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nursnis
@nursnis

Posts: 7
Joined: Sep 04, 2018

Glioblastoma Multiforme and Cognitive Loss

Posted by @nursnis, Wed, Sep 5 9:36am

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

REPLY

Hello @nursnis I am Scott while I do not have this diagnosis, my wife did have this. She survived for 14+ years after her surgery. I'd be willing to discuss how she was effected both in the areas of cognition and physically. They were very different from each other and were not always consistent over time.

That said, I do realize that each individual's journey in thier diagnosis and prognosis is unique, but I am always willing to share what I observed and learned along my wife's journey.

Strength, courage, and peace!

@IndianaScott

Hello @nursnis I am Scott while I do not have this diagnosis, my wife did have this. She survived for 14+ years after her surgery. I'd be willing to discuss how she was effected both in the areas of cognition and physically. They were very different from each other and were not always consistent over time.

That said, I do realize that each individual's journey in thier diagnosis and prognosis is unique, but I am always willing to share what I observed and learned along my wife's journey.

Strength, courage, and peace!

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wow – 14 yrs is a long time for that diagnosis. My sis in law had her tumor removed this past July and woke up with lost of cognitive ability. Hers was R temporal lobe and frankly we didn't expect that to happen. The Dr. said to take her home and live before surgery. The family has chosen no treatment since she isn't able to take care of herself. She moves OK – eats well – is told what to do and does it, but doesn't shower etc on her own. She talks to us all, but it is gibberish. Sometimes comes up with a reaonable statement, but nothing that continues along a reasonable conversation. She wears diapers, but hasn't had to so far. It's just cautionary for hubby now – he cares for her with the help of daytime sitters. She is not alone for fear of falling. We are wondering – how much does she understand if at all? Does she know how sick she is? 3 Drs. agreed with us – no treatment due to her needing care and not being her brilliant self. She doesn't seem to have quality of life. Is this understandable?
Thanks

Hi again, @nursnis Yes, initially they said 7 years for my wife. Her tumor was in the right frontal, but she was lefthanded, which complicated matters and impacts significantly. She had initial physical complications of a significant amount, but overcame them for awhile. Her cognition never returned to anything close to 'normal'. My wife's attention span was miniscule and lasted only for seconds at a time. Her balance wyas also an issue as was her inability to care for herself.

I belive my wife knew how dire her condition was, but we left it at that. We never spoke of that aspect of her disease unless she asked a specific question and then we couched it in the nicest terms we could.

My wife was a very accomplished business woman having a chain of stores before her illness. Her quality of life was forever altered. Ahead of her surgery we discussed and decided on the quality over quantity of life questions so we knew her desire to opt out of certain proceedures, which would have been in the the quantity area, but not the quality area.

Feel free to ask anything else I may have missed!

@nursnis, I'd like to add my welcome to Scott's.
I hope you don't mind, but I added "Cognitive Loss" to the title of this discussion because I think it is an important focus and I'm glad you raised it.

Here are additional discussions about GBM on Connect that you may wish to explore.
– Glioblastoma Resection https://connect.mayoclinic.org/discussion/gbm-resection/
– GBM patient caregiver https://connect.mayoclinic.org/discussion/gbm-patient-caregiver/

Nursnis, you asked "how much does she understand if at all? Does she know how sick she is?" It sounds like that is impossible to know or read from her verbal or body responses. So tough. But perhaps talking with her as if she understands, but not expecting a reliable response would help preserve your respect for her and at the same time manage expectations realistically for those who are caring for her. Am I making sense?

Thanks for the other sites Colleen. I've scanned them already.
We can't tell if Kay knows how sick she is. She doesn't seem to. She hears the word hospice, but doesn't flinch. I think she just cannot process what she hears. Her husband knows it all well. He is no dummy. One of our concerns recently is were we mistaken not to give her chemo and rad. The fact tho remains that she can't care for herself and with that does not have quality of life. She and her husband had it all discussed before she got sick as to what did she want if this happened. He feels she would not have wanted treatment without still having her quality of life to live as she normally has for so many years.
It's a horrid dx to watch.

