GBM:looking for fellow travellers.
Sat, 08/01/2011 - 16:12
I am looking for fellow travellers on the GBM path to discuss things with. I am happy to provide whatever support I can as I am 4 years down that path myself.
Sun, 30/01/2011 - 11:32
#2
Re: GBM:looking for fellow travellers.
Hi Helen,
My father is 3 years into his GBM journey. I have only just joined this forum because as a support person I am finding difficult to talk to people who dont really understand what is happening. As the "strong" one in the family, I am feeling a little lonely and struggle to get the truth from doctors anymore.
I would love to know about your journey, and how its going.
Melissa
Wed, 30/03/2011 - 23:02
#3
Re: GBM:looking for fellow travellers.
Hi Helen,
You are the reason I joined. My husband was diagnosed with Stage 4 GBM in January this year. He was flown to St Vincents in Melbourne for a debaulking (removed approx. 20%) and then we were lucky enough to get an appointment with Charlie Teo in Sydney who removed over 95%. We believe that he has given us our best chance. My husband is 34 years old and we have a 16 month old son. We are very early in our battle but are determined to beat the odds and are going for a long life. We are up to our 3rd week of chemo and radiation and my husband doesn't have any side affects yet. He has even returned to work a couple of days. I would love some advice or would like to hear your story.
I hope to hear from you, Amy.
Mon, 25/04/2011 - 22:03
#4
Re: GBM:looking for fellow travellers.
How is your husband progressing ?
My husband too has a GBM level 4 , diagnosed in April 2010.
Jo
Tue, 17/05/2011 - 23:55
#5
Re: GBM:looking for fellow travellers.
Hi I am new here too. Husband is 8 months into the GBM journey and I am exhausted. He is very difficult to live with and our children are doing it tough. How do you keep going when it is so hard? He is totally obsessed with some of his physical problems it is all he talks about and he doesn't seem to care about any of us. It is very lonely as he won't talk about any thing to do with the reality of the future he is convinced he will get well regardless as to what docs say and the reality of his decline. Any advice?
Sat, 21/05/2011 - 11:01
#6
Re: GBM:looking for fellow travellers.
Hi Exhausted,
I'm not sure what to say. Dad was very confident that he would get better and NEVER wanted to talk about the future. But i guess that was a family thing too..... my mum and my brother didnt want to talk about the future either. Dad and I talked about stuff sometimes - I was well aware of what was coming and wanted to discuss some things with him, but the talks were short - he really didnt want to talk about it at all.
Now, he's still in Pallitive Care, its been over 4 months and he's decline is painfully slow. He's not able to talk, and NOW, it seems to all of us, he wants to tell us things - he holds us and crys alot. We know what he's trying to say.....
Advice? IS the hospital your recieving treatment from offering any support groups? My dad is in NSW and was being treated at the RNSH and they have a GBM support group. My mum told me the other day she only wishes now that they had gone, and maybe by being around other GBM patients they may have discussed things about the future. I have to agree.... I pushed for them to go, but Dad didnt want to. Its SOOOOO hard - you need some support too, and you will be able to get some, but you need it NOW, not like my mum when dads in pallitive care. Maybe if he's around others who are dealing with the same issues, he can listen, support them, encourage them and at the same time his awareness of whats around the corner will gradually develop?
Its just SOOOO hard. This has been my experience with dad, and everybodys journey is different. I dont know if any of what i have said helps, but i hope somehow it has.
Take care,
Melissa
Mon, 23/05/2011 - 23:22
#7
Re: GBM:looking for fellow travellers.
There is a trial of a vaccine being undertaken at phase 2/3(?)
(which from an old posting in Feb 2010 by the original research doctor indicated that some GBMs have a particular protein and this vaccine has been designed for and so far have had success at starving some of the tumour - my expression so maybe wrong terminology) I believe that the protein could be in up to 40% of GBM sufferers
Pfizer was a leader in the trails but returned the rights of rindopepimut (CDX-110) the therapeutic cancer vaccine,in Sept 2010, to Celldex Therapeutics because the drug is “no longer a strategic priority” for the company, raising questions about the viability of the program.
