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peanutz
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August 2011
November 2016
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May 2012
Wish you all the best in this journey. I don't have much knowledge to share on the lung cancer but will listen. Well, or read 🙂
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May 2012
My partner gets to stay on the trial for another 4 weeks until the next MRI. The scan from Monday looks promising although they spot something around 7mm in his front left temporal lobe which is a bit further away from the main tumour area. It's not conclusive what it is as the main area looks better and the swelling is better which means the drug works but then why there is this new little stranger. Let's hope it's nothing but my gut feeling says there is no such a thing as 'nothing' in this fight. Well, for now, just enjoy our lives until the next anxious few days of waiting for the scan result.
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May 2012
I've never heard of this abbreviation MDT although I come across about multi disciplinary team concept. There are too many strange new vocabularies in this new world for all of us. Hope you enjoy learning and share knowledge with us.
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My partner is having an MRI this Monday which will determine whether the drug works or not. If not, he'll not be part of the clinical trial any longer and have to find a different treatment. We hope the tumour stays the same size if not smaller. Fingers crossed!
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April 2012
Hi there,
Sorry, can't say much as it's still too early. The second dose is scheduled for tomorrow. There are both up (active, out and about) and down time (no energy the whole day) in the past 3 weeks since the 1st dose. We have an MRI next Monday which will tell us whether the treatment works or not. It seems so early to judge but hope it works (either the tumour stays the same size or smaller). If it doesn't work, that's the end of this treatment. We are very nervous at the moment. 😞
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April 2012
Hi Groenevelt68,
I didn't know radiotherapy is an option after you had 6 weeks of therapy. Your husband might have had lower dose of it so that can be an option. We were told the same thing about surgery that they don't recommend to have the second one within a year.
There is also another clinical trial, not the AMG 595 that my partner is getting this Tuesday, which will start to recruit in late April or May. It is a randomized phase II study (there are 3 arms in the study), investigating a new drug called LY2157299 with another drug used more commonly called lomustine. You may want to explore this option. We don't want to wait for this one as everyday is so precious. I find it's hard to just sit tight and do nothing but wait. It took us 5 weeks from getting the bad news (7 March), seek 2nd opinion, went through screening phase, to getting a treatment from this clinical trial (10 April).
Take care
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April 2012
My partner has a new nickname, Mickey Mouse. He likes this nickname as he watched Mickey Mouse cartoon as a kid and that he has a chance to be a lab rat/guinea pig whatever you want to call for this clinical trial we try to get him in.
Yesterday we thought he wouldn't be able to join due to a long list of supplements that he has or has taken which could complicate thing with the trial. This morning, we were informed of a 'good' news that he has been given a green light to participate in the trial but not allow to take any supplement from now on.
Now, let's think if it's a good news. It's sort of a good news as he gets to try a new drug that seems to be promising in the lab. However, it's the first time they test this drug in human and that's something I'm a bit uncertain about. At least, to our knowledge, there are two persons in this program already and they are still alive... and well, I hope. Fingers crossed!
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April 2012
Hi Terese,
Nop, no carboplatin. The only thing that Dennis has taken since the bad news is Dex and Somac. We were told that to be eligible for a clinical trial (AMG 595 or any other) you have to have only Temodar, nothing else. So Carboplatin and Avastin were out of equation while we explored our options.
Nat
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April 2012
Just when we thought we would try our luck with a clinical trial - first test of the drug in human, it's not simple as that.
There is this new clinical trial of a drug AMG 595. You have to have a certain type of gene/cell which we were told 30% of people who have glioma (or GBM? - not sure) would have this. We got the tumour test - done for my partner and it's positive, blood test - fine, urine test - fine, ECG test - fine BUT he could still be ineligible to go on this trial. Guess why!? My partner takes so many supplements that it could be too complicated or too much of a risk to get him on the trial. Now we are waiting for the verdict....
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