I am a new GBM caregiver

[Denacm]

I am new to this site. I landed here because my husband has been diagnosed with GBM. He has had a resection and is having radiation and taking Temodar at the present time. He is about half way through the treatments at this point. I wanted to hear others stories and share mine as it helps me to cope. Please share your stories so that I can prepare to care for him after this first step. He is doing great with the treatments, physically, but has some confusion each day and his short term memory is suffering. These can lead to agitation which can be hard to deal with sometimes. He is staying positive and active which I feels helps greatly. Please let me know what to expect next so that I can do by best with his care. Thank you and blessings to all!

[Keith_K]

My Dad experienced/is experiencing similar side effects. I'll give you a low down on my family's GBM story. My brother and I witnessed my dad's seizure, so that's how we found his tumor located in the right frontal lobe. 1 month later, Grandpa was having trouble finding the right words for things. My uncle did a CT scan looking for a stroke and found his GBM tumor in the left temporal lobe. Both my dad and grandpa went through the craniotomy followed by 6 weeks of radiation and Temodar. Grandpa's follow-up scan was clear so he is doing Temodar 5 times every 4 weeks. Dad's follow-up scan showed 'change,' which could have been dead tissue, but didn't know for sure so they are treating as if it progressed. Dad's treatment is now Avastin via infusion once every two weeks, Etoposide for 21 days, and cyclophosphamide 7 days on, 7 days off, then 7 days on. The DR believes the fatigue, chemo brain are effects from treatment and not tumor growth. Dad is also using the Novo-TTF device (Tumor Treating Fields). It is a new 4th treatment for GBM that has no side effects. All you do is have electrodes attached to your head to stop cancer cell division. Look it up. The science behind it is amazing. This DR is the only one in KC authorized to use the device within 150+ miles of KC. Dad is one of two patients here on the device, one of just over 100 in the US, and one of the few that is using it preventatively. The FDA approval came in April 2012 after studies on GBM recurrence showed to extend life expectancy. The change in Dad is hard to adjust to, especially for my teenage brother. His logic seems to be off. Things like: Calling my grandparents and thinking they are on the computer because he got a busy signal even though they have had WIFI for 5+ years; having to remind him to put his seat belt on every time we get in the car; getting a thought in his head and obsessing over it until he can do something about it. I find it hard to pin point what exactly causes this because there is so much that has changed for him.

[Denacm]

Thanks so much for your response. It sounds like the same changes are happening with my husband. He is confused and obsesses over everything. Thank you for the insight into different treatments. Just wondering the age of your Dad and how long since diagnosis?

[Minx]

Hi Denacm Nov 2011 we were given the dreaded GBM4 diagnosis. Since then my hubby has had two craniotomies,two rounds of radiation (one for 6weeks, the other 5 weeks) 6 MRIs endless cycles of temodal (12months) after progression it was time to change chemo to procarbazine and temodal, then dreaded progression again with new tumour inoperable we are now on carboplatin and etopiside. Throughout he has remained positive, driven and taken little time off work. I am worried everyday he leaves to catch his train for work, but this is what he wants to do for as long as he can. This is one piece of independence that he has. He does sometimes look at me vaguely, but this passes quickly. We have three kids, do you have any? Its a bumpy road at times, but live it day by day. Minx

[Keith_K]

My dad was 54 at diagnosis and 55 right now. We are almost 7 months out from diagnosis. My dad gets confused too and get a thought in his head and obsesses over it until it is dealt with. It drives him and us CRAZY. He also forgets little things, like putting his seat belt on when he gets in the car or forgetting to exit the on-screen TV guide. By the way, I just realized this is an Australian site. I'm in the USA. Not sure it makes a difference. It is good to know that treatment elsewhere seems about the same.

[Keith_K]

I'm sorry to hear your husband has had so much intense treatment. You truly have to take things day by day and embrace those days. It is also a rollercoaster with ups and downs. SO know there will be ups along the way.

[Minx]

Ah yes it is good to see that treatments are similar around the world. I did laugh out loud when I read that your dad forgets to exit the on-screen TV guide, that drives my kids wild when their dad does that. His is due to visual field problems, not that he would admit. He also has been taking his seatbelt off before I stop the car (strict rule in our house with the kids) on the weekend he got out of the car as I was trying to park. Couldn't see why I was upset!

[tatsoi]

My dad was diagnosed july 2012.he was 59 at the time.The tumour was on his right temporal lobe. resection and temodal and radiation. monthly round of temodal and was on a clinical trial. He was a bit spacey as his brain was realigning after the operation and memory loss was apparent. He did improve, his balance became better and his memory. He had clear scans..until about a week ago :( and about a week before that MRI, he experience what is called transient aphasia (basically he was unable to talk or understand what people were saying to him...it lasted under an hour) so yeah the last mri showed the tumour was back, very close to the original one that was removed. He is on intensive chemo and in about a week he and his medical team will decide what next?? ahhhh...the damn waiting... it's almost a year since he first went into hospital following weeks of intense headaches to find out such awful news. I'm so sorry this has happened in your family. Many people hear share your pain. take care xx

[Denacm]

Thank you for sharing your story. It seems to help me plan for what lie ahead for us. My husband seems to be gaining cognition and reasoning although he struggles with performing simply physical tasks. When he can't perform them it really puts him in a tail spin and he becomes almost childlike for a bit. I am hoping for the best and trying to plan for the worst. Thank you for your kind words. I will hold you and your family in my thoughts and prayers during this difficult time. Take care and I wish you peace.

[tatsoi]

also...I think my dad felt better when he came off the dexmethosone too...it's great for the brain swelling..but he got quite agitated from it and affected his mood and sleep. It's such an awful shock in the beginning, such big changes to get used to...I think it's really important to get good support for yourself too...It's such a tough ride for the carers. xx