The million dollar question

Hi Phil.

Good to see you’re using the specialist nurses, they are so helpful and will look into stuff for you if you need. 

They are a good sounding board and can help to put things into perspective. 

How are you feeling in yourself now? Are you slowly beginning to get your old self back ? 

Phil

That’s brilliant that you’re starting to feel ‘almost’ normal again. I’m looking forward to that happening. Nerce wracking time waiting till end of September for the Ct scan results. But you’ll be too busy on your holibobs to think about crap stuff. I’m right jealous as both those places are on our list. Obviously I’ll have everything crossed for your results and hopefully you’ll get ages before anything starts off again. 

We went to Finland in Jan ‘18 a few days after my first bone scan and a week after diagnosis. I asked them not to phone me till we got back. I never thought about the PCa the whole time but unfortunately the missus was a bag of nerves. So we’re all different. Hoping you will put it all to the back of your minds.

We might book an early spring to Boston then up to Maine as we missed the wedding this month due to my flying ban. One of my BA companion vouchers runs out in May so will try to use that up. 

I’ve had a rough time after my last chemo , which was my 5th. Very tired, awful metal mouth and really bloated stomach. Taking some meds for the mouth and stomach and they’ve both eased off last couple of days. Energy levels a bit better too. Next chemo got to drink cold stuff to help with the taste buds and I’m learning to eat less and a bit more healthier 😳… 

I was lucky my Onco arranged a CT and Bone scan after my 3rd session. He tells me that the chemo is working on the bone mets, so that’s good. PSA going down too. 
I have an appointment to see him f2f on the 10th Sept so hopefully we’ll carry on with the chemo for the full 10 sessions. 

Have a brilliant holiday and good news from your Onco on your return. 👍

Cheers

Phil

Hi

Thanks decho and phi.

Will update thread after next appointment.

Phil

Hi Phil, 

Thanks for posting your update, I've been thinking about you. 

Hope you had a super time gallavanting!

Pity your PSA is going up again, but glad your scans don't sound too bad.

Is it Leutiutuim you're looking at next?

My Allan has just had cycle 2 of cabazitaxel and is suffering.

I had a look at leutiutuim as well, it's fairly costly so will have to consider further.

All the best 

Melissa x

Hi both

Thanks for your thoughts,one is self funded the other is NhS I forget which one,cabazitaxel is still in reserve.

I'll cross that bridge when the pet scan results come in.

Cheers Phil 

Hi Phil - well done for getting to New York and Las Vegas! Hope the scan is OK and you can plan further trips - we all need things to look forward to 😊Good luck!

Phil, no personal experience but if I understand it correctly it is £20k per dose and you need 6 doses. That price excluded Vat ,but not sure how vat works with medical items. A research professor was taking to me a few weeks ago and I " think" he mentioned £140k for the course.

Thanks Chris 

Sorry to hear that Phil. It's outrageous that there is a treatment available but you have to pay such a ridiculous sum for it. Have you considered crowdfunding (if that is the right term) or similar? I'm forever being bombarded with "just giving" requests on social media, from people trying to raise cash for some cause or other. PCUK might even be able to help you set something up? I'm sure there are plenty of people on here who would be willing to help advertise the effort. I certainly would.  Stay strong mate 👍

Ian.