Glioblastoma Multiforme and Cognitive Loss

Posted by nursnis @nursnis, Sep 5, 2018

Has anyone experienced removal of a temporal lobe Glio with cognitive loss at surgery – not to recover cognitively, but better physically? Would like to discuss that aspect of that diagnosis

@IndianaScott

Thanks @johns66 In this forum, the sorrow is understood. I, too, am sorry for the journey your husband is on and yours as a caregiver.

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Thank you.

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Bain Tumors What is the likely lifespan of someone with glioblastoma who does not take chemo and radiation after surgery?

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@coachconnors

Bain Tumors What is the likely lifespan of someone with glioblastoma who does not take chemo and radiation after surgery?

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Hi, @coachconnors – welcome to Mayo Clinic Connect. I've merged your post here so that you could meet others familiar with glioblastoma. I'm not able to provide any medical advice, not being a medical professional, but I'm thinking that other members in this discussion may have some thoughts about what you asked about the potential lifespan of someone with this disease who does not take chemo or radiation after surgery, as well as on experiencing glioblastoma in general.

@coachconnors, is this your personal diagnosis, or a loved one's? Have you or this loved one recently had surgery and are contemplating this decision?

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In our case with our relative we were told about 6 months. It's been 3 months and so far so good altho we think we might be seeing a small bit of deterioration at this time.

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@coachconnors

Bain Tumors What is the likely lifespan of someone with glioblastoma who does not take chemo and radiation after surgery?

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Hello @coachconnors Nice to e-meet you here on Mayo Connect. I am Scott and my wife had surgery for her brain tumor and due to its location and the complications from surgery she made the decision not to have any chemo or radiation.

She fought her war for over 14 years, but I fully realize each patient and each tumor is very different.

Are you just asking out of general interest?

Strength, courage, and peace!

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Our relative had a glio removed in July of this year. No treatment given because cognitive ability was lost with the seizure 4 days prior to the surgery. Now as of yesterday she has become non-mobile, and non-verbal accept for a few words. Only has had eggs to eat today – nothing yesterday. Her hubby is thinking this can go one for months – We don't expect it can. Any comments re the end of life with a GLIO?

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Hi @nursnis,

I merged your discussion in to your previous discussion started on Glioblastoma Multiforme and Cognitive Loss so that you could reconnect with the members who've joined this discussion.

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@kanaazpereira

Hi @nursnis,

I merged your discussion in to your previous discussion started on Glioblastoma Multiforme and Cognitive Loss so that you could reconnect with the members who've joined this discussion.

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Thank you so much!

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@nursnis

Our relative had a glio removed in July of this year. No treatment given because cognitive ability was lost with the seizure 4 days prior to the surgery. Now as of yesterday she has become non-mobile, and non-verbal accept for a few words. Only has had eggs to eat today – nothing yesterday. Her hubby is thinking this can go one for months – We don't expect it can. Any comments re the end of life with a GLIO?

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Hi @nursnis
My mother lost her battle with GBM. She Was diagnosed stage 4. Of the time they diagnosed her she had over 100 fingers that wrapped around her brain and her brain and two of the fingers develop tumors at the end of them. Surgery was not an option for her and we chose to do radiation for 30 days straight and a round of chemo in hopes to slow down the disease process. Over 3 months time she declined by the 3rd month she had no core strength to sit up on her own. Her headaches were getting worse she became more and more confused. We decided it was time to get help from hospice. But her oncologist refused to order hospice. I fired him and went with the hospice medical director. From my medical background and my personal experience, the end process of a GBM battle is painful for the patient and the families. I’m am sorry there is no easy way to tell anyone how the end will be as it is different for each individual. For my mom within 24 hrs she went from talking and eating to completely unresponsive other than moaning in pain. Within those 24 hours the cancer created holes externally and she went to sleep surrounded by her family and love she went to her forever home.

Praying for peace as you all endure this journey.
Dawn

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I am so sorry for your loss Dawn. GBM is a horrid disease. I too have a medical back ground and it is so hard to watch the unknown progress. We are hoping for a peaceful ending. Our sis in law does request tylenol for H/A every day – but she is still eating well, however is unable most of the time to follow directions. Is sleeping more than previously. We just have to support her hubby and help in any way we all can to keep her comfortable.

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@nursnis

I am so sorry for your loss Dawn. GBM is a horrid disease. I too have a medical back ground and it is so hard to watch the unknown progress. We are hoping for a peaceful ending. Our sis in law does request tylenol for H/A every day – but she is still eating well, however is unable most of the time to follow directions. Is sleeping more than previously. We just have to support her hubby and help in any way we all can to keep her comfortable.

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Hi @nursnis, it's been a little while. Just wondering how your sister is doing? How are you?

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@colleenyoung

Hi @nursnis, it's been a little while. Just wondering how your sister is doing? How are you?

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Thanks for asking Colleen. She is back in a home and her left side is immobile – we think she may have had a TIA last week and that is what caused the stroke like symptoms. She sleeps about 18 hrs/day now. Doesn't talk a lot, but still knows us all. Has to be totally cared for – does eat, but makes a huge mess and always needs help. It is so very sad to see her like this. I guess it's all the normal progression. I hope peace will come to her sooner rather than later.. Very tough to see her husband and siblings watch her also.
Mary

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For low grade brain tumor received SOC, Temodar and IMRT. Have experienced cognitive impairment vis a vis memory. Your experience?

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@megxoxo

For low grade brain tumor received SOC, Temodar and IMRT. Have experienced cognitive impairment vis a vis memory. Your experience?

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@megxoxo, welcome to Connect. I moved your message to this discussion in the Brain Tumor group where you'll meet other members like @nursnis @johns66 @bjh369 @jaxjo @donnamar and @IndianaScott some of whom have experienced cognitive impairment and memory issues.

Megxoxo, you mention that you've had SOC, Temodar and intensity-modulated radiotherapy (IMRT). Is SOC surgery?
How has your memory been affected?

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@colleenyoung

@megxoxo, welcome to Connect. I moved your message to this discussion in the Brain Tumor group where you'll meet other members like @nursnis @johns66 @bjh369 @jaxjo @donnamar and @IndianaScott some of whom have experienced cognitive impairment and memory issues.

Megxoxo, you mention that you've had SOC, Temodar and intensity-modulated radiotherapy (IMRT). Is SOC surgery?
How has your memory been affected?

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Colleen Young ,SOC stands for standard of care.

My short term memory has been even affected by treatment.

Thanks, Meg

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