Hi @nursnis Personally, as a caregiver, I think caregiving and self-doubt often go hand-in-hand. Plus if it isn't self it was in our case frequently doubt from others as to the decisions we had to make in my wife's stead. It is tough for sure! My wife also made the quality of life decision, after consultation with her neuro-oncologist immediately post diagnosis that she would bypass chemo and radiation since in her case it would only be palliative not curative and second that it very might actually cause regression.

Strength, courage, and peace are certainly being sent

Thank You Scott.

@IndianaScott

Hello @nursnis I am Scott while I do not have this diagnosis, my wife did have this. She survived for 14+ years after her surgery. I'd be willing to discuss how she was effected both in the areas of cognition and physically. They were very different from each other and were not always consistent over time.

That said, I do realize that each individual's journey in thier diagnosis and prognosis is unique, but I am always willing to share what I observed and learned along my wife's journey.

Strength, courage, and peace!

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Scott, this is Linda. My husband was fiagnised with gbm in April 2018. The tumor was removed on May 9. We are on vacation currently because when John was diagnosed and they gave him 6 mos – 18 mos he wanted to hear the elk bugle in CO. We will be going home on Saturdsy. I too am very surprised with your wife’s outcome of 14 + Years. I would like to learn and talk more. My husband is 66 and we have done rad and chemo and are doing a clinical trial and more chemo once a month currently. Any advice or info you’d like to provide would be greatly appreciated. TY

@johns66

Scott, this is Linda. My husband was fiagnised with gbm in April 2018. The tumor was removed on May 9. We are on vacation currently because when John was diagnosed and they gave him 6 mos – 18 mos he wanted to hear the elk bugle in CO. We will be going home on Saturdsy. I too am very surprised with your wife’s outcome of 14 + Years. I would like to learn and talk more. My husband is 66 and we have done rad and chemo and are doing a clinical trial and more chemo once a month currently. Any advice or info you’d like to provide would be greatly appreciated. TY

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Hi @johns66 Sorry for the delayed response. Spent the day on airplanes, none of which were of a mind to arrive/depart on time!

It is nice to e-meet you here you here, Linda. I am so sorry to learn of your husband's diagnosis. However, I was cheered to read you are somewhere listening to the bugle of the elk! What a thrill! I live summers in northern Minnesota and wish we had elk up here! Love the summer sounds here — especially the loons in the mornings and evenings! I am glad you are able to do what you are doing!

My wife was initially given 7 years post-op and she doubled that! When she was given the prescription for home hospice she was given 'six months, but probably weeks', and she fought on for just over 14 months. I guess that part of medicine falls under the art of medicine, rather than the science of medicine. Somethings are simply unknown in our lives. As one of my wife's neuro docs said to me: "Scott, there is so much about the brain that is still unknown and when it's broken there is even more we don't understand."

I applaud your husband's decision to enter a clinical trial! That is so great for him and possibly untold thousands in the future! Please tell him some dude he doesn't know is a fan and pulling for him big time!

I'm happy to provide whatever information I can. I'm not any kind of medical professional, so I can only speak from the personal experiences of my wife and me, as a well-seasoned caregiver.

Advice is hard to give since I'm a firm believer in the fact each patient is unique as is their cancer and their journey. For instance, my wife was lefthanded, so the location of her tumor caused her issues that a righty would not have had. That said, I am more than willing to share all I know! Over time I learned a lot of pretty simple tips and tricks to help us manage.

Cheers to you and may the elk be noisy and plentiful!

Strength, courage, and peace!

Please ask any questions you might have!

@IndianaScott

Hi @johns66 Sorry for the delayed response. Spent the day on airplanes, none of which were of a mind to arrive/depart on time!

It is nice to e-meet you here you here, Linda. I am so sorry to learn of your husband's diagnosis. However, I was cheered to read you are somewhere listening to the bugle of the elk! What a thrill! I live summers in northern Minnesota and wish we had elk up here! Love the summer sounds here — especially the loons in the mornings and evenings! I am glad you are able to do what you are doing!

My wife was initially given 7 years post-op and she doubled that! When she was given the prescription for home hospice she was given 'six months, but probably weeks', and she fought on for just over 14 months. I guess that part of medicine falls under the art of medicine, rather than the science of medicine. Somethings are simply unknown in our lives. As one of my wife's neuro docs said to me: "Scott, there is so much about the brain that is still unknown and when it's broken there is even more we don't understand."

