Stage four GBM- challenges of post surgery personality changes

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Stage four GBM- challenges of post surgery personality changes

by maryblack on Wed May 02, 2018 08:58 AM

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Hi,

I was wondering if there are others with experience of personality changes after surgery for resection of an extensive Stage 4 GBM. A friend who is 69 years old and previously in excellent health has just had surgery and finished radiotherapy and will now go on monthly chemo regime.

He is physically making a reasonable recovery but he has subtle personality changes that make caring for him quite challenging. He has prominent negativity and is highly critical of all those around him. He seems to have lost his empathy and is very self centred. 

I realize this is complicated by the emotional reactional to his diagnosis which is only 8 wks ago and has resulted in a massive change in his independance and functional status but it seems to be more than just that. Also of course the radiotherapy is not helping. HE is now off all steroids and just on antiseizure meds. 

He is married and his wife is finding it very difficult as the connection between them seems to be very much changed. It is isolating as it is hard to discuss this with people without feeling disloyal to her husband. 

Does anyone have any thoughts or experience of this- would appreciate hearing as it is difficult navigating this new illness.

Thanks.

RE: Stage four GBM- challenges of post surgery personality changes

by modesta on Wed May 02, 2018 02:29 PM

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yes! getting off the steroids will help - but depending on where the tumor was/is has alot to do with the personality change.  I tried to remember and always reminded my children that the change is NOT the real person he used to be.  Hope that makes sense - alot of patience is needed.

So sorry!!!

RE: Stage four GBM- challenges of post surgery personality changes

by CallMeLucky on Thu May 03, 2018 02:44 PM

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Sorry to hear about the challenges.  The description you provide is eerily similar to my father-in-law's experience.  He had just turned 70, was in excellent health, and found out stage 4 GBM.

Yes his personality changed.  It changed from the GBM, then it changed again post surgery, and then the radiation did a real number on him.  He was difficult at times, sad other times, and overall not the same person he was.

Sadly this seems to be the progression of this disease.  All we could do was be patient and try to care for him the best we could.

RE: Stage four GBM- challenges of post surgery personality changes

by Erinsher on Thu May 03, 2018 02:49 PM

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I too have experienced that, my husband was diagnosed in February and the steroids definitely had a factor in his personality change. Once he was off it imporoved, however he is not quite back to where he was. The radiation and temodar also affected him, and I have had to grieve the loss of who he was. I would say he is at about 98% percent and I have to be grateful that he’s here and so far he’s doing well. It is challenging but please tell her to be strong and possibly seek help as this cancer is a huge life changer. Best of everything to her (and him of course! )

RE: Stage four GBM- challenges of post surgery personality changes

by Broadswordsman on Fri May 04, 2018 09:23 AM

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On May 02, 2018 8:58 AM maryblack wrote:

Hi,

I was wondering if there are others with experience of personality changes after surgery for resection of an extensive Stage 4 GBM. A friend who is 69 years old and previously in excellent health has just had surgery and finished radiotherapy and will now go on monthly chemo regime.

He is physically making a reasonable recovery but he has subtle personality changes that make caring for him quite challenging. He has prominent negativity and is highly critical of all those around him. He seems to have lost his empathy and is very self centred. 

I realize this is complicated by the emotional reactional to his diagnosis which is only 8 wks ago and has resulted in a massive change in his independance and functional status but it seems to be more than just that. Also of course the radiotherapy is not helping. HE is now off all steroids and just on antiseizure meds. 

He is married and his wife is finding it very difficult as the connection between them seems to be very much changed. It is isolating as it is hard to discuss this with people without feeling disloyal to her husband. 

Does anyone have any thoughts or experience of this- would appreciate hearing as it is difficult navigating this new illness.

Thanks.

As someone with GBM and having undertaken much research during my journey, what you say is absolutely correct. The steroid usually prescribed, dexamethasone , has beneficial effects in reducing swelling but can affect personality and mood and can cause an ill-tempered response to loved ones. Further, it reduces muscle mass and I have bingo wings and loose flesh, all unwanted. I hope this helps a little Best wishes Brian

RE: Stage four GBM- challenges of post surgery personality changes

by tiffanyjean on Fri May 04, 2018 10:30 PM

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On May 02, 2018 8:58 AM maryblack wrote:

Hi,

I was wondering if there are others with experience of personality changes after surgery for resection of an extensive Stage 4 GBM. A friend who is 69 years old and previously in excellent health has just had surgery and finished radiotherapy and will now go on monthly chemo regime.

He is physically making a reasonable recovery but he has subtle personality changes that make caring for him quite challenging. He has prominent negativity and is highly critical of all those around him. He seems to have lost his empathy and is very self centred. 

I realize this is complicated by the emotional reactional to his diagnosis which is only 8 wks ago and has resulted in a massive change in his independance and functional status but it seems to be more than just that. Also of course the radiotherapy is not helping. HE is now off all steroids and just on antiseizure meds. 

