An update on Dad

User

Posted 16 Jul 2018 at 08:54

All the best Penp for your Dad 😊

User

Posted 18 Jul 2018 at 06:53

Thank you for the update Penp and I wish your father the very best.

Your guidance and advice to Peter just proves the worth of this site.

Not only do we try and support each other through this cancer journey but the ability to pass on our individual knowledge and experience in other areas of life is brilliant.

I'm sure your advice regarding the guide dogs was very helpful to Peter

Edited by member 18 Jul 2018 at 06:55 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 18 Jul 2018 at 22:52

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

User

Posted 24 Jul 2018 at 21:20

Dad has now had chemo number 8. We have had a difficult time since number 6 due to muscle weaknes. PSA was 5 at chemo 7 and is now 5.6. We’ve been told not to get too anxious about this - the oncologist just wants him to keep going to chemo number 10. He’s tolerated chemo pretty well. The muscle weakness has actsully become the main issue for now which he is really frustrated by. He is having chemo on the oncologist‘s recommendation. He was thoroughly checked for SCC but it isn’t this. At the moment it’s a bit of an unknown. The main focus is the chemo. Best wishes to everyone.

User

Posted 24 Jul 2018 at 21:54

Well done to your Dad tolerating the chemo so far. I really hope it does a good job for him and the muscle weakness resolves.

Best wishes, Ian.

Ido4

User

Posted 24 Jul 2018 at 22:08

Well done to your Dad and his tolerating the Chemo. He can look forward to a Chemo break when it is done.

Best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 24 Jul 2018 at 22:55

Hi Pen,

Glad to hear that your dad is tolerating the chemo and is now mostly through it all.

Its a shame about the muscle weakness, but I have had that progressively since my diagnosis 3 years ago. I didn't have chemo at all until November last year, so I don't think, in my case at least, that it is caused by the chemo.

I wouldn't get too disappointed by the slight rise in PSA. Chemo does not necessarily lower PSA greatly. Is he still on Casodex?

Best wishes

Peter

Edited by member 24 Jul 2018 at 22:56 | Reason: Spelling mistake

User

Posted 25 Jul 2018 at 13:25

Hi Peter no he’s not on Casodex but is still on Zolodex. Bizarrely the muscle weakness came on suddenly after chemo 6. No pain sitting or lying but head is down and gait is poor. Like the neck muscles have completely given up. So walking is problematic. The MRI didn’t show anything in particular but the oncologist wants to hold off any more scans until after chemo. So it’s all rather odd and has changed his posture. I’ve no idea really what is going on. How are things with you? Penp.

User

Posted 25 Jul 2018 at 23:37

Hi Pen,

Sorry to hear your dad is having so much trouble, but I doubt it is because of the chemo (based on my own experience). To be honest, I blamed my HT regime of Degarelix for the fatigue and muscle weakness, but I have to stress that I have no medical evidence to support that. Not sure why it would come on so suddenly after chemo 6. I think my wife would confirm that my posture has deteriorated badly since diagnosis.

However, I must admit that I felt really good for a couple of months after completing the chemo, so hang on in there. Maybe it is like banging your head against a wall - it is nice when it stops! But it was nice to feel good again even for a little while.

I have just done a bit of an update on my thread "Triton or Re-AKT" having been to see my onco today. I am going for a single zap of RT on two bones in my spine on Friday. The planning process was certainly an interesting experience! I am (hopefully) going on to the Re-AKT study, so I feel as though I am finally getting some treatment.

Best wishes to you and your dad. I hope he feels better soon

Peter

User

Posted 08 Aug 2018 at 16:48

We saw the oncologist today and although the last three chemos have shown a PSA rise we are going ahead with number 9 on Friday so I presume the oncologist still thiks it’s worthwhile? A recent scan has revealed a met on the thoracic area of the spine which is possibly impinging a nerve hence the neck and mobility issues but it isn’t showing SCC or disc issues. So a blast of radiotherapy planned. If anyone has any thoughts on any of the above I’d be glad to hear from you especially if anyone has had any good results from radio to a met. Thank you. PenP. PS Abi and Enzo still in the bag.

User

Posted 08 Aug 2018 at 20:20

Blasts to single mets are often very effective and can reduce pain immediately.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Aug 2018 at 10:23

Dad has now had 9 chemo sessions. Recovery time from the last couple has been much more difficult. He had a one off dose of radiotherapy yesterday to an area in the thoracic spine. I am wondering if anyone has any experience of these one off doses and how long it took to feel any benefit. If this area has caused pain to spread across the shoulders might he get some relief here too if the aim of the radio is to shrink the troublesome area?

Edited by member 18 Aug 2018 at 10:26 | Reason: Not specified

User

Posted 18 Aug 2018 at 23:03

Hi Pen,

I did send you a PM on the 11th August outlining my experience of the one off zap. Did you see it? I can send it again f you didn't get it.

I also sent a quick reply to your PM this afternoon. I will reply more fully when I can summon up the energy!!

I will be in touch one way or another very soon

Best wishes

Peter

User

Posted 03 Sep 2018 at 19:29

After a very tricky and stressful start, my dad has now completed his ten sessions of chemo. PSA went down to 4.5 at its lowest and was 6 at the last two blood tests. Generally speaking Dad has tolerated the side effects pretty well all things considered. Loss of taste and fatigue have probably been the main issues I would say. Now chemo is done it wasn’t (for us) as frightening as we’d imagined and the nursing care has been outstanding. We see the oncologist in five weeks to discuss what happens next. I will keep posting updates but I would just like to say a big thank you to everyone who has commented on my posts and helped me to understand what is going on. I’ve got dad’s GP to refer him to the day hospice and we have an invitation for a cup of tea in two weeks. PenP x

User

Posted 03 Sep 2018 at 19:42

Glad all has gone well ,sending best wishes to you and your dad

Debby

User

Posted 04 Sep 2018 at 08:28

That’s really good he has managed all ten sessions and that he is seeing the hospice.

Best wishes,

Ian

Ido4

User

Posted 05 Sep 2018 at 23:26

Hi PenP,

I'm so glad to hear that your dad has completed his chemo course and has tolerated it so well. I am sure you and he are glad to have it over with and I hope you both find the relief that I enjoyed from a couple of weeks after finishing.

I hope you are well yourself.

Best wishes and good luck to dad for the next stage in his treatment.

Peter

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