PARTNER HAS GBM GRADE IV

wc8943 · New User Joined: 18 Aug 2008 Posts: 4

Hi

I'm new to the forum and feeling miserable as all hell and then selfish for feeling this way.

My partner of only 2 years was diagnosed with GBM4 in early Jan this year. The tumour was 3cm in diameter. He had a resection in late Jan where they said they removed all that was visible. The tumour is in the left occipital lobe. Greg started radiation/chemo (temodal) two weeks after surgery for 6 weeks . He had a month off and then started 6mths of temodal 5 days on, 23 days off. He is about to start the 5th cycle.

Greg was a young fit 59, we both ride motorcycles and spent our holidays and weekends touring on our bikes. He wasn't able to ride or drive from diagnosis until April as the Dilantin and the radiotherapy made him foggy.

He couldnt stand the way he felt on the Dilantin and went off it in april against his surgeon's wishes. He has never had a seizure, the dilantin was a precaution. He seemed to be more or less his old self and we started riding again and he seemed to get some enjoyment out of life. Greg had an MRI at the end of the radio therapy which showed some white matter. They couldnt tell us if it was scarring, tumour or necrosis! Another MRI a month ago shows no change, which is good news.

Residual damage?
He gets confused, his short term memory is shot, (I've had people arrive for dinner and he has forgotten to tell me:0) He lacks motivation. His analysis skills are gone and stress seems to make all of the above worse. If he is in a stressful situation he loses it and i have to bite my tongue and try and calm him down, which I can do most of the time, but sometimes its hard work. He has no appetite and the chemo makes everything taste awful.

The doctors
They just dont seem to get it, there doesnt seem to be a holistic approach to dealing with this problem. They dont tell you about the other side affects of the treatment, that the radio therapy causes damage to other areas of the brain, so for months we have been trying to work out why Greg has no sex drive, have told the oncologist who doesnt have any answers, so you search and search (thank God for the internet) and find out yourself that maybe the Hypothalmus has been affected and it has. Greg no longer makes testosterone. They wouldnt include the testosterone test in his regular blood workups and told us he had to see another specialist. Thankfully, our GP did it for us and he is now on testosterone patches. Lack of testosterone affects most things that make you feel like a man. It causes your skin to become like tissue, inability to concentrate, depression and so on.

Im sorry to sound like such a whinger, but I pretend to everyone that I'm jolly ole Karen and all is good, but I'm tired and fed up. I lost my lover 6 months ago and now I am reduced to being his carer and watching him fade away.

I try and keep things on an even keel and do as much as i can but I have a bad case of feeling sorry for myself today, I just want him back the way he was.
_________________
Karen
Sydney Australia

wc8943 · New User Joined: 18 Aug 2008 Posts: 4

I apologise for my previous post. I should have deleted it.
_________________
Karen
Sydney Australia

brainman · Posted: Tue Aug 19, 2008 2:14 am Post subject: Re: PARTNER HAS GBM GRADE IV

Karen, first, I am not sure what you are apologizing for. But most importantly, I am very sorry about Greg's cancer. My mother died of a GBMIV in 1998 only two months after being diagnosed. I had a glioma grade II in 1992 that recurred as a grade III in 2005. In 1992-1993 I was on chemotherapy too. In 1994 when I turned 40 and everyone was teasing me about being "over the hill" I said that I did not mind being 40 but that I thought someone owed me a year... 1993 was a loss.

My testosterone leave also dropped. However, once the chemo ended it returned to about normal. But mine was chemo caused and not due to Hypothalamus.

I cannot imagine how difficult all of this must be for you. I know it was not easy to care for my mother and then my father during the last months of their lives. You have every right to feel sorry for yourself and to express your frustrations here.