He is married and his wife is finding it very difficult as the connection between them seems to be very much changed. It is isolating as it is hard to discuss this with people without feeling disloyal to her husband. 

Does anyone have any thoughts or experience of this- would appreciate hearing as it is difficult navigating this new illness.

Thanks.

My husband was diagnosed with GBM a year ago.  When he first came home after the surgery and they were weaning him from the steroids he was quite mean.  This has gotten better but he is still a different person.  He lashes out at me over the silliest things at times and I have no clue what will set him off.  It is difficult at times to be around him.  He is also very restless and unable to relax.  I think it is very hard for him when he can't remember the names of places or people.  Communication is difficult for us at times and it is very frustrating for us both.  I know he will never be the same person again.  Overall he is doing amazing and has had no complications.  The Lord has blessed us in many way and I am grateful he continues to do well.  His personality is different in some areas and it is not an easy road.  I take the brunt of his frustrations and try not to take it personally.  Hard to do at times though.  I just try to be thankful for each day he feels good and remind him we are on the same side.  One day at a time!  May God bless you.

RE: Stage four GBM- challenges of post surgery personality changes

by massagemom on Sat May 05, 2018 02:53 AM

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Yes, this sounds all too familiar to me as the wife of my husband who was diagnosed on 11/30/16 with GBM - Stage 4 in the temporal area (hippocampus).  He seemed pretty good after the first surgery with just a few upsetting moments and actually went back to doing everything he normally did.  Radiation definitely changed things for him and it seemed to take time to show up the deficiencies. 7 months later he had a 2nd surgery to determine if the growing mass was tumor or mainly scar tissue.  After that surgery he lost a lot of mojo and love of things he always did. Never got back on the mountain bike.  They started Avastin infusions and they worked for about 1 month (and 1 MRI that showed slight improvement in the tumor), but unfortunately 2 months later (today) we got the bad news about the tumor aggressively growing. Going to try an added chemo drug to slow things down but time is growing shorter. New changes everyday.  BTW, my husband is now 59 and was in excellent health and in great shape.  He still looks good on the outside but I am losing the man I used to know with all the language and cognitive skills declining. Today was one the hardest days for me so far. I guess you are never prepared for the eminent progression even though I was well aware of all the signs.  We are just trying to live each day to the fullest while he is physically able.

So sorry I couldn't be more positive but a little down today.

RE: Stage four GBM- challenges of post surgery personality changes

by Charykid on Mon May 07, 2018 05:19 AM

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Hi 

We are going through the same boat. My wife is 43 and was removed uterus, overies mid last year. Then found the cancer in biopsy and she was treated with Chemo and Radio therapies when she was in stage 3. Now the cancer replapesed into stage 4. Since she started Chemo her personlaity has changed. She is getting irritated for every single thing. Picky on every single thing and getting upset quickly. This obviously creating problems among 2 grownup kids me and my wife. 

There are 2 resons.

1. Chemo or Radio is affecting the neural system killing active / fast growing brain cells which is affecting the cognigence and memory. Ultimately when memoreis are week (low electricity in brain) poeple only remember which were their strong memories. Obviously those are arguments and fights. Why fights are strong memories becuase when you fight or argue about some thing you get upset and think about it multiple times and it becomes very strong memory.

2. Harmonal changes. It is the reaction of the body to certain changes or surgeries. In my case my wife has induced menopas. Which is releasing unwated harmones due to removal of uterus.

It is a very difficult situation while you go through equal pain worrying for life of your family member and face additional stress due to irritated and non supportive patient.

I found out from the local cancer council that it is not an uncommon problem.

Solution: Contact local cancer support agency. they will suggest local clinical psycologist / counsellor. Get an appointment without patient and get some counselling. After first appointment take the patient also to second appointment and get him some counselling.

Regards

CK

RE: Stage four GBM- challenges of post surgery personality changes

by mrs_sim on Mon May 07, 2018 08:50 AM

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Hi Tiffany, 

Did your husband have to undergo radiotherapy? Who else cares for him at home?

RE: Stage four GBM- challenges of post surgery personality changes

by tiffanyjean on Mon May 07, 2018 05:50 PM

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On May 07, 2018 8:50 AM mrs_sim wrote:

Hi Tiffany, 

Did your husband have to undergo radiotherapy? Who else cares for him at home?

He did go through the radiotherapy for six weeks combined with temador.  Our daughter stayed with us for four months mostly because he would not have been able to keep his meds straight.  She drove with him to his appointments because he would not remember what the doctors told him and I wanted to know what was going on.  He was able to return to work full time in August last year.  He continues with the temador 23/5 day cycles and is responding very well.  He gets tired after each round and a slight rash for a few days otherwise no side effects.  At this time he can take care of himself.  Now and then I remind him to take his pills.  I still go to appointments with him if he is having his MRI and getting results so I know what is going on.  He goes to his appointments for his blood check prior to starting each dose of temador on his own.  God bless!

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