Note that I have also just put this comment out in the general comments section
"Does any one have any updated knowledge of the trials been undertaken in America of a vaccine CDX-110 for patients with Glioblastoma Multiforme (GBM) brain tumour
latest I can access is 24 Feb 2011 by Stanford Medicine
It seems to be undertaken in America only"
So there is a trial at least being undertaken, and from my perspective, the results look mixed but still only infer some longer life, and only for some people with a tumour with the protein.
Being America I guessing that if it does get up and running then it will be expensive. There may be some hope but for who it would be suitable, whether it works and whether it would be available in time .....
Is any one has insights into all this?
Regards to all
Geoff
Mon, 04/07/2011 - 00:05
#8
Re: GBM:looking for fellow travellers.
I have recently been diagonsed (30th june 2011)
I am a 28 year old female.
News has been very confronting and so has the information I have read.
I have recently undergone surgery (24th june 2011)
which all my tumor was unable to be removed due to where some of it was (on my speech) Frontal lobe.
Path results confirmed GBM .
About to start my treatment plan, amm very intresed in discussing this with someone, also does anyone know of support groups for this brain tumor anywhere near the RPAH in Sydney?
Fri, 15/07/2011 - 11:27
#9
Re: GBM:looking for fellow travellers.
Hi
My husband was diagnosed with GBM on 27/06/2011 so looks like we are going through the same path at the moment. He is going to start radio and chemo probably next week. If you need anything please let us know.
Wed, 27/07/2011 - 22:29
#10
Re: GBM:looking for fellow travellers.
Hi CatBye,
I was in your shoes 12months ago when I was 27. My tumour was removed about 95%. It was also in the speach section. 3 days after surgery when results came that the part of my brain surrounding the tumour was malignant but slow growing. I packed up to leave hospital 3 days after surgery. Too soon it turns out because later that night I tried to talk and only gibberish came out. After not being able to make any sense my Dad took me back to hospital and they explained that is completely normal. They called it dysphasia. (wish they told me that so I didn't freak out when I got home)
I still have these types of lapses 1 year on. It was 10 times a day at the start and now it would be max once a week. You are so amazing to be on this site so early. You are amazing. I couldn't work a computer for 1 minute without getting a splitting headache 2 months after it all happened.
Good luck to you. Take care of that head of yours.
Katie
Mon, 04/07/2011 - 22:44
#11
Re: GBM:looking for fellow travellers.
Hi CatBye
warmest hugs
I dont know of support groups except for this site. Suggest to check with your case manager at hospital.
I assume that that your GBM has driven a huge spike into your life outcome.
The following is a lot of my experience
The initial diagnose is gut reaching experience, then the time to come to terms with the outcome. Grief and loss from what life has thrown at you, you can get any and all different emotions at any stage - anger at god, anger at people, depression, trying to cope, having to deal with people mostly you end up making it alright for them to feel comfortable not guilty about they are living you are dying.
My partner Lorraine is maybe similar, they removed 95% of the tumour which I think is typical with the operation. The doctor she had - Dr Allan and the Prince Alfred surgeon Adam were excellent. Adam especially supportive and frank, came and sat with Lorraine and spoke of the tumour its aggressiveness and her life span available - he believes that she can get past Xmass providing that she does the radiation and chemo basically doubling her life span but there are no guarantees
The treatments as I understand - different people will react different ways Some though few make it to 5 years, most others shorter, I think 15 months
Lorraine has finished her radiotherapy she was initially concerned for a mask that is made to wear for the radiotherapy machine - so that you keep still during the process - she has claustrophobia - she got the operators to talk to her during the process to help distract her mind. If you have favourite music can get it piped into room as you get the radiation
Prior to operation Lorraine had difficulty with speaking words simple words to like whats this thing its an arm (due to tumour)and has remained since - not sure if that is permanent as just after operation i believed that a lot of her language returned. But with the radiation and chemo it has lessened I am not sure but that may have been causing it. I suppose that I am hopeful.
