pxa

huxley2006 said:

PXA
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.

cschade said:

pxa recurrence
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.

Lil moe said:

PXA Tumor
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

cschade said:

update 4/2012
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 said:

PXA Tumor
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

adrianav said:

PXA
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.

adrianav said:

PXA
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.

umcrn said:

flashing lights was one of
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 said:

PXA
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...