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Husband age 54 stage 4

User
Posted 19 March 2017 23:33:03(UTC)
I'm just looking for support really. It's early days, at the moment we're waiting for the first oncology appointment. My husband was diagnosed with advanced pc last Thursday. His Psa is 104,gleason is 10,he has metastases in both his pelvic bone and left femur. It's feeling pretty grim.
He has been signed off work for two weeks, he is very fatigued. Urology has passed us to oncology as he is inoperable.
Has anyone got anything positive to share. I am feeling very sad. We have 2 children 13,15 and are waiting for a treatment plan before we talk to them. I haven't posted to forums before, please excuse any mistakes.
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User
Posted 19 March 2017 23:33:03(UTC)
I'm just looking for support really. It's early days, at the moment we're waiting for the first oncology appointment. My husband was diagnosed with advanced pc last Thursday. His Psa is 104,gleason is 10,he has metastases in both his pelvic bone and left femur. It's feeling pretty grim.
He has been signed off work for two weeks, he is very fatigued. Urology has passed us to oncology as he is inoperable.
Has anyone got anything positive to share. I am feeling very sad. We have 2 children 13,15 and are waiting for a treatment plan before we talk to them. I haven't posted to forums before, please excuse any mistakes.
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User
Posted 20 March 2017 06:46:10(UTC)
Hi the wife
Sorry to hear you have had to join this forum but you will find so much help, advice and support from everyone on this site, I am the daughter of someone with this disease although my dad is at a different staging so unfortunately I don't feel I can offer any real knowledge and advice but I'm hear to offer emotional support, I'm bumping you up and no doubt other more knowledgeable members will be along soon to chat with you,
take care
Viv x
The only time you should look back is to see how far you have come
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User
Posted 20 March 2017 07:03:29(UTC)

Oh yes Wife, I can offer you hope.

I've got advanced prostate cancer just like your hubby. I'm a Gleason 9, just 1 less than hubby, so not much different. It's nearly 4 years since I was diagnosed and I'm still here!. There's loads the medics can do to keep me and hubby going for a good while yet.

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User
Posted 20 March 2017 06:46:10(UTC)
Hi the wife
Sorry to hear you have had to join this forum but you will find so much help, advice and support from everyone on this site, I am the daughter of someone with this disease although my dad is at a different staging so unfortunately I don't feel I can offer any real knowledge and advice but I'm hear to offer emotional support, I'm bumping you up and no doubt other more knowledgeable members will be along soon to chat with you,
take care
Viv x
The only time you should look back is to see how far you have come
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User
Posted 20 March 2017 07:03:29(UTC)

Oh yes Wife, I can offer you hope.

I've got advanced prostate cancer just like your hubby. I'm a Gleason 9, just 1 less than hubby, so not much different. It's nearly 4 years since I was diagnosed and I'm still here!. There's loads the medics can do to keep me and hubby going for a good while yet.

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User
Posted 20 March 2017 07:06:48(UTC)

Hi Wife
The most terrible news for you I know and I'm really sorry. My cancer is T4 but locally advanced so not as bad as your hubbies yet. People in the same boat will be along to help you, who have survived many more years because of the effectiveness of modern treatments. My youngest is 6 so I know how you feel , but children are very resilient.
Once you have the plan you may feel more assured. Best wishes
Chris




If life gives you lemons , then make lemonade
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User
Posted 20 March 2017 07:36:59(UTC)


Hi wife ,my OH was diagnosed about 15 months ago with Gleason 9, his also was inoperable.at the time our world just felt like it was going to end and there was no hope .But after starting on hormones and then 6 sessions of chemo his PSA is undetectable.
During chemo Gary was still able to work just at a slower pace but only taking 1 day off due to fatigue ,he is still working full time in a manual job and enjoying life and our soon to be 3rd grandchild .
Please don't despair (easier said than done ) once treatment plan is in place and PSA levels drop it gets easier to cope with .
Gary is now on the stampede trial and is closely monitored with 4 weekly blood tests and 8 weekly onco apps .
Life is good even though a bit different to before .
Best wishes to you and your family
Debby

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User
Posted 20 March 2017 07:52:01(UTC)

Wife,

What is hubby's job? Does he work in the public sector or private sector? Might he be a member of a final salary pension scheme? I only ask because there may be some financial opportunities available regarding pensions.