She is just finished her 2nd round of the chemo (oral form)
She has had some low energy and bad days some times a bit nauseous,
fragile - more so a few days at the end of that round of chemo
A big issue is drivers licence it has a big impact on your independence having to rely on others to get around speak to your surgeon next time
I believe that 3 months minimum after operation (then reassessed?)
Do you have a belief system that works for you - it can help to get through some of the dark days There are a lot of supportive people on this site, some you may get close to I hope you do - it helps
There is not a lot of information on the quality of life that I have come across and what there is available. There is another thread on this site titled
Gbm grade 4 brain tumour
suggest when you are ready to read it
gives some insight of what can be with the progression of the gbm tumours
there is another site that i was refered to again when you are ready (if that is ever possible)
http://www.brainhospice.com/EndStageLandmarks.html
http://www.brainhospice.com/DadsStory.html
Also Beyound Blue has some leaflet titled Brain Tumours, depression and anziety disorders
biggest of hugs
Geoff
Mon, 01/08/2011 - 20:59
#12
Re: GBM:looking for fellow travellers.
Hey All
I am so sorry to here of your diagnosis whether it is you personally or a close family member/friend.
My partner had a GBM Grade 4, he was diagnosed in April 2010.
I am also looking for support on here. I am also happy to offer support, advice on managing your GBM, as to what worked and did not work for my partner.
Thu, 25/08/2011 - 22:54
#13
Re: GBM:looking for fellow travellers.
GBMpartner has past the 3 month mark of having chemo. New MRI scan Oncologist reports tumour has significantly returned ..............
maybe that the image just could be the activity of the chemo but unlikely...............#$@!!!!
Our dog 14 years old and slowing down in physical abilities, collasped while on an easy walk 3 weeks ago, he got worse that day, he seems to be paralysised. saw vet - tumour /slipped disk or bleed on his spine at the base of his neck. Two weeeks later he seems to be improving - he was walking like being highly intoxicated, staggers, falls on face, side or where ever.
Last Monday he collapsed again completely paralysised there is no muscle response in his legs, seems worse todate, no improvement since Monday appears permanent. The spark seems less in him, he looks like he is resigned ...going we are distressed Tomorrow we take him again to the vet, she is good and caring. It will probably be his last trip....
Thu, 25/08/2011 - 22:54
#14
Re: GBM:looking for fellow travellers.
GBMpartner has past the 3 month mark of having chemo. New MRI scan Oncologist reports tumour has significantly returned ..............
maybe that the image just could be the activity of the chemo but unlikely...............#$@!!!!
Our dog 14 years old and slowing down in physical abilities, collasped while on an easy walk 3 weeks ago, he got worse that day, he seems to be paralysised. saw vet - tumour /slipped disk or bleed on his spine at the base of his neck. Two weeeks later he seems to be improving - he was walking like being highly intoxicated, staggers, falls on face, side or where ever.
Last Monday he collapsed again completely paralysised there is no muscle response in his legs, seems worse todate, no improvement since Monday appears permanent. The spark seems less in him, he looks like he is resigned ...going we are distressed Tomorrow we take him again to the vet, she is good and caring. It will probably be his last trip....
Thu, 25/08/2011 - 22:54
#15
Re: GBM:looking for fellow travellers.
GBMpartner has past the 3 month mark of having chemo. New MRI scan Oncologist reports tumour has significantly returned ..............
maybe that the image just could be the activity of the chemo but unlikely...............#$@!!!!
Our dog 14 years old and slowing down in physical abilities, collasped while on an easy walk 3 weeks ago, he got worse that day, he seems to be paralysised. saw vet - tumour /slipped disk or bleed on his spine at the base of his neck. Two weeeks later he seems to be improving - he was walking like being highly intoxicated, staggers, falls on face, side or where ever.