Karen, you and Greg are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat · Posted: Tue Aug 19, 2008 5:45 pm Post subject: Re: PARTNER HAS GBM GRADE IV

Hi Karen
Welcome to our forum, the place where no-one ever expects nor wants to be! This is a great place to come & share your feelings. I am glad you found us, although not in these circumstances!
I am so sorry to hear about Greg's diagnosis & the impact it has had on your lives. Unfortunately, we are travelling a similar path & I can empathise with your feelings, anger, frustration, loss, etc.
I concur with you & Thank God for the Internet too. Well done, on your diagnosis in regard to the Testosterone levels! Congratulations on your tenacity. You will be the best advocate for Greg & this huge responsibility will take its toll on you. Take care!
This forum has been invaluable for me as a family member of a brain tumour sufferer. My Bro was diagnosed in Feb 07, his wife was my friend before they were married, I have a fabulous relationship with Kath & my Bro is my mate. The effects of this God awful disease have been devastating for the whole family.
You will need the love & support of a good friend or family member to sustain you. There is an excellent clinic in Sydney which is run by Dr Charlie Teo-The Centre For Minimally Invasive Neurosurgery-you can google this on the internet if you aren’t familiar. You may find suggestions from this clinic on a “holistic” approach to Greg’s disease.
Please keep in touch here, we will support you always & it’s a great place to come to RANT & RAVE!
My prayers & thoughts are with you both.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

artaran · Posted: Tue Aug 19, 2008 9:44 pm Post subject: Re: PARTNER HAS GBM GRADE IV

Please don't apologize for your post. We've all been down with this disease. This is one place where you should feel comfortable to whine!! And we understand. My son is similar to your partner in that he has never had a siezure either. The doctor put him on dalantin for only about a week after the surgery as a precaution. Then they pulled him off saying that it was unnecessary once the swelling dropped because he'd never had a surgery. It doesn't really prevent a first siezure much, so your partner may have been wise to go off of it, especially if it was affecting him. Don't hesitate to get a second opinion, if you are unsure of your treatment plan.

Doctors are different, and some, frankly, don't know that much about brain cancer because it is fairly rare in comparison to many other diseases.

My thoughts are with you.

Arleen

wc8943 · New User Joined: 18 Aug 2008 Posts: 4

Jim, Angie and Arleen

Thank you so much for your kind words and allowing me to vent. I'm normally the rock, but I feel so helpless at the moment. It's weird when you are the one that normally can fix things and then this hits you. I can't fix it.

I avoided forums initially as it was all just so depressing, people losing their loved ones in such short periods of time, its heartbreaking. And then you wonder what is in store for you, how bad will it get, will I be strong enough.

I read your stories and I'm crying as I write this because I am overwhelmed by the immense compassion and caring you have for others even though your own lives are so deeply affected by this disease.

Thank you again for being so kind. Btw, I'm not such a misery guts today, thank goodness these things pass.

cheers
_________________
Karen
Sydney Australia

jenugl · Posted: Thu Aug 21, 2008 4:25 am Post subject: Re: PARTNER HAS GBM GRADE IV

Hi Karen. Boy!! You could be writing my story, except my husband Andrews was on the right side and 4 cm. I so understand what you are going through. Andrew was first diagnosed in May 06 and they resected all tumour (they said they couldn't see anymore) anyway we were told he would have about 2 years. Well here we are 2 and half years later and still no sign of any tumour. He still has some bad days but they are getting few and far between. Compared to the early days he has improved 80%. It does take it out of you and the range of emotions that you go through is unbelievable. I too showed the in control tough side while we were going through it all but when I was by myself it just about broke me some days. I hope and prayer that Greg has a great outcome and that things settle down once he is off medication. Hang in there and reach out whenever everything gets too much. Andrew had a great attitude to most of it, although he got quite sick while on chemo and meds but after he came off them, all seemed to start to get better. Love and thoughts to you both.
_________________
Love to all. Jen.
_____________________________

Partner of GBMIV survivor - so far.

http://cancerforums.net/viewtopic.php?t=9502

Christy · Regular Joined: 17 Jun 2008 Posts: 10

Karen,I am 47....GBM 4......went thru treatments your partner has, went to MD anderon in Houston TX, earlier this month, have new chemo regimein....I hated the 23 days, Temodar, 5 day off stuff...only did one cycle.....have high hopes for new plan.......drs, very positive at md anderson, I go back in Oct to see if anything has changed.

[quote="wc8943"]Hi

I'm new to the forum and feeling miserable as all hell and then selfish for feeling this way.

My partner of only 2 years was diagnosed with GBM4 in early Jan this year. The tumour was 3cm in diameter. He had a resection in late Jan where they said they removed all that was visible. The tumour is in the left occipital lobe. Greg started radiation/chemo (temodal) two weeks after surgery for 6 weeks . He had a month off and then started 6mths of temodal 5 days on, 23 days off. He is about to start the 5th cycle.