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User
Posted 20 March 2017 08:55:51(UTC)

Hi Wife,

A hello form me as well. Initial dx is always the worst but once the onco team get a plan together it focus's you and your OH as a team as well. I was dx just about 2 years ago with PSA 294, Gleason 9 Mets in bones, pelvis, vertebrae and shoulders. The start is very scarey and when on HT and early chemo, six rounds. Have 2 girls younger than yours and felt there was no need to mention it to them. Your will be different.
The dx meant that OH and me talked a lot about it, discussed options and treatment and progress and then after a while we didn't have to speak about Pca at all. We got through chemo well, kept working and kept up exercise and reasonable diet. Was just sensible really. PSA went down but on rise again but have so many other treatments. Far as we are concerned going to be around for a long time. I had to get out of the mindset is it 5,10,15 years. Our life has continued and will do.
You will find lots of positive advise here on the Pca Journey.
steven

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User
Posted 20 March 2017 12:50:24(UTC)

What an amazing amount of support. Our story is different but all the best to you from another wife.
Julie

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User
Posted 20 March 2017 13:27:45(UTC)
ColU_Fc working for Brakes food distribution only had a pension with them for around 5 years. He has several small pension pots from previous employers. We need to see what we can do with them.
User
Posted 20 March 2017 14:30:39(UTC)

OK, what I was thinking isn't of any use to you. With final salary pension schemes there is usually a provision for requesting ill health retirement. The nice thing about most of these schemes is that they credit you with all the years you would have worked if you'd retired at normal retirement age.

I've learnt a lot about pensions over the last 30 years or so. I'm not an IFA but if you want someone to bounce ideas off then I'd be happy to advise although I would then urge you to take independent financial advice before making any final decisions.

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User
Posted 20 March 2017 18:58:31(UTC)
Thank you everyone, that's exactly what I needed. Next appointment date is 2/4/17,that seems like forever! We have had a letter today in which the urologist recommends to the oncologist OH for the STAMPEDE trial. I have had a quick read about the trial and gather this is adding chemo to HT. OH was signed off last week for 2 weeks, he's permanent nightshift and it's too tiring. He's still suffering from the biopsy 21/2/17 feeling very tender inside. He's normally so full of energy it's been quite a shock to both of us just how exhausted he is. As he isn't very technically minded I shall pass on your support and may post on his behalf in the future. Thank you all again. Xx
User
Posted 20 March 2017 22:36:55(UTC)
Hi The Wife,
So from one wife to another with hubbys with a pretty grim diagnosis although for you still early days and boy I remember them well and just how scary they can be.
A little about our story and you can click on peoples avatars (photos ) and you can read there journeys we call it a bio but you will get your head around all of the different and very new lingo.
So anyway Trevor was diagnosed ( 4 years this May) with a PSA of 13000 ext mets just about everywhere from his shoulders to his pelvis we have been on just about every treatment and yes we have had some very wobbly moments but the point of my story is to say he is still here / still going and most importantly still doing the school run for our boys 13 and 17 .
Please take heart I know you re still in that awful bubble of those terrifying early days but trust me on this there is lots of life after diagnosis.
Please keep posting I can honestly say that this forum has been a life line of support and information for me in the last 4 years.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 20 March 2017 23:09:02(UTC)

This is going to get very confusing with one member called The Wife and another called Thewife posting messages to each other!

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


User
Posted 21 March 2017 07:59:59(UTC)
I'll change it. :)
User
Posted 21 March 2017 08:12:26(UTC)
Changed from The Wife to Kentish.
User
Posted 21 March 2017 11:05:39(UTC)

