Is my wife's GBM back?

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Is my wife's GBM back?

by wagthecaregiver on Thu Nov 19, 2015 07:13 PM

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My wife was diagnosed with GBM stage 4 in April 2014. She had surgery- total gross resection, radiation and chemo for 6 weeks then one year of chemo through this past June. Each MRI since looked better until this this past Monday. On Tuesday our oncologist told us there's something there. We need to get a PET scan. I asked if this is a recurrence and he said he didn't know. When we saw the scans this was the first scan I saw that didn't look better than the previous one. She has had some balance issues of late along with headaches at the tumor location. (Right temporal lobe above the ear). If this is a recurrence what happens next? Has anyone been through a recurrence that can help us with more information? I am praying for a miracle. I also know how aggressive this type of cancer is. Is it better to go through the same protocol again? Or are there trials that would be of greater benefit? Thank you and God Bless.

RE: Is my wife's GBM back?

by rmp1399 on Thu Nov 19, 2015 10:10 PM

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My mom had her first reoccurance in August of this year. She was diagnosed in January of 2013. Luckily surgery was an option for her. It was in the same location as before...right frontal. She had the neuroblate procedure this time. This is so much less invasive then her previous craniotomy. It's is just a small hole where a laser is inserted to basically cook the tumor. She was home in 2 days completely fine. Ask if this is an option. I highly recommend it. I know there are certain qualifications for it though. She started ccnu this time as her chemo. It's one pill and she's been handling it ok. Ask also for trials. There weren't any available for my mom at this time but we are all for them if one opens up. She did the celldex trial for 2.5 years before this first reoccurance and I truly believed that is what kept the tumor away for so long.

RE: Is my wife's GBM back?

by Dodgerblue on Thu Nov 19, 2015 11:07 PM

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Many trials require initial treatment protocol before eligibility, I would definitely look at the many promising trials in immunotherapy.  Duke seems to be the Mecca in the field, may want to start there.  Best of luck, hopefully it's just radiation necrosis, which is real possibility.

Dodger

RE: Is my wife's GBM back?

by Sisterinlaw5 on Fri Nov 20, 2015 02:15 PM

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I am a caregiver. Her tumor showed slight regrowth in Sept of this year after being diagnosed in July of 2014. She did the standard surgery, radiation, chemo. The maintenance chemo was stopped after 3 rounds because she couldn't take the nausea and neuropathy, stomach issues etc (she is a very negative person by nature and was terribly distraught everyday) with just no will to fight. Over the summer she seemed to regain some energy but still slept 4+ hrs a day. MRIs seemed to look okay, however the Sept 2015 slides showed some regrowth into cerebellum. Back down to MDAnderson where a 2nd surgery was ruled out. They wanted her to go back on the Temador but she refused. She opted for Avastin infusions (3 so far). Cognitive decline is substantial and headaches, fatigue (sleeps 10+ hrs per day). Motivation to live is high but quality of life is zero. Can't read anymore, so she watches terror news all day everyday. More negativity. She isn't a people person so she only prefers company of her 2 dogs. Very sad to see. Next MRI is 12/3, so we'll see if the Avastin has been effective or not. I am sorry to hear your bad news. Being with someone who suffers with this disease is very hard. Get some help and take a break now and then. You need to look after yourself too. Best of luck.

RE: Is my wife's GBM back?

by wagthecaregiver on Fri Nov 20, 2015 07:14 PM

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On Nov 19, 2015 10:10 PM rmp1399 wrote:

My mom had her first reoccurance in August of this year. She was diagnosed in January of 2013. Luckily surgery was an option for her. It was in the same location as before...right frontal. She had the neuroblate procedure this time. This is so much less invasive then her previous craniotomy. It's is just a small hole where a laser is inserted to basically cook the tumor. She was home in 2 days completely fine. Ask if this is an option. I highly recommend it. I know there are certain qualifications for it though. She started ccnu this time as her chemo. It's one pill and she's been handling it ok. Ask also for trials. There weren't any available for my mom at this time but we are all for them if one opens up. She did the celldex trial for 2.5 years before this first reoccurance and I truly believed that is what kept the tumor away for so long.

Thank you very much for the info. I pray your mom can live a long life and that they can find a cure for this dreadful cancer. She will be getting a PET scan this next Friday after Thanksgiving. We will know more then and will be able to make a better decision. We have been considering Duke as an option if this indeed is a recurrence. I will be posting again after we know if this is a recurrence. Take care and God Bless.

RE: Is my wife's GBM back?

by wagthecaregiver on Fri Nov 20, 2015 07:17 PM

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On Nov 19, 2015 11:07 PM Dodgerblue wrote:

Many trials require initial treatment protocol before eligibility, I would definitely look at the many promising trials in immunotherapy.  Duke seems to be the Mecca in the field, may want to start there.  Best of luck, hopefully it's just radiation necrosis, which is real possibility.

Dodger

Thank you for this advice. We will be looking to Duke as an option if this is a recurrence. She will be getting a PET scan so we can know for sure if this is the tumor coming back. It was in the right temporal lobe above the ear. That's where this MRi is showing something. We are praying and hoping that this was just a bad MRI. I will post more after her PET scan next Friday after Thanksgiving. Take care and God Bless.

RE: Is my wife's GBM back?

by wagthecaregiver on Fri Nov 20, 2015 07:26 PM

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On Nov 20, 2015 2:15 PM Sisterinlaw5 wrote:

I am a caregiver. Her tumor showed slight regrowth in Sept of this year after being diagnosed in July of 2014. She did the standard surgery, radiation, chemo. The maintenance chemo was stopped after 3 rounds because she couldn't take the nausea and neuropathy, stomach issues etc (she is a very negative person by nature and was terribly distraught everyday) with just no will to fight. Over the summer she seemed to regain some energy but still slept 4+ hrs a day. MRIs seemed to look okay, however the Sept 2015 slides showed some regrowth into cerebellum. Back down to MDAnderson where a 2nd surgery was ruled out. They wanted her to go back on the Temador but she refused. She opted for Avastin infusions (3 so far). Cognitive decline is substantial and headaches, fatigue (sleeps 10+ hrs per day). Motivation to live is high but quality of life is zero. Can't read anymore, so she watches terror news all day everyday. More negativity. She isn't a people person so she only prefers company of her 2 dogs. Very sad to see. Next MRI is 12/3, so we'll see if the Avastin has been effective or not. I am sorry to hear your bad news. Being with someone who suffers with this disease is very hard. Get some help and take a break now and then. You need to look after yourself too. Best of luck.

Thank you so much for that. She recently had some balance issues. Not real bad but noticeable. We focus on our faith in Christ. That's how we get through this. We have 3 children and we have to be strong for them. She gets fatigued and takes naps every day. She keeps a positive attitude through this for herself but also for our kids. It makes the days go better for them and all of us. I will pray for her and you and your family. I am doing little things for myself when I can. I also am keeping a positive attitude during this time and will take it only one day at a time. I don't know how I will react if we find out that this is a recurrence. Hoping for good news. Thanks for responding. Have a wonderful Thanksgiving.  

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