GBM Brain Tumors

[Groenevelt68]

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 bowels/body. 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

[Groenevelt68]

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

[peanutz]

If I followed everyone's post, Sandra's son, Hammy's husband, and my partner would have MRI scan on this Friday. Three people in three places will have a scan for the same beast on the same day. That's three time nervousness but I hope we have three times as much luck!

[rarsie]

Hi Hammy, MRI no good the tumor has gone deeper into the brain, can stay on the Chemo. Ongoligist said Chemo must be helping otherwise there woulkdve been more growth, cant operate as it has gone in. hope you guys have better results and must agree I would hate the waiting the few hours we do wait is long enough, bit at loss now cant really work out how I am feeling, there are many emotions and having to deal with them all at once is all too much, but as I always have believed we have had our son longer than may and he hasnt had much of a disability, we have been blessed All the best to you and hubby keep in touch Regards Sandra

[Hammy]

Hi Sandra Am so sorry to hear your news I can only imagine the different emotions you all must be going through and am praying that the chemo keeps things stable for longer. Next week this time we will have our results the waiting has been terrible and I can't wait to know either way. Like you I am just greatful that to date Rich hasn't had to endure to many disability's and mainly he is living a good life. Please stay in touch and know that you are all in my thoughts and prayers. Luv Kim

[Nicole_in_Melbo]

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

[peanutz]

Hi Nicole, I come across the clinical trial that you mentioned. We didn't go down that path mainly because one of my partner's tumour has grown rapidly and there's 50% chance that we would get to try the LY2157299. He also seemed unwell at the time but now looking back to his condition then and now I think he wasn't so bad. He had problem with his speech and appeared to be quite weak then because of the 2nd tumour has grown at the same time as him working with his Dr. to lower dosage of Dex. His speech got better for a while when he got back to higher dose of Dex but has been declining again probably due to tumour. He doesn't want to increase the Dex to see whether it will fix this problem this time so not much I can do to prove. Anyway, a few NOs suggested us to go with Avastin. Yes, there is a big cost involved and there is no guarantee that it will work. We were told it could cost up to 30K and we ended up paying around 10K. Our NO said Roche has changed their patient assistance program and we have to pay for 2 doses instead of 4-6 doses (I never really know how their program worked in the past). Your mum would be smaller than my partner so it should cost less. My understanding is this drug is not a magic drug. It could work brilliantly for some people while it does nothing to others. We have a scan tomorrow to see which group my partner is in. Good luck and take care.

[Nicole_in_Melbo]

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

[peanutz]

Hi Nicole, just curious... does your mum go to RMH?

[Nicole_in_Melbo]

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