My story - 16 years with metastatic prostate cancer - I’ve had just about everything

[Kezza2]

I work on the principle that if I wake up in the morning it is a great day and I have an obligation to make the most of it.  And if I don't wake up, I wont know anything about it so why worry about it.  Works for me !!!

[Feurmann]

I am not sure that I have much faith in prognoses. This is possibly because I am only at an early stage in my condition, having only been diagnosed about a year ago. (However, someone who has had Pca for longer, and who has had more treatments than I have had, may be in a position where they can have a more accurate prognosis.)  

 

I read an article that looked at prognoses that doctors working in aged care facilities made about people in these places. Most of the prognoses made in this context were optimistic, some by quite a bit. The article speculated as to why this might be. As I recall, one theory was that most doctors became doctors in order to save lives. It is difficult for them emotionally to acknowledge that they have "failed" (as they may see it). They also may wish to shelter the patient from what they know will be a difficult scenario for the patient and their carers to hear. Doctors are people too!

 

To know how long one can reasonably expect to live opens a Pandora's box. Most people would find it incredibly confronting. Of course it would also have tremendous value. Our carers and dependants need to be provided for. I get all that. We are oriented toward certainty; ambiguity is hard to tolerate. Does this make us value certainty at the expense of accuracy?

 

I have learned to think about the outcome of my condition as being contingent on where the cancer manifests itself next. (It has certainly been encouraging to hear that there are things that can be done in scenarios that I would consider game over.) I try to be optimistic without being hopeful. Everyone needs to make these emotional adjustments - however they would describe them - in their own way.

[HighCadence]

Hi David,

I’m  really sorry to hear about the side effects of Cabazitaxel. I think I’m going to give that a miss.

I hope the Lutetium works - please let me know how you get on.

Most important, keep going and don’t give up - you never know what’s around the corner on the treatment front. Keeping yourself in the game for as long as possible is what this is all about. 

Regards,

David.

[Patrick Turner]

Hi HighCadence, I am on Docetaxel, not Cabazitaxel. Its amazing how many ppl in chat groups get spelling wrong and thetwo drugs mistaken for each other. Here, Docetaxel is first chemo drug, and if it does not work they  give Cabazitaxel, probably with worse side effects of neuropathy. Thenn next up is Carboplatin, and there's a fourth, and I don't know what that is.

Because Docetaxel appears to me to be useless, I have no faith in moving to Cabazitaxel. But Lu177 might be better, and despite getting a dry mouth after treatments, the total side effects could be less than for chemo. I know a guy who had a neck cancer and had chemo + EBRT and he's hasd a dry mouth for 10 years, but he copes OK and is now 79.

But there's another radio active drug, Actinium225, maybe better than Lu177, see the latest at

https://link.springer.com/article/10.1007%2Fs00259-018-4167-0

 

I doubt Actinium225 is yet available in Australia.

 

Another day of fine sunshine here, shed work and a cycle ride to have lunchand life still is OK, despite storm clouds.....

Patrick Turner.

[alanbarlee]

Those last three posts - from Feurmann, Kezza2 and Patrick - are nicely put and thoughtful, and embrace the philosophy of many of us on this site.

Thank you.

Alan