cpt11, carboplatin and avastin

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cpt11, carboplatin and avastin

by Debralynn on Tue Jul 07, 2009 12:00 AM

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I have been on this site almost daily since my husband was diagnosed with his tumor in August 08.  My heart hurts for all of us having to go through this...it is so hard.  My husband has been being treated for a recurrence in March with Avastin, daily Temodar and for 3 months was on CPT11 too (until May)  The two spots that had shown up around the tumor bed went away, but in the past month his seizures have slowly increased and today we found that the spots are trying to return and that he also has some increased T2 and Flair signal indicating most likely low-grade tumor growth.  Today we are hitting it with alot.  He is doing Avastin, CPT11 and Carboplatin.   We will stop the daily Temodar since it seems to not be doing the job.  When he was doing the CPT11 before it knocked him on his butt for several days.  Adding the Carbo has me concerned.  Any advice from those that have done both?  Also,  anyone out there that has done this combination or even just the CPT11 and Carbo and had good results?  I know everyone is different..but we are always looking for encouraging stories!  I read them every chance I get! 

I wish that there was no one else having to go through this horrible disease, but as weird as it sounds, I find comfort in knowing that there are others who know the road we are on and understand.

Blessings,

Debbie

RE: cpt11, carboplatin and avastin

by madonnav on Tue Jul 07, 2009 12:00 AM

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Debbie;

We found out yesterday that Rob's left parietal tumor is growing and that there is a new one near by.  He had 30 days rad and temador in February and I thought that would be it.  Now the radiologist and NO are saying they want to use 10 days of stereotactic radiation- stronger and more pin pointed that the other type- on the area that is growing and on the new spot.  They said the prior radiation worked on the 2 other sites and that the growing site didn't get a lot of rad. before so they feel he may respond to this.  Also staying on temador 5 days of 28 at 300 mg. but adding the Avastin every 2 weeks.  They are discussing it at the tumor board Weds. and will let us know what comes first the rad. or avastin.  I asked about the CPT11 and the NO said he was not using it but would use the CCNU?? but not now.  They are all different I guess.  I am thinking of sending all the info. to Duke.  currently at Jefferson in Phila.  Never know what to do this is so difficult.  Hope whatever he is on works.  Keep me informed.  Thoughts and prayers.

Donna wife of Rob dx 12/08 multifocal GBM4

RE: cpt11, carboplatin and avastin

by KB1263 on Fri Jul 10, 2009 12:00 AM

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Debbie,

I read your post and share a similar situation.  My husband dx 8/07 with grad 4 GBM was on conventional treatment.....then temodar with CPT-11/Avastin for the first year post diagnosis.  PET scan came back clear, so he took a break for a month from meds. other than Avastin.  We just couldn't abandon meds all together.  The following MRI showed thickening around the tumor bed, so the beast was trying to return.  The docs then put us on Carbo, CPT-11/Avastin.  They replaced the Temodar with Carbo.  It's definitely stronger and my husband has tolerated all treatment well.  He attends all our teenagers events, mows the yard, helps out around the house with light cleaning (he's a man, of course), etc.  However, since being on carbo, he gets so tired very easily.  His energy level has definitely decreased.  He does go back to bed occasionally right after treatment.  The afternoons are especially difficult.  It just hits him w/o warning.  I keep notes on his behavior and how he feels so I can check for pattern changes, but this regimen is so unpredictable.  After  mos. of doing this, I can see he's tolerating it pretty well, but not nearly as good as when he was on Temodar instead of Carbo.  I guess its just the strength difference.  Please private reply me if you have any other questions or concerns.  I'm happy to share our experiences and information.

KB1263

RE: cpt11, carboplatin and avastin

by Beastfighter on Tue Apr 22, 2014 11:23 AM

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My husband has g4 GBM . They can not operate on him he has seven tumors . Does anyone know anyone who has lived longer then 16 months with this beast . Also he is only sleeping only three hours a night even with his sleep meds.. Any suggestions .

RE: cpt11, carboplatin and avastin

by bill1958 on Wed Apr 23, 2014 03:32 AM

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On Apr 22, 2014 11:23 AM Beastfighter wrote:

My husband has g4 GBM . They can not operate on him he has seven tumors . Does anyone know anyone who has lived longer then 16 months with this beast . Also he is only sleeping only three hours a night even with his sleep meds.. Any suggestions .

My wife just marked her 30th month since dx of GBM Mulitiform.  She had recurrence last fall and has been on Avastin/Ironitecan every two weeks since early January.  She has tolerated it well.  Her first MRI showed some shrinkage and she has another in early May.  Because her tumor is in the left parietal area (in the speech center) they cannot operate and she already had as much radiation as is allowable. 

RE: cpt11, carboplatin and avastin

by Beastfighter on Wed Apr 23, 2014 11:18 AM

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Thank you ,that's somewhat encouraging . He is going through chemo and radiation right now . We won't much till August before we get an MRI that can tell us much. God Bless and stay strong.
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