About peanutz

peanutz

It seems to be the norm for people with cancer to be moody, grumpy, and pretty much selfish. Everyone seems to blame on the medication such as Dex/steroid. My partner has brain tumour and been taking Dex for the past few months. I think Dex on it own is bad enough and causes him mood swing. However, the whole experience of facing the reality that he could be gone in a year make it worse. My partner wasn't feeling well for 2 months - Jan & Feb this year during his 3rd & 4th round of chemo. He was quite grumpy and angry as he was frustrated by the tiredness and being generally unwell. Then, in early March we discovered that his brain tumour has grown back. He became very demanding and self centred. It's always about him only. It was like nothing I did was good enough. One morning I didn't feel well and needed a rest, he was very grumpy and demanding more than usual and I just couldn't be bother to play being a submissive girlfriend so I completely ignored him for the next 24 hours even though he kept telling me how unhappy he was with me. Strangely, the next morning we discussed about our feeling and since then he was nicer than anything in the past few weeks. I guess people with cancer need to be told that we may not completely understand how they feel but we try to do our best to support them. At the same time, they should understand that we also suffer from the whole experience and the possibility of losing someone that we love. It's just not right for them to punish/abuse us with their frustration and bitterness.

peanutz

Hi Michelle - my partner is doing OK, I think. He hasn't had any treatment for the past 2 months. He was supposed to have the 5th round of Temodar in early March but we discovered the tumour has grown back. The NO gave us a couple of treatment options but it's likely that he will participate in a clinical trial of which the screening process will conclude next week. Hopefully, he can start the treatment right after Easter. Hope your father's treatment goes well.

peanutz

Hi Rarsie, GBM4 (Glioblastoma Multiforme Grave 4) is also brain cancer. My partner's tumour has recently grown back after only 4 rounds of Temodar. So things aren't looking good for us. Fingers cross for a clinical trial that he's likely to participate. The screening process will finish next week and if all goes well, he will be the 3rd guinea pig in the world. @_@

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*

peanutz

Hi Rarsie, Not sure what GR4 is but my partner has GBM4 - dx early Aug'12. I'm more than happy to share my experience. Take care

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

Is there a 'Like' button for this? I believe I spoke to Kate over the phone a couple of times when I rang Cancer Council Helpline and she is very nice!

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

peanutz

Well, while it's been a tough few days after we heard the bad news, I could still manage and live my life. I could wake up earlier than usual to attended and 'participate' a full day workshop on Thursday with tired eyes and a mild hangover. I actually had swollen eyes from crying but a good bag of frozen peas did the job! I left my partner on his own on Thursday night and went to a friend's party. Being a cheap drunk, I had another mild hangover the next day but could still do some work on Friday. I emailed a Prof. at RMH and got my partner a speedy appointment for 2nd opinion next Tuesday. I rearranged an appointment with the oncologist as he forgot that this Monday is a public holiday but still booked us in to see him and possibly get my partner starts on new chemo. I rang Roche to find out how much we may have to pay for Avastin. Ouch, it could be around $20,000! if my partner responses well. If not, well, 3-5grand for the 1st dose to test it out. I rang the hospital to get MRI images CD made but haven't picked them up yet. I emailed Dr Helen Wheeler to get her advice as she's in Sydney and am grateful for her prompt responses. I emailed another doctor at RMH about a Clinical trial which is about to open, haven't heard back from her yet. I emailed Dr Ben Williams, a long time survivor of GBM, to get his advice and he kindly responded to my email. I spent this morning scanning Ben's document and took note of relevant researches on recurrent GBM treatment options so that I can discuss with the doctors. Ben did such a great job with his document which is pretty much like a scientific paper with all the references. I wonder if any oncologist ever read his document. At least, it's a great starting point for me. I remember a friend said "While there's life, there's hope". I also searched its origin. While there's life, there's hope. Cicero, Ad Atticum Roman author, orator, & politician (106 BC - 43 BC) And... while I'm doing all this, my partner has spent most of his time in bed @_@ I'd better go and annoy him!

peanutz

Hi all, Thanks for the support. I try to keep myself busy with researching now. That's the only thing I can do.

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