilized successfully in controlling a disseminated PXA for an extended period of time. May be worth checking on.

G.Mill
Posts: 2
Joined: Jun 2011

Thanks. I've been doing a lot of reading on the Gamma Knife. Really getting scared. Son is almost 19 and I really hoped something would have worked by now.

huxley2006
Posts: 25
Joined: Oct 2010

Sorry for your situation.

PXA (even the grade 3) due tend to be a bit less aggressive then some other types of brain tumors. Generally they are slow growing and less diffuse.
You should try your best to get your son to a major brain tumor institution. Care there is generally better then at local hospitals. Utilize Doctors you are comfortable talking to. Learn as much as you can about the aliment and all potential treatment options. Doctors tend to talk at you in broad generalities unless you engage them on an equal a footing (as possible). Second and third onions are a good thing. The more experts you talk to the more knowledgeable you become and the better able you are to make important decisions. Below are some sites I have utilized that have been very helpful.

http://www.virtualtrials.com/
http://www.cancercompass.com/
http://clinicaltrials.gov/

paulinna
Posts: 1
Joined: Jul 2011

Hello, I was diagnosed with this tumour in October 2006. It was situated in the right temporal lobe. I had a surgery and it was completely removed. Now I'm 21 years old and I'm fine.

cschade
Posts: 2
Joined: Dec 2011

My husband had ear pain beginning in March of 2009 which never got better after treatment. On an CT of his ear in September, they caught what they thought was swelling in his brain. After an MRI of the brain, he was sent immediately to the ER as he had a plum sized tumor in his left temporal lobe (now we know it was a PXA). He was in the ICU for a few days and had surgery the day after the initial findings. They said that the tumor was fully encased and that it had been removed in its entirety.

He had MRIs at 3-months post surgery, and then 6 months after that at 9 months post surgery. At that MRI they caught what they thought was a small bit of tumor that was missed. They did another MRI three months after that (a full year post surgery - 9/2010) and found that it was growing. They felt that removing the tumor would be too risky and began a very aggressive treatment of radiation (his hair still hasn't grown back after a year). At 9 months post radiation, just this past September of 2011, we finally saw that the tumor was beginning to shrink. We were elated.

A month later, he noticed that he was having a tremendous amount of pain in his belly and that he was having trouble bending over. After a CT of the intestines and then another MRI of the spine and brain, we found out that it had 'seeded' or drop metastasized into his spine and he has lesions all through the thoracic and lumbar portions of his spine, pushing on the nerves and blood vessels leading to his intestines (hence the extreme constipation and pain). He was put on dexamethasone immediately, and has been being treated with a more broad form of radiation therapy for the entire spine over the past few weeks and has three treatments to go. The hope is that the spinal tumor cells will react the same way as the brain tumor, and that after 9 months we will see them begin to shrink.

They never spoke of using chemotherapy drugs, even after the first tumor was found. They said that it was extremely slow growing (he was 29 when they found it.... much older than normal for a PXA), and that we shouldn't worry. Now, after the recurrence and the seeding, they are beginning to talk chemo. Avastin? They want to see how it goes, but I am not so sure. I guess after reading all of the posts, I am now worried about it moving elsewhere.

cschade
Posts: 2
Joined: Dec 2011

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.

Lil moe
Posts: 6
Joined: Apr 2012

My name is Kim and my son was diagnosed was a brain tumor on 3/20/12. Yesterday the comfor. That it is a PXA tumor I really don't know about this tumor. they don't recommend chemotherapy I don't know what to do.The tumor was the size of a golf ball in the back of the left side of his head. He did had surgery but there is still a part of the tumor left in. Please help You can call 530 632 7777 thank you

audra pxa
Posts: 5
Joined: Sep 2010

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.

Lil moe
Posts: 6
Joined: Apr 2012

So my son is having another surgery June 4 so tomorrow. The dr. Said there was still more. This is so hard because it's only two months. It would be nice if we could talk over the phone my number was on the last post 530 632 7777

uli
Posts: 3
Joined: Dec 2012

Hi, may I ask what chemo you recieved?

huxley2006
Posts: 25
Joined: Oct 2010

Hello Kim,

I am a 19 year survivor of PXA. Had initial diagnosis in 1994 and recurrence as anaplastic PXA or GBM (depending on the path) in 07/2010. I went through several surgeries, radiation and the temador regiment. So far doing well and leading a very normal existence. Your posting was a while ago so not going to provide treatment advice but if you need additional input feel free to reach out to me via this site.

Audra,

Hello to you as well. I reached out to you several months ago and based on your most recent caring bridge post things seems like things are going better for you.

