Oligodendroglioma III Recurrence After 13 Years

My 28 year old son is battling a recurrence. He was diagnosed at age 26 in May of 2009 with an anaplastic (grade 3) oligodendroglioma. He had a total resection (of visible tumor), radiation, and two years of Temodar. It came back in July of this year, and it's been a rough road ever since.

Everyone's experience is different, and my son had some negative variables that I believe really impacted his situation. For one, he does not have the gene deletions that most doctors say will predispose an oligodendroglioma to be more sensitive to chemo. Also, our insurance company gave us a nightmare time--really put us through hell--running us around and refusing to authorize an experimental chemo delivery treatment protocol (a phase 2 clinical trial), so we went to NIH and participated in a different trial with them. It didn't work. In the meantime, my son's tumor grew unchecked. Finally we received authorization for the phase two clinical trial treatment, but by then, the tumor had really progressed and the chemo treatment was too much for my son. He had a lot of edema in his brain and between the swelling and the mass effect of the tumor, he did not have any extra space in his brain/skull to tolerate very much swelling. The treatment almost killed him.

So we are home now, and my son is recovering from the clinical trial treatment. In a month, we will go back and get more chemo, given intra-arterially, which is supposed to amplify the effect of the chemo by 10X. The doctors said that this should not cause the same amount of swelling. I am very concerned about how much tumor growth is going on while we wait, but we don't have a choice. David has to recover and we have to continue on a steroid regime until the swelling goes down before we can do more chemo.

On the plus side, it's really amazing how bad David was after this chemo treatment, and how much he has improved. The brain is a pretty resilient organ in some ways...extremely delicate in other ways.

I think our experience is rather unique, but everyone's situation and case history is also different, based on their individual makeup and their overall health. What doesn't work for one person may very well work for another. But I thought I'd share my story, just for your information.

Our doctors told us that they have this opinion: the longer your body holds off a recurrence, the better. It shows that your body is able to fight off cancer cells and has a measure of resistance. I am so deeply sorry that your brother has had a recurrence, but please take hope and keep fighting--I know you will! This battle is terribly hard, but some people are able to beat cancer. Praying that your brother is one of them!!!

Love and blessings,
Cindy in Salem, OR

So sorry to hear that your
So sorry to hear that your brother had had a recurrence. I have been posting to this site since last April (2011), when our 34 year old son was diagnosed with a grade 3 Anaplastic Astrocytoma.

This is the second time my son has had a brain tumor diagnosis. The first was when he was 8 (in 1985). It was a medulloblastoma, the most common type of pediatric brain tumor. The surgeon removed it all, and then David had whole brain radiation and a year of CCNU/vincristine/prednisone. At the time, he was given a 20 percent chance of surviving 5 years.

Although he has had to deal with some serious long-term effects of treatment...growth hormone deficiency (his adult height is 4'9"), hypo-pituitary, learning disability, and type 1 diabetes, he lived a good life for 26 years, living independently in Washington DC where he worked a good government job (he was working in the Pentagon on Sept. 11, 2001).

We are told that this second bout of brain cancer is technically NOT a recurrence...it is a second, primary brain tumor, a result of the radiation he had 26 years ago.
This time, the surgeon was able to remove only enough tissue to relieve some of the pressure and get a biopsy, as it had already formed tentacles elsewhere in the brain.

On one hand, if I could do it over again, I would not have approved his having whole-brain radiation when he was 8. But his current NO said that without it, he wouldn't be here today...that despite the high risk of causing a secondary cancer, it was, and still is, the best tool they have right now to fight brain tumors.

This time around, his odds are even worse. In fact, the docs have said that treatment won't make it go away. After his biopsy in April, underwent 4 weeks of radiation (only to the tumor bed site. It was a reduced dose as well because the radiation oncologist felt that his brain could not take the normal dose..too great a risk of radiation necrosis). He also took Temodar while on radiation, and then completed 4 cycles of the 5/28 day Temodar regimen. But the latest MRI showed another new tumor, so tonight he takes his first dose of CCNU, followed in a week with 14 days of procarbazine.

This time around, he has developed some serious deficits, including balance and speech.

Did your brother have cranial radiation when he was first diagnosed?

Please keep in touch and let us know how your brother is doing. We are all in this together.