An update on Dad

PenP, the Gleason 9 won't have changed. The spread can be tackled in a variety of ways. Chemo is usually the first option, but your Dad's oncologist can probably suggest the others. Perhaps it's a case of getting the heart rate under control, sorting the pain out then chemo? Sounds as though he is in good hands anyway.

AC

Debby x

Hell PenP and thanks for the update. Good luck to dad for Wednesday

Ian

PenP it is really important that you, dad and the rest of the family know everything you can about MSCC - it can come on so rapidly and is extremely serious. If the doctor wanted to talk about it, they must think that dad is at particular risk.

Re the metallic taste, have you tried freezing fresh pineapple for him to suck during the infusions?

PepP,. It is all about creating a fold in the muscle into which this damned great needle can be inserted. Obviously, when sitting, the belly naturally folds a bit so the nurse was probably more easily able to grab the chunk of muscle needed, especially if your Dad is slim. Personally, I've stuck with lying on my back over the years and it has worked for me.

AC

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,

Glad to hear that your dad has tolerated five chemo sessions so far. How many is he scheduled to have?

The side effects are very unpleasant as you say, but I am sure your dad will feel the benefit after he has completed all cycles and has had a bit of post chemo recovery time. This is what I found myself. But I should add a word of caution, the period of benefit may not last very long. In my case it seems to have been about two months, but I guess this is variable depending on the individual.

I know exactly what he means about not looking too far into the future. When I was going through the chemo, I couldn't see any more than about three months into the future. I was feeling so bad that I couldn't see myself surviving the treatment. But survive it I did and as I have said, once I came out of the treatment and recovered, I suddenly felt so much more optimistic, as I still do.

I have almost lost track of my PSA ups and downs over the period of my chemo sessions, but post chemo, my PSA more than doubled from 23 to 53 in those two months. Again, this is likely to vary from individual to individual. So the chemo offered a lot of respite, but it is unlikely to last forever.

I lost most of mu hair about two weeks after staring the first cycle, so I shaved the rest off. It has begun to grow again now though.

I hope your dad continues to improve, but you are right, it is like living on a rollercoaster. Make the most of every minute.

Peter

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

Hi Pen,

Yes, I have read your profile. I understand that you are very close to your dad and I am sure that will give him enormous strength through the weeks and months to come.

All I have been trying to say is that you never know what the future may hold and it may not be as bad as you fear. and I sincerely hope that it isn't. But you are wise to prepare for the worst. I know it is a cliche, but I feel it is very true , that we should hope for the best, but prepare for the worst.

RT was never an option in my case, because the cancer had spread too far. They did consider palliative RT on my prostate as part of the Stampede Trial, but I have a history of ulcerative colitis, so my onco felt there was a danger of kicking that off again.  (actually, I think it has anyway, probably as a reaction to the HT)

Ten sessions is a lot, but if he can cope with them all, it will help him a lot afterwards. I was supposed to have ten, but after six cycles, the onco felt that the toxicity of the chemo would outweigh the benefits. Might be worth discussing this with your dad's onco?

Yes, I have a very good support network. I am married and I have two grown children who both live very close to me. My wife has been by my side at every onco appointment, every ct, bone, MRI scan, every HT injection, every GP appointment and she has even been at my side in A&E until 4am (twice!) and back at the hospital visiting me at 2pm. Yes she has been wonderful and so, so supportive. We don't talk about my cancer all that much, but occasionally, it will come up and we will talk for hours about it. Its as if we need to let it build up and then suddenly let it out in one go. It works for us anyway! My son and daughter are always around offering whatever help we need.

One big worry I have is that my wife is slowly but surely losing her sight and she is heavily dependent on me. We have been trying to put things into place to help her after I have gone, but I know it worries her as much as it does me. I do keep trying to persuade her to look into getting a guide dog, but she is very reluctant. Because of her sight loss, she will probably never come on to this forum, but I have asked my son to log on for me if ever I can't do it for myself.

I am also on the community palliative care team's list and the district nurse comes to see me now and again (she is coming tomorrow actually). I was put under the care of the palliative team immediately after diagnosis. It is reassuring that they are available on call any time I need them.

So yes, I have plenty fo quality support.

Well, I am going on a bit ,so I will finish there. As always, I send you and your dad my very best wishes

Peter

Dad has now had chemo number 7. The PSA went down from 16 to 4.5 and the last session it is at 5. The oncologist did say he didn’t expect it to go below 4.5 and they were happy for him to continue with a PSA of 5. These PSA numbers can be such a worry. Thank you for reading my update. I still read all the new posts and comment when I feel able to. PenP.