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My Husband's journey with Glioblastoma

Brain Tumor | Last Active: Oct 21 5:20pm | Replies (174)

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@youngwoman

Thank you for sharing the photos I just saw them that is so helpful. I was wondering if there are any other forums that you know about and also have you come across lomustine its after 5 cycles of temodar my doctor suggests treating it with lomustine as there is recurrence. how effective it is ,side effects how you tolerate etc if someone has had it then please reply. Thank you.

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Replies to "Thank you for sharing the photos I just saw them that is so helpful. I was..."

We returned from our visit to Duke Hospital's Brain Tumor Center on Sunday. We are waiting with hope that Steve will be accepted into a clinical trial called D2C7 for Gr III or IV malignant gliomas. It has been going since Dec of 2014 and has had success, with people still alive and doing well five years after starting participation. They did an MRI on Fri to determine if they can safely place one to two catheters into his tumor and then infuse an immunotherapy drug over a period of four days. The drug is supposed to build up his immune system to attack and kill the cancer cells in the tumor. If he is not accepted for this treatment, I believe that lomustine is another treatment that was mentioned. Since Steve's tumor started growing again from Sept to Dec, the doctors at Duke don't recommend continuing with the optune cap. Right now we are in limbo with no treatment until we hear from Duke. We are praying he is a candidate for the trial. I will say that Avastin helped him for a good six months before becoming ineffective. Temodar did not help Steve because his tumor is not methylated. I wish you luck "youngwoman" and pray your tumor will start shrinking. If I can help with any more information, I will be happy to.