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MRI shows new tumor, changing chemo regimen

connsteele
Posts: 232
Joined: May 2011

Well, our son David (age 34, dx 4-13-11, inoperable AA3) had his MRI last Thursday. This comes after David had completed round 4 of the 5/28 Temodar cycle. The results were not what we had hoped. Dr. C first started out saying right out, there's a new tumor showing up on the scan. It's an elongated shape, just to left of the original one, which has remained the same, not bigger or smaller. He also said there was something on the scan higher up, but it wasn't definitive, could be a holdover from radiation. But, the doc said he's not concerned about that now, he wants to address this new lesion.
So, he is changing David's chemo regimen. He is putting him on CCNU and Procarbezine. What's surprising is that the CCNU, which he takes one pill in a six-week cycle, is one of the drugs that he took when he was diagnosed at age 8 with a Medulloblastoma. Dr. C said that research now is starting to take another look at some of these older drugs that have been around for treating brain tumors, that they are more tried and proven and just as effective as the newer ones.

This says to me one of two things: either there really hasn't been much advancement in developing new, more effective drugs for treating brain tumors, or that Dr. C is thinking there is really nothing else to offer him.

We did talk about his starting Avastin, but he said he wants to hold off on that, "keep it in the back pocket" to pull out when needed (note that he said WHEN, not IF).

On the other hand, David did live free of brain cancer for 26 years, although not without dealing with some serious long-term effects of having whole-brain radiation at age 8. So, maybe the CCNU can work again?

I think Dr. C is handling David's case with "kid gloves" as when he was on radiation/Temodar, David's neutrophils dropped to critical lows and they were freaking out about that. Right from the start, the docs he first had in Virginia, where he was diagnosed in April and had the surgical biopsy and radiation, said that any treatment wouldn't make his cancer go away, just slow things down.

Clinically, David seems better. He's getting around now with a cane, rather than a walker, and he's more engaged in things he liked to do, like working on his computer and playing video games. So, this new finding is puzzling, and not the least, frightening.

Just wondering, is anyone else been put on CCNU and Procarbezine? How did it go?

Raani01
Posts: 70
Joined: Mar 2011

Connsteele,
Myhusband has Grade 3 glioma too. He is 52 years old.We found his tumor at grade 1 level and it tuned to level 3 in 2008. he has been on Temodar on and off until this March 2011 when the tumor becomes resisitent to temodar and saw tumor growth in MRI. Avastin was the next suggested chemo,but my husband couldn't use it because they found some bleeding from the cells (you know, bleeding is the main side effect of Avastin!). His oncologist kind of lost hope and we went to Mayo clinic in Rochester, MN. There they suggested to try CCNU which our local doctor said would n't work. my husband has been on CCNU until this November and the tumor was stable.Then, in Novemver we saw tumor is acting up again telling us CCNU won't work any more (we were told there are only 6 cycles of CCNU we can give and my husband already got 5 cycles).To answer your question, he had no problem using CCNU.
As a side note, We just got home from surgery in Mayo for removing the cyst formed from the blood/fluid accumulation. My husband is recovering quite well.
Avastin is our next step, hoping the surgery resolved the bleeding issue.

Take Care!
Raani

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