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PXA tumors

sunshine123
Posts: 5
Joined: Jul 2010

Looking to hear from others who have been diagnosed with PXA tumors. My son was diagnosed at the age of 15 with a PXA Grade II, but then after a second opinion after his 2nd surgery, there were concerns for a possible higher grade neoplasm (Grade III). He had 6 weeks of radiation (tomotherapy) and chemo (temodar) which ended in August of 2008. He had MRI's every 3 months for a year after his treatment ended and then it went to 6 months (all his MRI's have been clear....yeah!!!) Anyone wishing to tell me of their medical journey would be greatly appreciated of those who are survivors of a PXA and those families who have lost their loved ones to PXA tumors. There is so little information out there on this type of tumor and as a mother of a son who is a survivor, my mission is to stay ahead of the battle and to know as much as I can about PXA tumors. Anyone interested in reading my son's medical journey may do so by entering the website caringbridge.org and enter tylerborchardt. And I have more of his story in detail on CSN. He is now 18 years-old and is looking forward to college.

Sunshine123

shodobe1
Posts: 1
Joined: Jan 2012

I had this tumor diagnosed and removed in March of 2009. It is a very rare tumor and especially rare for someone my age (I am now 54). It usually occurs in people a LOT younger. I was blessed to have an extraordinary surgeon by the name of Sunghoon Lee in Springfield Missouri. The tumor was the size of a golf ball and the surgery lasted over 8 hours. I came out of it with NO loss of any of my bodily or mental functions. I also had the Toma radiation (6 weeks as well) after surgery, but went to M.D. Anderson and talked to Doctor Conrad for second opinion. Chemo. was not recommended because of the brain/blood barrier and the difficulty of getting chemo. to the tumor.

I had a recurrence (new spot) about 8 or 9 months ago and was referred to Dr. Alan Scarrow in Springfield for Cyberknife treatment. (If you don't know about Cyberknife you should check it out.) I went through 10 treatments on the old spot and the new right before Thanksgiving. Went back a week ago for my follow-up M.R.I. and got the results today. There is no new growth and no change, so I am very happy. I have another follow-up M.R.I. in 3 months. So far, so good.

sunshine123
Posts: 5
Joined: Jul 2010

My understanding as well is that these PXA tumors are usually seen in younger patients. I have read that these are usually slow growing and a Grade 2. It sure seems that they need to do more research of these PXA-type tumors. I know a few people with PXA tumors that have shown more aggressive behavior and has leaned more toward Grade 3 (like my son).

Glad everything is going well with you. It's always good to hear from others how well they are doing after surgery and/or treatments. You do have something to celebrate! I bet in three months you'll be celebrating again! My son currently is having MRI's every six months, his next one is at the end of April and I believe his results will be STABLE....which is always something to be grateful for!

Sunshine

Whim_zee
Posts: 3
Joined: Apr 2019

My tumor pathology came back as dividing rapidly, so maybe mine is grade 3. It is golf ball sized as well. Or was. It is now growing in a petri dish :) 

Lil moe
Posts: 6
Joined: Apr 2012

My son is 9 years old and had surgery April 21,2012. The doctor told myself and my husband our son Had a PXA tumor. His tumor was the size of a golf ball too. I don't know very much on this tumor. They told me he will not need treatment. This was a surprise to us. I had thought my son was having seizure so that's why I took him to the E.R. In colusa California. His surgery was in the town of Sacramento California and his Pediatric Neurosurgery was Marike Zwienenberg-Lee.

hj49
Posts: 4
Joined: May 2012

I wish speedy recovery for your son. For information I wish to give details of my son.
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/sufferings up to the death.

Whim_zee
Posts: 3
Joined: Apr 2019

I am 20 years old. This past december, I went home from work sick. I took a nap and awoke on an ambulence. I had had a seizure (first one ever) in my sleep and my boyfriend had called 911. I was in the hospital for two days, an MRI revealed a mass in my right frontal lobe. It was originally thought to be calcifications from a head trauma. They put me on keppra. I had a follow up MRI that January. The mass had not grown (it was 3.5 cm), so they scheduled another MRI for march. The MRI ordered was a profusion MRI to view the blood vessels around the tumor. This MRI was to determine whether or not I needed surgery. On 22 march (two months from the January one), I had the MRI and on the 29th I was told the tumor had grown and was now showing heat on the MRI and demanding blood from my brain. They had not expected this at all, and wanted to do surgery within the next two weeks. I had surgery on April 11th. The pathology came back as a rapidly dividing PXA tumor. i am unsure of the grade. I am in the military, and the closest surgeon reccomends I go home to New England to see an oncologist due to the rarity of the tumor. The hospital sent my tumor tissue away to be grown in a lab. Still unsure if what is left in my brain is benign. 

 

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