GBM Brain Tumors

Hi Cathy
My name is Terese and 20 months ago my husband was dx with a 3/4 astrocytoma. The tumour is inoperable and the biopsy showed it to be a grade 2 but the imaging indicated it was a grade 3 so it was treated as a 3 but as he declined they decided it was a 4. He is doing very well at the moment. His treatment was biopsy,radiation with concurrent chemo followed by 6 months of 5/23 chemo. During his first 5/23 chemo he declined rapidly and it looked like the fight was lost so they tried him on Avastin and he responded very well. He did 13 months of Avastin and has been off any treatment for the last 14 weeks and all seems very stable at the moment. He will have his next mri in early July. He is 52, it is tough for you being so young. Happy to chat any time, send me a private message if you like.
Hugs Terese.

Hi Cathy,
I'm sorry to hear your story. My husband has a GBM Grade 4 as well. He was diagnosed March 2011. He's 34. We have 3 kids, Sergio,5; Charlotte,3; & Hugo,18mnths. He's had 3 surgeries (last one on Friday). He's had chemo and radio at The San Hospital.
Its up and down, and is very tough on the family. But we're willing to fight it. Its hard for him to remain positive. And I find myself crying at the drop of the hat.
Best wishes for your journey.
Kate

Hello,

It has been awhile since I have been on the forum site.

My husband Pieter passed away on the 6th June, almost 12 months to the day we were informed that he had GBM stage 4.

I will continue to connect with the site, if any one wishes to chat..........

Carolien

Hello Peanutz,

In March we had the MRI which show the small spot growing on the left temporal lobe was indeed a tumor (having tripled in size since the Jan MRI).
The surgeons indicated that surgery was not an option, but we could do radiation. The specialist indicated that Pieter could lose abilities in area of communication. Within weeks Pieter lost the ability to read, write and verbally communicate. We were informed to put up the Dex (which was working, as we could see the improvements), but eventually the improvements stabilized then we noticed a decline (thinking it was the tumor).
I watched Pieter slowly lose the ability to sit, stand and walk, called an ambulance to assist us to get to appointments. Once at the hospital (1st May), Pieter was placed in palliative care and we were giving three days. The doctors were only going to give Dex and morphine, all other meds removed. Then Pieter started to respond, it was found that there was an error in the meds and accidentally Pieter had no Dex for a few days (Dex was mixed up), which allowed for the swelling and tumor to have fun.
Once Pieter was out of danger, we were transferred to local hospital for a week before being allowed to go home.
At home Pieter had the ability to use the commode, and sit up, watch tv and occasionally chatted (not always making sense). Then Pieter started to decline, difficulty in standing up, then difficulty in sitting up, followed by difficulty in rolling/moving in bed (so every four hours I would move Pieter). This was then followed by difficulty in swallowing foods (meds were crushed and placed in thicken fluids), in the end even puréed fruit was to thick and had to be thinned down so Pieter could swallow.
Pieter' breathing over the past two weeks had become erratic (normal, deep, shallow, mix of all three). On the night of the 5th, Pieter was going between shallow breathing and deep breathing, but just before 5am on the 6th June I woke (not that I got much sleep, listening to the breathing) due to a change in the breathing. Pieter was awake, have turned on his back so he could breath, so I got my youngest daughter up and we made Pieter comfortable (with the use of hospital bed we obtained through DVA) by placing him in a sitting position, which allowed the lungs more room to expand.
My daughter and I sat with Pieter, talking to him, giving him cuddles, telling him it is okay.
There was no pain, fear or panic in his eyes, his took his last breath at 6am.
Pieter is finally at peace, the tumor can now do no more damage.

For me:- I have been trying to keep myself busy (helps dull the pain and loss), when it is quiet then more often than not the tears flow. The tears come and go through out the day and night. Sleep is not easy to come by, the emptiness in both my heart and the house is felt keenly.
I talk to him every day and have continued to write in the diary I started last year about our journey.

Tidying up the kitchen (putting away all the meds and equipment), washing the bedding, all reminders.

The funeral is on Wednesday 13th June. All the things that have to be done is amazing.

For me personally, I have thought about what I will do, it changes a lot, I will have a short time where I can reflect over what my future holds, then I will have to find work and get back on the wheel of life (not sure whether I can do it in one go, or whether it will take many goes, to get back into the swing). My middle daughter is getting married in July (a point to aim for at this point in time).

It is a huge head spinner, heart wrencher, life changing experience.
I miss touching him, kissing him and listening to his voice. I know the pain will slowly go away but for now........

Thank you for your support.

Hello all,

I am taking one day at a time, within the roller coaster of grief.
Recently had a job interview (but did not get job), will continue to apply for and find a job.
I also have started back at uni, giving me something to do with my mind and hands.

Lorraine, as for the cancer moving through the body, GBM is only a brain cancer, as the only place where Glio cells are is in the brain. You know the old saying that we only use 10% of our brain, well the rest tend to be Glio cells which help the brain function. These cells in some people (our loved ones) misfire and form GBM tumors.
The black stools, I agree do indicate old blood, which means there is an issue with bowels, which will require investigation. It can be because the tumors in the brain have been blocking or interfering with functions in the brain. The reason our loved ones have so many issues with their bodies is due to the impact of tumor in brain (moving the brain around to allow the tumor to grow, not a lot of growing room in the brain, so the brain squashes itself to make room, which then impacts on the body). Apparently there can be secondary cancers associated with GBM which can come out due to treatment (radiation and chemo), also the chance of another form of brain cancer can develop.

