Low Dose Daily Temodar Question

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Low Dose Daily Temodar Question

by rward on Fri May 20, 2016 04:32 PM

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I was wondering if anyone has had good results with daily tmz on a low dose for recurrence. My wife had a recurrence (aa3) one year after the first surgery and it has been recommended to try Temodar again on this dosing. I'm questioning it because her first MRI following the initial surgery showed possible recurrence, and every subsequent MRI had an area of concern (nodular enhancement) but her oncologist disagreed with the radiologists report, saying it's not a recurrence. She was on Temodar when these MRIs were done. She had a full resection and full chemo radiation no problems and the tumor was IDH1 mutated so we were expecting better results. Thanks,

Ray

RE: Low Dose Daily Temodar Question

by Karinsky64 on Tue May 31, 2016 12:43 AM

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My hubby has been on it for the last 3 months. 110mg. MRI last week With results today. Didn't help one bit. Tumor is back and already 3cm. We now have to go the avastin route and I'm praying this helps. Dx Jan 2015 surgery rdx and chemo 5/23 for 6 months. Oct MRI showed something but they weren't sure. Next MRI Jan 2016. Recurrence 2.5cm. Surgery feb 19. Second time around was a rough go for him so tired and the pain was incredible. No further deficits tho. Started daily Tem til now. From day one he has done so well he hikes bikes walks 5 kms day. Keeps his mind active and pushes through.

RE: Low Dose Daily Temodar Question

by rward on Tue May 31, 2016 10:42 PM

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Thanks for the reply. Sorry to hear the Temodar isn't working on your husband, and about the pain and fatigue after surgery.

That's great that he didn't have any deficits and that he is very active both physically and mentally. I really hope the avastin works. Wishing you both luck.

Ray

RE: Low Dose Daily Temodar Question

by kristi669 on Thu Jun 02, 2016 08:31 PM

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I'm new to all of this and was just wondering what kind of chemo did your wife have?  It was just recommended to me that I have chemo (PCV) and radiation after I had an oligo grade 2 removed back in March.  My pathology came back non cancerous but theoncologist said that it was a slow growing cancer.  I also have the IDH1 mutations.  My post op MRi showed a possibility of some of the tumor remaining.  My surgeon stated that this was probably just leftover blood showing, he is almost positive that he removed all of my tumor.  He stated that the next MRI I have schedule for September, will probably show the same thing???  I am so undecided on chemo and radiation at this time and I would sure like some feed back from people that have actually done it.  Thanks for listening

RE: Low Dose Daily Temodar Question

by rward on Fri Jun 03, 2016 01:51 AM

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My wife had Temodar on the 5/23 schedule and full radiation. She had her second surgery 3 weeks ago and her post op CT scan showed the same thing- an enhancing area which her surgeon explained shows up on most post surgical scans, which is most likely blood from the surgery. A resident surgeon had previously told my wife that there was some remaining tumor, which raised concern and her surgeon then described what it most likely was.

I would presume your next MRI would reveal that area to be clear, considering his assertion that he removed all visible tumor and the possibility of blood leftover from surgery.

Ray

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