CancerCompass message board discussion started by flfrog on 5/3/2008 http://www.cancercompass.com/message-board/message/all,23712,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My dad was diagnosed 11/16/07 GBM and has 90% of a 3 in x 3/5 in x 2 in right frontal lobe tumor removed.  he did proton beam radiation and 42 days of temodar.  He just finished his 3rd 5/23 day cycle of temodar and the MRI shows minimal increased swelling and regrowth.  His neuro oncologist is going to do another MRI in a month and said we shouldn't switch treatments now because we are in the middle of a 6 month chemo regimen.  We saw the neurologist last week too and at this time he has no neuro side effects from the re-growth. It's wierd that it's growing but there's no change on the outside...I just hope it stays that way!All I've read is that once it starts growing it will continue to do so.  has anyone had a re-growth MRI and then stable MRI's again while just staying on Temodar? God Bless you all! flfrog Sat, 03 May 2008 00:00:00 GMT My dad just had his first regrowth aswell.... and they are keeping him on temodol for 2 months and then doing an MRI.I wondered why they aren't changing him to a different chemo aswell.They said to see what happens in the two months....Best of luck to you and your family, Hopefully our docs know something we don't. Kara-DadsCheerleader Sat, 03 May 2008 00:00:00 GMT Hmmm....I'm thinking I'd go for a second opinion if I were in your shoes.  My husband did not have a good response to Temodar.  He had some shrinkage from the initial treatment in the primary tumor--about 25%--but he also had some cystic areas with cancerous linings progress in size during treatment.  Eventually, they stopped chemo and completed a second craniotomy, and removed all the "bad stuff" they could see.  Since then, we have gotten the opinions of three other oncs. and they all have said he needs additional treatment with more aggressive chemo so we are basically starting over almost a year into this disaster.  I wish we would have gone for a second opinion a long time ago.  Maybe he would be nearing the end of treatment and feeling better by now.  It is not good to second guess the decisions you make along the way, but it is hard not to do so.  The first onc wanted to just stop treatment after the second surgery because he said there was "no data to support that stopping and restarting chemo will have any therapeutic benefit".Getting a second opinion can be as easy as sending his records for review at another facility.  If you can get to a neuro-oncologist, do so.  Many people on this board speak highly of Duke in NC.  We will be going to Dr. Arenson in Denver next week.  We will then return home to Ohio and he will begin treatment locally with a medical oncologist that has agreed to work with us and coordinate treatment with Dr. Arenson.Good luck!Jackiekay jackiekay Sat, 03 May 2008 00:00:00 GMT  On 5/3/2008 Kara-DadsCheerleader wrote:My dad just had his first regrowth aswell.... and they are keeping him on temodol for 2 months and then doing an MRI.I wondered why they aren't changing him to a different chemo aswell.They said to see what happens in the two months....Best of luck to you and your family, Hopefully our docs know something we don't.From what My fiance experienced with doing that with the temodar it never failed....the first treatment it was relatively smaller 2nd round it stayed the same always on the 3rd round it would grow twice as big.  He started CPT-11 combined with the temodar it worked beautifully.  Ask the dr about this. shellyjo Mon, 05 May 2008 00:00:00 GMT Avastin is an option for when Temedor is no longer working.  I would ask into it.  Since it is a recurrence this is available in clinical trials.You might want to check www.virtualtrials.com Gaylec Thu, 08 May 2008 00:00:00 GMT  On 5/5/2008 shellyjo wrote: On 5/3/2008 Kara-DadsCheerleader wrote:My dad just had his first regrowth aswell.... and they are keeping him on temodol for 2 months and then doing an MRI.I wondered why they aren't changing him to a different chemo aswell.They said to see what happens in the two months....Best of luck to you and your family, Hopefully our docs know something we don't.From what My fiance experienced with doing that with the temodar it never failed....the first treatment it was relatively smaller 2nd round it stayed the same always on the 3rd round it would grow twice as big.  He started CPT-11 combined with the temodar it worked beautifully.  Ask the dr about this.Shelly,What was your Dad's diagnosis, when and what dosage of chemo combined is he on?  I was interested to read you reply.  Not heard of that combo before!  That sounds like really encouraging news - when did all this happen?Thanks so much,Clare clarejoanne Fri, 09 May 2008 00:00:00 GMT