glioblastoma multiforme... with Temozolomide

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glioblastoma multiforme... with Temozolomide

by bga16 on Sun May 25, 2014 09:27 AM

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 Hello everryone,

My father ( age: 60) operated for low grade glioma 4 years ago. Biopsy results after surgery confirmed glioblastoma multiforme. Undergone RT and chemo immediately after that for 1.5 yr.  After that he had not RT and NO chemo for 1.5 yr , but during that time, right side of his body was weak all the time, but he was able to do his day to day work with help of my mom.

Last one year, right side of his body has become even more weak. MRI reports says," possibility of post radition necrosis is more likely than recurrance. no definate mass effect noted". After seeing the report the oncologist said that there is swelling in the brain and has precribed to undergo temozolomide cycle. This week he is due for 4th dose of 2nd cycle. ( 1 dose = 5 tab/5day, 1 cycle =5 dose/5 month). 

Till now he has completed 8 doses, but still no sign of improvement, which concerns me very much. I will ver much appreciate if someone can answer my queries.

Queries:

1. Is temozolomide for treating inflammation in the brain, or is it for treating cancer?

2. The report says that is not likely to be recurrance, then why has he started temozolomide again after no chemo period of 1.5 yrs?

3. Is it possible that temozolomide may be causing inflammation rather than treating it?

RE: glioblastoma multiforme... with Temozolomide

by jon4156 on Sun May 25, 2014 04:54 PM

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Temodar is used to fight cancer cells.  It wouldn't make sense to use it for necrosis since those cells are already dead.  I cannot find any evidence that Temodar is used to treat inflammation or that it causes inflammation.

RE: glioblastoma multiforme... with Temozolomide

by bga16 on Sun May 25, 2014 04:59 PM

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On May 25, 2014 4:54 PM jon4156 wrote:

Temodar is used to fight cancer cells.  It wouldn't make sense to use it for necrosis since those cells are already dead.  I cannot find any evidence that Temodar is used to treat inflammation or that it causes inflammation.

Thank you for your reply....

Do you know, what might be the cause of the inflammation in the brain? and what is the correct course of treatment generally prescribed for this kind of brain inflammation?

RE: glioblastoma multiforme... with Temozolomide

by jon4156 on Mon May 26, 2014 02:08 PM

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Steroids are usually used to control inflammation of the brain.

RE: glioblastoma multiforme... with Temozolomide

by johngiustino on Wed May 28, 2014 01:17 AM

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oulAre you working with a neuro-oncologist NO)? Is it possible you heard something incorrectly?  Steroids are definitly used for inflammation not Temador.  Insist that things be explained to you very specifically.  Ask them "Are you prescribing Temador for inflammation"  Swelling can be very serious and you need to make sure the right thing is being done.  If you are not satisfied seek a second opinion.  Sometimes you can just send your MRI to a NO for phone consultation.  Most optimal is to take your MRI and seek an opinion on the strategy that is being used.

Here is the production information sheet written by Merck who makes the drug.  It is a bit complicated in parts by I do not see it saying it can be used for the treating swelling.  Print it out and take it to your doctor.  Ask where it says Temador can be used to treat swelling.

http://www.merck.com/product/usa/pi_circulars/t/temodar_caps

All of this may sound a bit aggressive, but sometimes you have to be.  When I was first diagnosed I was treated by a caring oncologist.  At some point though it became clear that she ran out of answers for my questions.  To her defense she got an opinion from whom is now my current doctor.  I politely asked her why she did not have the answers.  She said that what I had was very rare and that is why she had to consult a more specialized oncologist (now my doctor).  At least she know when she reached her limit. The point is that sometimes doctors have limits and it is important to recognize them and take action if necessary.  The questions you are answering here should be answered by your doctor.

Best of luck,

JG

RE: glioblastoma multiforme... with Temozolomide

by tonysprincess on Wed May 28, 2014 04:58 AM

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my bf (glio age 57) was on temador but the tumors grew.  they took him off that and he has been on Avastin since may of 2013...so far, so good.

best of luck to your dad...he is in my prayers

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