Kim, I understand the feeling, there will be more times in the future that you will feel the same. All I can say is find the positive (no matter how small, a smile, a hug) every day and use the positive as a lifeline, I found if I allowed to much to cramp my mind I would become empty, and overwhelmed with emotions, I found when I looked for and enjoyed the positives that life (for the short term) was good. I enjoyed every moment with Pieter, I made sure I was always happy (that was hard and a few times can crashing) when I was with him. Even when Pieter was dying I spoke in a positive way (all about love, how we would be okay) even though my insides were screaming (this is not happening). This is all about making the journey for our loved ones as happy and pleasant as possible.

I agree that this is a shitty cancer, just taking away the ones we love, with minimal opportunity for remission, to give us the opportunity of time. You all are in my thoughts daily.

All my love
Carolien

Hello Rain76,

Just going through the comments, and noticed the one on Dex and how it stops working.
Actually the reason why it seems to stop working is due to increases swelling in the brain.

So what I found was when Pieter abilities started to drop, I would chat with oncologist and we would increase the dose. I was lucky as the oncologist allowed me to work with Pieter in regards to monitoring his abilities and adjust the Dex accordingly. With every change in dose I would discuss with oncologist at next appointment.
We were never happy in the beginning with Dex, as when they first introduced it, it was to high and effected Pieter which he did not like (mentally). Then when then non steriode based anti-inflamm did not work we were highly encouraged to try Dex again. We started with a low dose which assisted within 24 hours.

In March when we were told about the third tumor (no surgery), we were told about the possibility of loss of communication skills, when it happened Pieter was on 1mg Dex, we took it to 4mg with good results, then to 8mg with even more results, it was when we went to 16mg that we had the med error that placed Pieter in hospital. In hospital Pieter had no movement at all, no speech, no abilities, we were told to say our good byes. The medical staff only used morphine for pain and Dex (not realising that this was the drug that had been omitted, due to error). Within 24 hours of Dex going back into Pieter he started to improve, in 48 hours he was talking and trying to walk. Once doctors realised this they replaced all other drugs as well.
I know from personal experience the Dex does assist with keeping the swelling down, to keep the abilities going.
In time the tumor will beat the effects of the Dex as the swelling increases, as it did with Pieter. We finally decided to stop increasing the Dex when it hit 20mg.

The Internet indicates that there is no max usage of Dex, and in some countries it goes as high as 30mg, all Dex is, is an anti-inflamm and brings down the swelling. Yes, it can be addictive but I feel in our case with GBM that is not an issue.

You know your partner, you know what they are like, and only you will notice if the Dex assists with improvement if you wish to try and increase the dose (with discussion of medical staff). If it helps to improve quality of life (even for the short time) then it is a bonus. Dex is not to be abused, but can assist with guidance.

Love & Hugs

Carolien

Hi all, I have joined this site and what a wonderful
support network seems to be going on here.
My mother was diagnosed in December 2011
and has had surgery, radiation and five months
of 5/23 chemo. We just found out on Monday
that last scan shows what they are pretty sure
is a new tumour on the right side of her brain.
She is having a PET scan tomorrow to confirm
this.
Our NO has mentioned a clinical trial for LY2157299
plus lomustine or lomustine plus placebo
therapy. We are not sure where to go with
this. Ive also been reading a lot about Avastin
but that there is big cost involved.
Any suggestions, experiences, advice would
be greatly appreciated. I'm feeling very
confused and overwhelmed by all of this.
Nicole

Thankyou Peanutz for your feedback. I dont think we will go down the clinical trial path either, mainly because of the uncertainty as to which treatment she would actually receive. 2 in 3 chance of receiving the LY2157299 but still doesnt feel like we would have any control over her treatment. Luckily so far mum hasnt had to take Dex so I guess thats a good thing.
Hope your partners scan went well!
Nicole

Oh Hi, its Nat isnt it lol? Ah no shes being treated at the Austin Hospital. Your partner goes to RMH?

Hey everyone Havent been on here for ever I have a GBM and had two surgerys have had radio and today Ive popped by last chemo YAH and tomorrow Im jumping on plane to Broome I think the meadical profession are fantastic especially since I havent felt this good in 3 years They have given me a good quil of life at the moment. Havent had a seizure since last novemeber berfore my surgery in dec2011 And Im DRIVING again another milestone that I have over come Im very positive love to everyone and their families espec their families its hard on them

Hello Everyone, I am an older sister of a 25yr old brother who was diagnosed with GBM in March,2012. He had lost most of his site due to where the tumor was and has done all 3 treatments (Surgery x 2, radiation and chemo). Last week he found out the tumor has come back in a different part of the brain and it's to deep to operate on. He cannot do radiation again due to the risk of damage to the brain.
Our options are clinical trial with a new drug called LY2157299,chemo or Avastin. I also read something about a DCA drug that was shown to reduce tumor in mice. Has anyone heard or tried this drug? We are undecided about what treatment to do but need to make a decision quickly.
Thank you

Hi everyone,

I'm new here, just registered today in hopes of gaining a better/broarder understanding of GBM and therefore in turn being better able to understand and care for my Mum.

Mum is 55 years old, diagnosed on 17th September with a Brain Tumour, removed (Neurosurgeon said complete removal) on the 21st September 2012.

Mum's biopsy results came back as GBM, unsure of which stage but I believe it to be the later stages. The tumour was 5.3cm in width on the front right parietal lobe.

I am keen for a chat with anyone that is willing. I'd prefer private messages if possible as I don't know if Mum is using this forum or not at this stage.

Drop me a message if you have a bit of spare time, I'm a stay at home Mum of 2 kids so have plenty of time on and off during the busy day to reply.

Thanks, sending love and strength to you all, our journey with GBM has just recently begun, from what I read some of you are years into it and others now here to help everyone else after your loved ones passing... I for one am truely thankful for any support.