Ha - hello Kentish x

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


User
Posted 21 March 2017 18:23:42(UTC)
Hi Kentish so sorry you find yourself here but on the other hand it is absolutely the best place for love care and sound advice from many people with lots of experience and positive stories. I don't post very much, I am no so good at it and end up posting in wrong places etc, but I read the posts every day for support and guidance. My husband was diagnosed I'm May 2015 he is stage 3 Gleason 10 and on HT and early chemo (6 cycles) he had his fourth infusion on Thursday. He is doing ok. It is very scary and we have been through a lot of emotional ups and downs. Funny enough one of the most difficult things, once we got our head around the diagnosis was the emotional dynamics between us. Graham has always been the one to care for me and has so much more patience. I am much more matter of fact, get on with it kind of person. So, he is hopeless at being in need of care sometimes and am out of my comfort zone being the carer. The point is though that we are both learning and adapting to the situation taking things a day at a time and gradually learning to be tolerant and kind to each other because essentially we are still the same people. I am amazed at how resilient we all are. You and your OH will get lots of support here and as lots of people have said there are so many treatments available to people these days that there is much positivity, when you can read through some of the posts. I know you are scared but there is great hope for the future.
Take care and very best wishes.
User
Posted 21 March 2017 18:23:44(UTC)
Hi Kentish so sorry you find yourself here but on the other hand it is absolutely the best place for love care and sound advice from many people with lots of experience and positive stories. I don't post very much, I am no so good at it and end up posting in wrong places etc, but I read the posts every day for support and guidance. My husband was diagnosed I'm May 2015 he is stage 3 Gleason 10 and on HT and early chemo (6 cycles) he had his fourth infusion on Thursday. He is doing ok. It is very scary and we have been through a lot of emotional ups and downs. Funny enough one of the most difficult things, once we got our head around the diagnosis was the emotional dynamics between us. Graham has always been the one to care for me and has so much more patience. I am much more matter of fact, get on with it kind of person. So, he is hopeless at being in need of care sometimes and am out of my comfort zone being the carer. The point is though that we are both learning and adapting to the situation taking things a day at a time and gradually learning to be tolerant and kind to each other because essentially we are still the same people. I am amazed at how resilient we all are. You and your OH will get lots of support here and as lots of people have said there are so many treatments available to people these days that there is much positivity, when you can read through some of the posts. I know you are scared but there is great hope for the future.
Take care and very best wishes.
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User
Posted 22 March 2017 21:06:39(UTC)

Thank you Mountain Stream. Likewise, my husband doesn't "do" poorly, usually just moans a bit and then goes to work anyway! I don't think he's taken a sick day for years. He's not a very patient person so we've had a few angry words regarding the fortnight wait for the next appointment. In the meantime he has decided to redecorate our daughters bedroom and the stairs, cue lots of mess and plaster falling off the walls. We've had a pep talk with one another around trying not to let "waiting" consume us, that in itself is exhausting. So gritty carpets it is and eau de gloss.

User
Posted 22 March 2017 22:40:44(UTC)

Makes me grateful for the fact that my OH is no more likely to decide to redecorate than he is to train to be a classical ballet dancer. The diagnosis has reinforced our mutual tendencies to do absolutely nothing around the house of a practical nature. On the other hand we are absolutely committed to putting the world to rights in the local, sitting in the sunshine, standing around aimlessly and bickering about nothing at all. Quite soothing really!

I agree with Mountain Stream - very sorry that you are having to deal with this tough diagnosis but I'm sure you'll find lots of good advice, kindness and comfort on this site. Like so many people I find it an absolute lifeline. So good to be able to say anything at all and be completely understood by people who are on the same journey.

Take care.

Hugs

Eleanor

x

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User
Posted 12 March 2018 00:40:22(UTC)
It's been a long year. I didn't feel like cataloging the journey, like many others here; we have been trying to get on with life regardless of pca.
Oh ended up being off work for 8 months, his fatigue was and still is dreadful. He had 6 cycles of docetaxel july-Oct and started a phased return to work in January. He still hasn't managed a full week and is on light duties. Latest oncology review 19/2/18 gave psa as 0.8 which is good. All other bloods were within "normal ranges" but iron was a bit low at 125.
We've upped the dark chocolate and red wine to combat this😃
Next appointment is in May. Oh is struggling to get through a day without napping, anyone have any advice on being able to improve this?
User
Posted 12 March 2018 07:17:57(UTC)

Hi Kentish, PCUK ran a programme a couple of years ago on fatigue and a few members were involved. It did seem to help so probably worth you giving the nurses a call on the number at the top of the website page.

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


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User
Posted 15 March 2018 20:03:17(UTC)
Hi Kentish
My hubby did the fatigue work with the PCUK teams and it did help him a lot at the time, it’s all about pacing and recording when you are tired and need a nap. I’ve found my hubby needs a nap most days and has done since diagnosis, the fatigue affects some much more then others, it’s a horrible side affect that many people can’t begin to understand. Definitely give the nurses a ring and see if they will put him on the programme, you never know, it might help.

Good luck
Devonmaid
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User
Posted 15 March 2018 20:41:40(UTC)
Kentish

I'm a bit younger than your OH. I've been on hormone therapy for three weeks and I'm exhausted. At first, I thought it was all in my head. But it must be the medication because I am wiped out. I find this odd as I thought I'd breeze through the HT. I'm phoning the PCUK nurses for a bit of guidance.

Ulsterman
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