Wayne

hj49
Posts: 4
Joined: May 2012

My son has Brain Tumor in Feb, 2005 at the age of 17 years.
History :
1. Brain Tumor in Left sub cortical parietal lobe detected in Oct. 2004
2. Surgical resection in Feb.2005 – It was Fibrillary Astrocytoma Grade - I.
3. Post operated MRI up to 12/04/2007, no recurrence seen.
4. Recurrence in March 2011 (after 6 years). 2nd Surgical resection on April, 9, 2011. Histopathology Report: a. Anaplastic Pleomorphic Xanthoastrocytoma (WHO Grade III) AND b. Progression to Glioblastoma (WHO Grade IV). The former possibility is favoured.
5. Tata Memorial Hospital, Mumbai, India has suggested Radiotherapy dose of 59.4 Gy./33 Tr. over 6-7 weeks and Chemotherapy with concomitant TMZ / Temozolomide @ 75 mg/m2.
6. Accordingly, Radiation & Chemo course was completed between 26/05/2011 to 08/07/201 in Apollo Hospitals. No adjuvant temozolomide.
7. He admitted in Apollo Hospital for K/c/o left FP SOL, Acute Gastritis and underwent symptomatic treatment on 09/11/2011.
8. There is no recurrence in MRI up to Dt. 28/04/2012.
9. Seizure in speech noticed on 11/08/2012.
10.MRI Dt. 11/08/2012 suggest TUMOR RECURRENCE (3rd time after 16 months from 2nd resection) at the age of 24 years.
Lesion measures: 12.9 x 7.6 mm in Axial plane, 9.3 x 12.5 mm in Coronal plane and 9.4 x 9.4 mm in Sagittal plane.

Pls. guide me for further treatment and survival rate for this type of case.
In all posts everybody is giving information up to survival of the patient but we should share complete details, their sufferings up to the death.

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

My son has a different type of brain tumor--an anaplastic oligodendroglioma (grade III) but I think some of the things we are experiencing may happen with other types of brain cancer. You can get an idea of what we are going through on the "Grief and Bereavement" board.
Blessings and peace to you,
Cindy in Salem, Oregon

adrianav's picture
adrianav
Posts: 9
Joined: Apr 2012

I started reading these posts back in 2009 when I was first diagnosed. I remember there were only a few and I would search frantically for more information on a PXA tumor. 3 years ago yesterday, my family found me having a seizure shortly after I had fallen asleep. The only symptoms that I recall prior to the seizure were headaches and fatigue. I was having difficulty waking up for class and I thought maybe I was just being lazy. I had no history of seizures and we had no idea what news we were about to receive. I was rushed to the hospital where they performed a CAT scan. Shortly after, a doctor came in to speak to me and he informed me that they found a lesion in my brain. I had a surgery the following week and I was told that I had "won the lottery" with the golf ball sized tumor I was diagnosed with. (PXA II) The surgeon told me the chances of the tumor coming back were almost none. I went on with my life, but they continued to order MRIs to monitor for any regrowth. I had an MRI of August 2011 and nothing was found. January of this year, I began having what I would describe as flashing lights in my vision and headaches all over again. I think I knew it was back but I had to put on a brave act for my family. I went in for another MRI and my neurologist never called me with results until a week later. He wanted me to go in ASAP to discuss the results. He told me the tumor was back and had almost filled up the cavity from before. I consulted with the prior neurosurgeon and he didn't seem to care or worry. He told me I could finish out the school semester and we would talk about surgery in May. I knew I needed a second opinion so I did some research and found MdAnderson in Houston. I flew in and met with Dr Conrad and Dr McCutcheon. They suggested surgery almost immediately but being from a town 9 hours away, I had to come back home and sort things out. So I went back a week later and had surgery. Dr Conrad told me I would need radiation because the tumor had grown back and no one expected it to. The tumor grade was changed to III and it was considered cancerous at this point. I completed 6 weeks of radiation and I'm going back to Houston this month to follow up. I hope this helped, I know it was a all over the place.

huxley2006
Posts: 25
Joined: Oct 2010

Adrian,

You story is very similar to my own with the exception of the timing. Mine was 17+ until recurrence. I am now 2 years plus since last resection. I think the prevailing wisdom right now is by in large they do come back (eventually) although not with the severity and speed of a standard malignant astrocytoma .

You can reach out if you have any questions.

Hux...

umcrn
Posts: 22
Joined: Jun 2012

My neurosurgeon said it would NEVER come back...but both my oncologists (medical & radiation), my pathologist & second opinion doctors from other hospitals have pretty much guaranteed it's return, we just don't know when. I'm coming up on my one year and I know my MRI's will start to get spaced out more which makes me nervous, especially since I have no idea how long it was growing previously before I started getting symptoms...guess I just have to really be paying attention to every little thing & try not to worry about it, can't waste my life away worrying

adrianav's picture
adrianav
Posts: 9
Joined: Apr 2012

When they told me it wouldn't grow back, I didn't really think much about it. Now, I'm constantly worrying even though I try to reassure myself that it won't grow quickly if at all. I didn't do any chemo because Dr. Conrad said it would not be effective. I hope radiation worked! Good luck
-adriana

adrianav's picture
adrianav
Posts: 9
Joined: Apr 2012

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

umcrn
Posts: 22
Joined: Jun 2012

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)

umcrn
Posts: 22
Joined: Jun 2012

flashing lights was one of my symptoms too! Where was your tumor?
Are you doing chemo as well or only radiation?
Hope your follow up went well!

huxley2006
Posts: 25
Joined: Oct 2010

Mine was on the surface of the Brain on the Occipital lobe.

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adrianav
Posts: 9
Joined: Apr 2012

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

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.

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adrianav
Posts: 9
Joined: Apr 2012

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
Posts: 6
Joined: Apr 2012

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
Posts: 22
Joined: Jun 2012

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!

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adrianav
Posts: 9
Joined: Apr 2012

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's picture
adrianav
Posts: 9
Joined: Apr 2012

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?

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

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