An update on Dad

Best wishes for Wednesday, my OH was in a similar position 2 yrs ago and found the waiting between infusion 1 & 2 were the longest and most nerve wracking mainly as everyday was a new expireance .once dad starts to see his PSA lower it does get easier .
Keep us posted
Debby

I pulped fresh pineapple and made into lollipops. They helped but I don’t think anything will actually get rid of it. I found that the metallic taste came on several days after each infusion and lasted around 10 days or so.

Glad your dad got his second cycle ok after the problems with the first. The fatigue unfortunately is part and parcel of the treatment. Best to just give in to it when it comes on. There’s nothing to be gained by trying to fight it.

Dave

Good to see that this one has gone reasonably smoothly. I don't think looking at scans would tell you very much at this point - I don't think chemo makes tumours smaller or causes changes that you could see on a scan ... what it does is critically injure the nucleus of each cancer cell so that as it replicates in the future, it is weakened.

Imagine each met / tumour as a satsuma. Surgery cuts out the satsuma. Radiotherapy fries the satsuma. Hormone treatment starves the tree so that the satsuma doesn't grow and cuts off the sun so the satsuma never ripens. Chemo is like getting a syringe and injecting poison into the satsuma so that its insides shrivel up and go bad but you can't see that until you peel it because the skin still looks fine.

They will probably measure progress by his PSA (although chemo doesn't necessarily make the PSA drop the HT should) and other bloods such as his ALP which indicates how active the bone mets are. 

Edited by member 08 Apr 2018 at 18:22  | Reason: Not specified

Hi,

In my case a bone scan was arranged by my consultant on my first visit after chemotherapy ended. That was to give a “this is where we are now” point.

All the best

Dave

Hi Pen,

That was not exactly the meaning I was hoping to convey. I was trying to show you a possible positive outcome without giving you false hope, which is no good to anyone.

I was speaking entirely from my own experience, I have no, or very little medical knowledge in this area.

As a recap, I was diagnosed T3N1M1 with extensive spread to the bones, some lymph nodes and into my lungs. I was G9 with a PSA of 168. That was in July 2015. I started on Degarelix HT treatment immediately, which worked wonderfully for about 15 months. Then my PSA began to rise again, so I started on Abiraterone alongside the Degarelix. This also worked wonderfully - for about 10 months, which brought me to October 17. That was when I stopped the Abi and started Docetaxel chemotherapy instead.

As I said, going through the chemo was a very unpleasant experience and as I came to the end of it, I still felt very rough. I honestly thought that I was reaching the end of the road. I certainly did not expect to still be alive as of the end of May. But during a conversation with my specialist nurse, I happened to mention that I knew I had only months left to live. She denounced that as nonsense. She said who told you that? (Er ..... actually my onco!). She said you have years in you yet. I did take great encouragement from that, even though I realised that there was a large element of false hope in what she said.

Once I escaped the chemo "hangover", which took a few weeks, I began to feel so much better. I had much more energy, I was "bouncy" again. I generally felt the best I had felt since before my diagnosis. When I saw my onco at the beginning of May, he asked my wife what she had been doing to me! So I had about two and a half months of this well being. It began to wane when I got a severe backache a couple of weeks ago.

So yes, I am beginning to feel bad again, about the same as I did before starting the chemo, but I do believe I have still got a bit of life left in me yet. I do now hope to see another Christmas, something I would never have believed going through last Christmas.

I am sincerely hoping that your dad may find himself in the same boat as I have been and that when he recovers from the chemo, he will feel so much better in himself. Then he may be strong enough to move onto another treatment.

I hope you can see that I am offering a positive view of your dad's future. I do hope he also has "years ahead of him", but just take it one day at a time.

My best wishes to you and your dad

Peter

Well said Johsan. PenP was very helpful to me about an off topic matter. We did continue our discussion in private messages, since guide dogs is not actually the theme of this site. But I appreciate that all matters of daily life are of interest to others.

As an update to the guide dog question, we did follow PenP's advice and last week had a visit from a very nice lady from our local guide dog centre. She explained all the procedures and more importantly, pointed out the responsibilities of the dog owner. After thinking about it very carefully over the course of the last week, my wife has decided that at this moment, she would be unable to accept those responsibilities, mainly because of my impending treatment regime. But she does intend to look into it all again once my treatment situation is more clear.

Both my wife and I are very grateful to PenP for all the advice she has given to us.

PenP - I hope your dad is still doing ok. It has been a while since your last post.

Best wishes,

Peter