GBM Treatments - what to expect ($$$)

[storm]

Hi Nat Yes Dennis is a problem. His stubbonness is bringing high frustrations for you. When are you due for the next meeting with oncolgist? Cant change him so please look after yourself (time out exercise what ever is best for you) Nat you are a good person doing the best you can with a presently stubbon obstical. Ps I am also guessing that he is scared of confronting further bad diagnoses and it is such a crappy disease Warmist Hugs Nat Geoff

[peanutz]

Hi Geoff, Bad news, the tumour grows back. The NO gave quite a depressing prognosis. Not sure what to do now. 😞

[storm]

Oh f_ ck Nat Oh bloody f_ck. Its a sh_t of a cancer with little to look forward to The anger with nothing to strike against, the loss of hope as you get thrown another thorn After Lorraine gets back similar results of the tumour, its consequences becomes real again, my trying to come to terms as its "reality" comes in to roost. Feeling of hopelessness as all I do is witness as my partner slowly leaving me, my anxiety my grief. the alonenes and isolation. Well they are a part of my experience Hugs for you Nat Big hugs for you

[peanutz]

Hi Geoff, Thanks for the big hugs, just what I need! I'm feeling better now, engaging myself with all the reading about treatment options for recurrent GBM. I don't expect to discover another Lorenzo's oil but at least I will have something to refer to when we discuss with the doctor. We are getting a 2nd opinion next week. I don't like the fact that the current NO doesn't seem to provide a few options but only one that I happen to find his name listed on a published research paper. I don't know if every NO is like this but I will keep looking for an open minded one. We got nothing to lose! Take care, Nat

[Groenevelt68]

Hello All, My husband was diagnosed with GBM in June 2011, having surgery, radiation and chemo. Currently coming up to cycle 7 of stage two of chemo. We had a MRI last week and wait with baited breath for Tuesday for the results, as the previous MRI in January indicated a new growth (but specialist disagreed to whether it is a new tumour or a side effect of radiation) at the time the growth was 1.2cm in size. I am hoping that all is well with you and family at this time, along with sending my thoughts to you all. It is definitly a kick when receiving the diagnoses of GBM. With my husband there was no warning, just one day woke up with stroke like sysptoms and was sent to hospital from work, there they had fun with bringing down blood pressure (as it was through the roof), and a CT scan with contrast showed that there were three cysts (one of which started to bleed into brain), and then a plane flight to PA in Bris for further investigation. My husband being asked what line of work and then being told that work is now out of the question. It has definitly been an interesting time, learning so much about the body, health, and cancer.

[storm]

Hi Nat Tried to reply 2.5 weeks ago but each time I tried to send I lost the content. Since we have moved to a new address and in the process found that we were off the internet and had to reapply for the new address (it takes 7-10 working days for the new connection. So appolgies for the long delay. Lorraine had the MRI and then saw the oncologist yesterday with news that the tumour had less mass and swelling. The amount of lessening in size was not measured, the end description is that it is at present stable. The news is good but leaves me in suspension I was expecting some worsening She is a bit shaky when negotiating stairs and crossing the road and has been disorientated in the middle of the night when going to toilet - (and ended up falling, very luckily not hitting her head. So now we use a night light) I assume that it is a part of the side effects of the drug Avastin (Bevacizumab) However she is glad to be taking only the Avastin and not chemo drug with the less side effects. How did your 2nd opinion go. Hope there is some good stuff out there it all seems like a ride to nowhere with pauses Hugs again Geoff

[storm]

Hi Groenevelt68 yeah it throws everthing out of whack Loss of work income lisence independence. and you as a carer your life thrown upside down. Geoff

[peanutz]

Geoff - glad to hear Lorraine is doing well. Dennis is actually doing alright at the moment apart from feeling tired. I guess the effects of chemo is still there; however, the fact that he hasn't had anything but Dex for nearly 2 months probably helps. Second opinion didn't tell me anything new. Australian doctors just follow standard protocols. They aren't willing to try something different like in the USA unless it's part of clinical trials. Anyway, we decide to go with a clinical trial that tests AMG 595 on human for the first time. It sounds scary but Dennis like the idea of it as other options aren't that promising anyway. He gave approval for his tumour tissue to be tested and it's positive for having the type of gene that they look for and the drug should work. We were told only 30% of GBM patients has this type of gene which shows an abnormality in the tumour cells. So he's likely to be able to participate in this trial. So far, they only have 2 persons enrolled in Australia and none in the States. There are some other tests such as blood test, urine test, and ECG check. MRI scan has been organised for next Tuesday so it would be interesting to see how much the tumour has grown. Will report back on how he goes with all this.

[peanutz]

Groenevelt68 - 7 rounds of chemo mmmm I'm sort of jealous. How silly is that!? Sometimes I wish I could wake up from this nightmare. It's bad enough having to come across with GBM, worse with the recurrent one it seems. Basically, doctors told us to forget about being one of those 5-7 yr survivors. To get 12 months from now would be incredible. It's so hard to believe though. My partner still makes me breakfast whenever he can. He sometimes makes me dinner as well. He walked for 5 kms once last week and once this week but pretty tired afterwards. I can't see how he can be gone in 12 months. A doctor we saw yesterday told us that things can go bad in a matter of weeks. *sigh*

[Groenevelt68]

Well we never got to do the 7th chemo session as the MRI in March indicated that the 1.2cm tumour is now over 3cm and we were sent to PA to see specialist. After three weeeks of phone tag and running around we found out that surgery will not be done. The new tumour is sitting in the left temporal lobe in the area of communication. We will be doning another round of radiation to start later this month and will see the chemotherapist to see what is on offer there. It is likely that we also have less than 12 months.