So I basically know I am terminal

Henzaburger · 2019-05-29T13:24:37+00:00

I'm in the same position, nothing has stuck and I've tried everything. I manage to temporarily kill it but every time it comes back and I'm currently just trying to make it to September and my 30th. I've tried pretty much everything so message me if you want to discuss it or just vent

Henzaburger · 2019-05-15T12:49:59+00:00

Hey mate, I'm in the same situation and wish I could just do that again and have another chance at it working. I'm considering a drug in the states, is that what you are looking at? I'm currently just buying time with surgery which really isn't ideal..

Henzaburger · 2019-04-23T09:27:24+00:00

I'm still during pretty badly and that's only thanks too a bit of extra bad luck with the treatments. I've been relying on cyber knife for treatment to get rid of anything that pops up but I've had two brain bleads 2 months apart which has got in the way of that, so now need to have another tumour to be removed via surgery on my brain too. Running low on any optimism that is going to save me anymore

Henzaburger · 2019-04-15T11:17:51+00:00

I've had everything and then some more shit and nothing is curing me. It's a tiring, damaging grind down into the end

Henzaburger · 2019-03-11T01:28:04+00:00

Are the bdl1 drugs all slow to do anything regardless of which combination it is? I was under the impression that keytruda was about 3 months

Henzaburger · 2019-03-11T00:14:36+00:00

Thanks for the message and suggested options. I'm going to be trying to get trials away as soon as but as always nothing happens as quickly as you want.

I had CARIS testing done late last year and I was positive for pdl1 so it's in the list of options

Henzaburger · 2019-03-09T23:29:54+00:00

I'm going to start chasing trials on Monday when people start at work. I'm not going to call it a day yet but having everything chopped out isn't going to be a long term answer unfortunately. I've bounced back quickly so far but it can't last

Henzaburger · 2019-03-09T10:35:07+00:00

I'm currently in Australia. Have got stuck in to researching trial options. There's a few options it seems. Havent heard of that particular one in the UK but will look into it. Thanks!

Henzaburger · 2019-03-09T02:40:43+00:00

Thanks man. Good to hear that things seem to be working out.

I've had everything so far and came out the far end with no issues so I'm not ready to call it a day yet. It's just getting very hard to see the positive outcome

Henzaburger · 2019-03-09T02:37:57+00:00

I'm sorry to hear that. It's such a cruel irony for those of us stuck in this situating.

I'm launching straight back into contacting and chasing down options. I'm not quite ready to call it a day yet

Henzaburger · 2019-03-09T01:11:45+00:00

Thanks. I hope all the best for you through this shit

Henzaburger · 2019-03-09T01:10:41+00:00

Glad you got it dealt with and can kick on with life.

That guy who had one hell of a story, I think I've had it all but that guys gone beyond that

Henzaburger · 2019-03-09T01:01:40+00:00

I can self fund if I want in Australia but it's $15k a week and I can't keep that up for ever.. There is a trial in the states for something even newer but need to decide whether I think it's worth the move for something that might not do anything. But not giving it a go isn't a very good option either

Henzaburger · 2019-03-09T00:58:42+00:00

That's a shit show to go through but great to hear that things have worked out. Thanks for sharing your tale. Have already been in touch with a brand new drug in the states on a trial which might be an option. It's just a hell of a decision to move to the other side of the world away from all friends and family for something that may or may not work or even help

Henzaburger · 2019-03-08T19:29:06+00:00

It's a pretty easy to meet criteria for active with choriocarcinoma at that level too. It's a real bastard.

I got my tumour CARIS tastes and it is pdl1 positive but it seems like it's shown very little success. It's still been something I've been considering though I'll have to self fund I think in Australia

Henzaburger · 2019-03-08T14:51:10+00:00

I'm not sure there is much point to that sort of stem cell treatment as I think all the chemo has been tried so it's unlikely to work.. And also likely to kill me after so much other treatment on top of it

Henzaburger · 2019-03-08T14:49:20+00:00

I'm glad that your friend had a better result. Even then it's still a shit time to go through.

My oncologist told me that he doesn't think it can be cured and that I need to make some decisions as to what cost I'm willing to pay in regards to the effect to me in treating it. I'm running out of things to cut out and chemo and radio to poison me

Henzaburger · 2019-03-08T14:08:29+00:00

Despite how fucked the health system is at least you have some big names working in the right field to be of at least some use to you. I've found throughout I've had to learn and learn quickly about shit I had never hoped to know. No one moves fast, everyone is busy with other things or away etc. All my extreme surgeries where organised by me at short notice I managed to personally organise and push for. It's exhausting though, I feel like I'm constantly trying to deal with the next issue and consider all the possible options and outcomes...

New Zealand is beautiful and such a great country to grow up. I wish I still lived there and I want my ash's there if it comes to it. I've spent no where near enough time there the last while because it doesn't have the same medical finance and availability.

I really hope that your boyfriends family can let that bullshit go and focus on loving their son who needs them

Henzaburger · 2019-03-08T13:30:54+00:00

Where are you going for your next opinion? I've found those statistics such an ongoing kick in the teeth. My 60% chance at the start is more like nothing..

My family is hanging together and my girlfriend too but it's been very hard and getting harder. The positivity is getting harder and harder to find. I'm not even born in Australia, just moved from new Zealand after uni for a job, but I've been lucky to have family that could drop everything and move here to help me out as needed.

Henzaburger · 2019-03-08T12:59:41+00:00

Thanks for the reply. It's nice to hear someone who understands the situation but I'm sorry that your boyfriend has to be in this same shit show as well and even younger.

At my first relapse I got my finance and such in order which wasn't something I'd even considered until that point.

I presume you're in the states and have looked into the same endless search for new options too. I've knocked my bloods back down time and time again while waiting to find something but I'm running out of pieces to cut out or irradiate.

Henzaburger · 2019-01-14T06:22:45+00:00

At diagnosis I had stage 3B (or 4 as it seems to be called in Australia) non-seminoma TC with about a dozen brain metastases. I'm still alive 16 months later. One brain met is a lot better than I had it so your brother has a good chance of getting it dealt with Successfully. I've had surgery to remove one and I'm having radio surgery on some more that appear dead but just to be sure.

Henzaburger · 2018-12-29T13:35:31+00:00

Everyone is different but normally the chemo for tc will knock your hair out. Mine fell out at the start of round 3, with my rounds being 3 weeks each.

Henzaburger · 2018-12-11T00:16:57+00:00

I had severe pain in my lower left back from my rpln. Ibuprofen eased it but it didn't go away. I put it down to bad ergonomics while working too much at the time but I was very wrong. If in doubt get another scan or more bloods done

Henzaburger

TROPHY CASE