An update on Dad

User

Posted 15 Apr 2018 at 15:09

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

User

Posted 27 May 2018 at 19:00

Dad has now had chemo#4 and 5 and is on medication to reduce his heart rate which is helping. The side effects are unpleasant - loss of taste and ulcers. The hair has thinned considerably but mainly at the sides and back. He experiences quite a few aches and pains but I don’t believe he is taking anything other than Paracetamol at the moment. He gets pretty tired but is still managing short walks round the block. He says he can’t look too far into the future but prefers to take each day as it comes. His PSA was 16 when he started chemo then 14, 9, 6. We don’t have the latest result. It is still like living on a rollecoaster but every day is precious and I feel blessed he is still with us. PenP.

User

Posted 27 May 2018 at 23:26

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

User

Posted 28 May 2018 at 08:52

Thank you for your reply Peter - much appreciated. Yes I have accepted that post chemo we may not have very long unfortunately until something else needs adding into the mix of treatment. I have also come to terms with the fact that it is very aggressive and he had a very quick relapse post radiotherapy. So for now, we all just try to take a day at a time. i feel very afraid of the future and what it holds but I know I must slow down and think of ways I can enjoy my time with him now. PenP.

User

Posted 28 May 2018 at 15:30

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

User

Posted 28 May 2018 at 20:52

Thank you Peter - I send best wishes back to you and your family. I have had professional help in coming to terms with what is happening although it doesn’t make it any easier. I am very very close to my Dad. I dont know if you have read my profile bit but I’ve put it all on there. It’s so gutting that the radiotherapy didn’t ‘get rid’ as we had been led strongly to believe it would. The nurse explained that ‘the horse had already bolted’ and the micro mets were already there. Dad is trying tget get through ten chemo sessions. The staff at the unit are so incredibly amazing. It is certainly a battle isn’t it? I hope you have some good people supporting you. We had a similar grim prognosis from the onco... I think we all need hope. PenP. PS really good to hear from you - thank you.

User

Posted 28 May 2018 at 23:24

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

User

Posted 29 May 2018 at 17:46

Hi Peter I am sorry to hear about your wife’s sight loss. I understand a guide dog is not for everyone but I board the dogs when they are in training school (they live with me for up to six months evenings and weekends). We have had six full time dogs and three who came for holiday boarding. Of the six, five have qualified and are working guide dogs which we are enormously proud about. Our latest one is guiding for a partially sighted lady who is a teacher. The dogs are incredible and can really make a huge difference. However there is another scheme called My Guide which you may be interested in. This is a trained person who can help a blind or partially sighted person with whatever they would like them to do. It could be going for a coffee, helping with shopping - anything really. There are guide dog centres all over the country. I don't know if you are on Facebook but there is an excellent page for guide dog owners to swap stories which you might find of interest. If you have any questions I’d be happy to help or I can point you in the right direction.

User

Posted 02 Jul 2018 at 17:57

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.

User

Posted 02 Jul 2018 at 18:00

Thinking of you and dad , it’s always good to read peoples updates .

All the best

Debby

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.

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