Dad's staging

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Posted 31 May 2018 at 17:16

So, after a 2 week wait since his MRI and Bone scans, my Dad finally had the stage of his PCa confirmed - T3b N0 M1. When the Urologist confirmed there didn't appear to be any spread to his lymph nodes, I naively thought we're home and dry but then, like a kick in the stomach, he showed us the evidence of spread to his pelvic bone and I knew, right then, my lovely Dad had joined the incurable camp.

Dad seems pretty upbeat and just wants to crack on with the treatment. He's already on HT (degarelix) and will commence Chemo once he's met with his Oncologist in the next couple of weeks. Mum and I really want to remain positive for him but I have to admit, I'm feeling pretty numb. I'm praying he tolerates the chemo well and it does what's expected.

I'd love to hear some positive stories from those living with advanced PCa right now. TIA x

User

Posted 01 Jun 2018 at 13:59

Hey lisabun ,sorry to hear your families bad news.I was diagnosed with much the same as your dad nearly two years ago when i was 70.Its in my hips pelvis and ribs.I had degarelix HT and started chemo docetaxel straight away.Onco.told us new research proved it was best to use them together.When i was first diagnosed my PSA was 408 ,last onco appointment it was 0.6 rising slightly from 0.5 on my previous appointment.Your dads a fit man so he should handle the chemo ok. Hope that’s some reassurance to help you through the coming weeks .All the very best. Geoff.

User

Posted 02 Jun 2018 at 00:13

Hi Lisa,

Geoff is absolutely right about chemo helping Degarelix to work for longer. I do now remember reading that one of the early publications of the Stampede study stated that using early chemo made Degarelix more effective for up to 12 months longer than without chemo. (Pity I missed it!!!).

I think you will find that your dad's PSA will drop quite rapidly with Degarelix. Mine dropped from 168 to 123 within two weeks and then down to 9 a couple of weeks after that. As I said previously, I eventually got down to 1.7 some months later.

With other HT treatments, you can get a PSA flare for a while after starting it, but this doesn't happen with Degarelix, so that is a big advantage. I was told that I was on the "gold standard" of HT treatment at the start.

I should say that I suffered bad reactions to Degarelix and that is why I eventually had to stop taking it. But I do seem to be unique in that. I have not found anyone else anywhere on this site who had the same reactions. My onco used to say that I might be having a bad time with it, but I would feel worse if I didn't have it. So I kept having it for more than two years! Your dad would seem to be managing with it so far, so long may that continue.

I hope your meeting with the onco goes well. Once you have spoken to him/her you will have a much better understanding of the way forward. I know it feels like a whirlwind at the moment, but things will settle down in a little while.

All the best

Peter

User

Posted 02 Jun 2018 at 11:04

Hi Lisa ,i had six lots of chemo over eighteen weeks.Before this i was offered by our hospital Southampton General what they call Chemo Workshop which we found very good.About 10 of us who were starting chemo sat with 2 nurses who explained the process and things we would need at home.Also got to see ward where it happens.You can ask anything you want to know.Be good if your hospital will do the same.All the best Geoff

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User

Posted 31 May 2018 at 22:11

So sorry to hear that your dad has had to join our group. It is devastating news, I know. But once the diagnosis has properly sunk in, you will begin to realise that there is still a lot of living for your dad to do.

I was similarly diagnosed almost three years ago and I also was immediately put on to Degarelix. For some reason, I was not offered chemo at that time. I think it only became common practice after my diagnosis. My PSA dropped from 168 at diagnosis to 1.7 at its nadir. It lasted for 15 months, before my PSA started to rise again. I then went on to Abiraterone in conjunction with the Degarelix. My PSA started to drop dramatically again and this held for a further 10 months.

I believe, and perhaps someone more knowledgeable than me can confirm this, that early chemo (docetaxel) makes Degarelix work for longer, so your dad is on a good treatment plan.

I have had a round of late chemotherapy, which helped me for a while, but I am back to rising PSA again now. Even so, there are still further treatments I will be receiving in due course.

It is a long and rocky road, but with your help and the obvious love you have for your dad, he will thrive I am sure.

As a number of people on this forum pointed out to me three years ago, incurable does not mean terminal.

Best wishes

Peter

User

Posted 01 Jun 2018 at 09:23

Thank you so much Peter for your reply. I keep having major wobbles and need to steady my nerves so I can be the best possible support to Dad. Yes, I did wonder why chemo straight away, because reading many bio's on this forum it doesn't seem the norm and it'll be a question I ask the Oncologist when we meet. Like you say, perhaps it's the new pathway. When you first receive news like this it's so difficult to get clarity of thought - my dad's a fit guy, he's 66 and retired last December. My little girl who is 6 absolutely worships him and I'm finding it hard to even consider what lies ahead but, like you say, there'a still a lot of living to do. His starting PSA was 55 and he's been on degarelix for just over 3 weeks now I think. I don't know if he'll be a candidate for any clinical trials, etc. I've not gone down the road of researching that yet. I'd pretty much gained an understanding of radiotherapy, etc from reading the toolkit on here, but now realise this isn't relevant to dad at this time. I think I need to toughen up a bit and be more like my dad. I wish you all the best with your treatment and thanks again for taking the time to reply with such positivity x

User

Posted 01 Jun 2018 at 13:59

User

Posted 01 Jun 2018 at 22:01

Thanks Geoff, as much as I don't want other blokes to be in the same boat as my dad, it is comforting to know he's not alone as others walk this path. Did you have a course of 6 treatments when going through chemo? The Urologist said that's what he'd be having over a period of 18 weeks. He'll meet the Oncologist soon who I'm sure will explain it in more detail. Glad your PSA is under control and you're doing ok x

User

Posted 02 Jun 2018 at 00:13

Hi Lisa,

All the best

Peter

User

Posted 02 Jun 2018 at 09:09

Hi Lisa ,my OH Gary was 55 at diagnosis in Dec 15,PSA 23 gleason 4/5 (9) with lymph node involvement, not suitable for op so started on hormones then 6 rounds of chemo ,which he tolerated extremely well continuing to work all the way through treatment.
He is now 2 years on from the end of the chemo and in all that time his PSA has remained at 0.01. (Undetectable) .
Gary has also been on the stampede trial arm j and has extra meds and monitoring (which is great )
that make him feel fatigued but he is still working full time ( a bit slower than before ) .i hope this helps to ease your worries .
Keep asking questions if unsure about anything and plenty of people on here are more than willing to help .
Best wishes
Debby

User

Posted 02 Jun 2018 at 09:19

Thanks Debby, it's great to hear Gary has tolerated the treatment well and his psa remains undetectable. The fact he continues to work full time too is a real achievement. I'm so thankful for this forum, it provides real support to family members supporting loved ones as well as the real warriors who've been dealt a bloody rough deal x

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Posted 02 Jun 2018 at 11:04

User

Posted 02 Jun 2018 at 16:20

Thanks Geoff, the workshop sounds a good idea. If Lancaster doesn't offer it I might just come back to you with a few Q's. The MacMillan nurse didn't mention it on Wednesday but did tell dad to buy a really good thermometer for home to keep a regular check on his temp during treatment.

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