Greg was a young fit 59, we both ride motorcycles and spent our holidays and weekends touring on our bikes. He wasn't able to ride or drive from diagnosis until April as the Dilantin and the radiotherapy made him foggy.

He couldnt stand the way he felt on the Dilantin and went off it in april against his surgeon's wishes. He has never had a seizure, the dilantin was a precaution. He seemed to be more or less his old self and we started riding again and he seemed to get some enjoyment out of life. Greg had an MRI at the end of the radio therapy which showed some white matter. They couldnt tell us if it was scarring, tumour or necrosis! Another MRI a month ago shows no change, which is good news.

Residual damage?
He gets confused, his short term memory is shot, (I've had people arrive for dinner and he has forgotten to tell me:0) He lacks motivation. His analysis skills are gone and stress seems to make all of the above worse. If he is in a stressful situation he loses it and i have to bite my tongue and try and calm him down, which I can do most of the time, but sometimes its hard work. He has no appetite and the chemo makes everything taste awful.

The doctors
They just dont seem to get it, there doesnt seem to be a holistic approach to dealing with this problem. They dont tell you about the other side affects of the treatment, that the radio therapy causes damage to other areas of the brain, so for months we have been trying to work out why Greg has no sex drive, have told the oncologist who doesnt have any answers, so you search and search (thank God for the internet) and find out yourself that maybe the Hypothalmus has been affected and it has. Greg no longer makes testosterone. They wouldnt include the testosterone test in his regular blood workups and told us he had to see another specialist. Thankfully, our GP did it for us and he is now on testosterone patches. Lack of testosterone affects most things that make you feel like a man. It causes your skin to become like tissue, inability to concentrate, depression and so on.

Im sorry to sound like such a whinger, but I pretend to everyone that I'm jolly ole Karen and all is good, but I'm tired and fed up. I lost my lover 6 months ago and now I am reduced to being his carer and watching him fade away.

I try and keep things on an even keel and do as much as i can but I have a bad case of feeling sorry for myself today, I just want him back the way he was.[/quote]
_________________
I'm too sexy for my hair
http://cancerforums.net/viewtopic.php?p=36016
http://cancerforums.net/viewtopic.php?p=41876

wc8943 · New User Joined: 18 Aug 2008 Posts: 4

Hi All

Greg and I went riding our motorcycles on the weekend. He was angling not to go, cold weather etc, but I figure its the one thing he really loves and wont be able to do for much longer, so I cajoled him onto the bike on Saturday morning. His thermostat is truly buggered and he is always freezing, so three sets of thermals, and instant heatpads stuck all over his chest and back warmed him up a treat. For the Aussies on the forum we stayed at a little farm south west of Oberon between the villages of Bigga and Binda.

It really was the tonic we both needed, Greg was so happy (thanked me on Sunday for making him go) and now all of our cobwebs have been blown away for a while at least.

Christy, I wish you the best of luck with the new treatment.

Jen - your story about Andrew improving 80% has made me feel so much better. Just to feel that there is hope that things will improve helps, as you know sometimes its, well, just grrrrrrrrrrr.

love and best wishes to all
Karen
_________________
Karen
Sydney Australia

brainman · Posted: Mon Aug 25, 2008 6:58 pm Post subject: Re: PARTNER HAS GBM GRADE IV

Karen, I am very good and happy weekend. THAT is what I encourage anyone do to... do those things that will bring joy in the present and great memories for the future Smile

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

jenugl · Posted: Tue Aug 26, 2008 6:42 am Post subject: Re: PARTNER HAS GBM GRADE IV

Hi Karen, fantastic news that you both got out and about (even though it was cold). I know what you mean about using the thermals (I spent 10 years in Lithgow) brrrrrrr.... but absolutely beautiful country around there. I can just imagine how much your husband enjoyed it. One of the things that Andrew's mates did after his treatment, was organise a ride with just the four of them. Many years ago they all set of for a motor bike trip around Australia and used to ride quite alot. Andrew hadn't been on a motorbike for years and it was something they all said they would do again, but like a lot of things they never got around to it - well this sort of thing changes your perspective. Get out and enjoy everything you can. Like Jim said - enjoy life to the full and create beautiful memories. Thinking of you both. Love Jen.
_________________
Love to all. Jen.
_____________________________

Partner of GBMIV survivor - so far.

http://cancerforums.net/viewtopic.php?t=9502

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