I applaud your husband's decision to enter a clinical trial! That is so great for him and possibly untold thousands in the future! Please tell him some dude he doesn't know is a fan and pulling for him big time!

I'm happy to provide whatever information I can. I'm not any kind of medical professional, so I can only speak from the personal experiences of my wife and me, as a well-seasoned caregiver.

Advice is hard to give since I'm a firm believer in the fact each patient is unique as is their cancer and their journey. For instance, my wife was lefthanded, so the location of her tumor caused her issues that a righty would not have had. That said, I am more than willing to share all I know! Over time I learned a lot of pretty simple tips and tricks to help us manage.

Cheers to you and may the elk be noisy and plentiful!

Strength, courage, and peace!

Please ask any questions you might have!

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Was our wife a survivor for months or years. I’m seeing both listed. Also, my husband is a lefty so if you have any advice on that it would be greatly appreciated.

Hi @johns66 I'm sorry my posts have been confusing.

My wife, at age 49, was diagnosed with her tumor. She had a resection then, which also incurred a significant brain bleed. At that time the doctors gave her a prognosis of 7 years to live. She lived for over 14 years total. In the 12th year of her journey her neuro-oncologist prescribed hospice care for her. At that time he said she may live for six months, but to expect it to be only a matter of weeks. She chose home hospice care over a hospice care facility. We were able to do that, but I also know this is not possible for everyone. She lived in home hospice care for just over 14 months before she finally lost her war.

I hope this is clearer. We always looked at her war in two pieces. The first years and then the hospice months.

Her doctors suggested to us the location of her tumor would have been less compromising to her had she been right handed. Our first indication of the tumor's presence was when she began having olfactory and visual hallucinations. The tumor damaged her physical condition at first with complete left side paralysis and a loss of abilities such as walking, talking, swallowing, eating, etc. These came back after about a year and half of OT and PT. She also had significant cognitive losses such as losing her ability to speak, read, write, do math, control her emotions, control her impulses, and lost all ability to focus for longer than a few seconds at a time. She was able to relearn to speak, read, and write, but never to do math. She also never recovered her abilities to control her impulses and ability to focus.

Her changes/declines during hospice is a different topic.

Strength, courage, and peace!

@IndianaScott

Hi @johns66 I'm sorry my posts have been confusing.

My wife, at age 49, was diagnosed with her tumor. She had a resection then, which also incurred a significant brain bleed. At that time the doctors gave her a prognosis of 7 years to live. She lived for over 14 years total. In the 12th year of her journey her neuro-oncologist prescribed hospice care for her. At that time he said she may live for six months, but to expect it to be only a matter of weeks. She chose home hospice care over a hospice care facility. We were able to do that, but I also know this is not possible for everyone. She lived in home hospice care for just over 14 months before she finally lost her war.

I hope this is clearer. We always looked at her war in two pieces. The first years and then the hospice months.

Her doctors suggested to us the location of her tumor would have been less compromising to her had she been right handed. Our first indication of the tumor's presence was when she began having olfactory and visual hallucinations. The tumor damaged her physical condition at first with complete left side paralysis and a loss of abilities such as walking, talking, swallowing, eating, etc. These came back after about a year and half of OT and PT. She also had significant cognitive losses such as losing her ability to speak, read, write, do math, control her emotions, control her impulses, and lost all ability to focus for longer than a few seconds at a time. She was able to relearn to speak, read, and write, but never to do math. She also never recovered her abilities to control her impulses and ability to focus.

Her changes/declines during hospice is a different topic.

Strength, courage, and peace!

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Ok thank you that is much clearer. Hers must not have been a gbm. Is that correct? Johns is a gbm and has been given 6 mos to 1.5 yrs. I’m not sure if I mentioned that he is also wearing the Optune device. Thank you so much.

Hi @johns66 She was initially diagnosed with a grade III malignant glioma and it went to grade IV at some point. I recall they also called it diffusely infused.

@IndianaScott

Hi @johns66 She was initially diagnosed with a grade III malignant glioma and it went to grade IV at some point. I recall they also called it diffusely infused.

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Ok thank you and sorry for your loss.

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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