Last Monday he collapsed again completely paralysised there is no muscle response in his legs, seems worse todate, no improvement since Monday appears permanent. The spark seems less in him, he looks like he is resigned ...going we are distressed Tomorrow we take him again to the vet, she is good and caring. It will probably be his last trip....
Sun, 02/10/2011 - 20:53
#16
Re: GBM:looking for fellow travellers.
Hi all,
I am the mother of a 34yo son with a grade 4 GBM. It was hard to cope with the news, especially as not much was told to me, only to his partner,and I was under the impression that because most of the tumour was removed, that meant my son was ok. How little I knew!
My son was diagnosed with GBM last October, 2010. He had the tumour removed and was given radiotherapy,and then chemo for 6 months. Three weeks after the chemo finished, he had an MRI, and was told that the tumour had grown back, although only about a third the size of the original. Another operation, and now he is participating in clinical trials of the drug Avastin as well as another chemo drug, not sure of the name, at the Royal Melbourne Hospital.
As his mother, it has been devastating for me to see my son suffer with such a rotten horrible disease, and I am helpless to do anything about it...I can't "kiss it better" as we mothers do when our children are little. I found that, when the second tumour was discovered, my son and his wife were almost hysterical and panicky and didnt know where to turn for advice etc. It was seeing them like this, with my daughter-in-law crying on my shoulder and my son looking at me with that look in his eyes that said "help me, Mum", that I decided there and then to get a support group in our city going, for brain cancer patients and their families and friends.
I was lucky enough to enlist the help of a lovely lady who had actually nursed brain tumour patients at the RM for a long time, and had the experience, the passion and the compassion to see what I wanted to do, and to be able to help me. Her contacts have been invaluable, and we are now at the point where we will be affiliated with the Cancer Council of Victoria and be part of their support group network in this state.
At the same time, my son's mother-in-law is organising a fund raiser to get the money to continue with the treatment once the trial is finished in eight weeks, so my son is a lucky young man to have three strong women on his side, and by his side, through such a painful journey.
The thing that helps us all the most is being able to do something useful and keeping a positive outlook, although that was almost impossible for me for the first few months as I was in tears for most of the time and unable to function at times, my grief and my fear and my anger were so great. I have since been prescribed antidepressants and this has helped me to be strong again and to get this support group off the ground. I never once allowed my son to see me like that, and that was wrong because, once I was strong enough to be able to tell him, I found that he knew anyway.
I would like to say that I really feel for the people who are "walking the path" with loved ones with GBM, that its hard to keep positive and hopeful, but it helps if you have the information you need, to know what you and your loved one are dealing with. That is the problem I had, and I wouldnt wish it on anyone!
Thu, 24/11/2011 - 14:11
#17
Re: GBM:looking for fellow travellers.
Just wondering how everyone is doing so far. Hope everything goes well. 
Thu, 24/11/2011 - 14:54
#18
Re: GBM:looking for fellow travellers.
Hi all,
I have been away from cancer connections for a while now.
My hero, my father, took his last breath at 6.46pm on June 21st. He fought his GBM for 3 years and 2 months. I have a profound and deep whole in my heart and a burning anger in my mind over everything that has happened. His treatments, his decline, his care, my loss..... they all turn constantly in my mind.
i wish you all the love, care and kindness I can send to you.
Missy
Sat, 26/11/2011 - 17:15
#19
Re: GBM:looking for fellow travellers.
MissyM, sorry for your lost. Three years and two months is a pretty good time though from my short understanding of GBM. My partner is only a bit over 4 months in after his brain surgery and diagnosed. I do wish he will be with me for a long long time.
Hi Helen
I hope that someone gets in touch with you. It is very helpful to us all to be able to connect with people who have been down a very similar path to ourselves.
Julie