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hormone refactory - continued treatment next step

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User

Posted 16 Jul 2016 at 12:54

Thank you to all of you such kind people. Your comments and support are so much appreciated.
Maybe we should divert our thoughts into doing a few mad exciting things, well perhaps not too mad! Another few trips in our caravan would be quite nice.
Always endeavouring to stay hopeful despite understanding the reality of our journey.
Lesley xx

User

Posted 16 Jul 2016 at 14:35

You don't have to go crazy, but we find that a short break away from home and the usual routine can be very refreshing. A caravan gives you the chance to take things at your own pace and for Bob to rest up whenever he likes. Just going away to a place where no one know about the cancer can help you to put it to the back of your minds - it's great to have lots of supportive and understanding people around you, but sometimes it can be wearing just accepting all the sympathy and telling people how things are progressing. We've had four or five short breaks in the last year or so, as well as two overseas holidays. We haven't given up on the short-break plan, and may try to arrange something when Tony's treatment settles down one way or another.

Marje

User

Posted 16 Jul 2016 at 20:44

You've got such a lovely attitude and that helps enormously. I'm hoping and praying that Cabazitaxel dos the trick and knocks that PSA down to manageable levels. Thinking of you both
Lots of love
Devonmaid xxxx

User

Posted 15 Dec 2016 at 21:56

Hi to all you lovely people,
It's been a little while since posting so think it's high time for an update. Things have been more difficult, cabitaxel has weakened bob considerably or maybe it's the cancer.
We delayed chemo 2 and got away to france for a lovely family holiday.Bob being bob insisted on joining in at the water park going down many slides then surprise surprise developed back pain!!! We travelled home earlier than expected. Long story short the mri of his spine was clear, thank goodness.
The Carbitaxel has reduced his appetite, has wt loss, sleeps a lot and his mobility is reduced due to reduced muscle strength. Along with this seeing the psa continually rising(see profile) has taken its psychological toll on both of us. It was at this point we visited our gp. He prescibed antidepressant and refered bob to mcmillan nurses for support.
Well, what a sense of relief it has given to me. It has taken such a weight off my shoulders. A most lovely mcmillan nurse visited us, she has prescibed a 2 week temporary course of dexamethasone(instead of the prednisalone) to boost bobs appetite so that he can enjoy a xmas dinner. She has completed form to get diability parking badge, odered us a wheelchair(bob pulled a face at this but accepted) and refered us to hospice day care for physio.
To end on a little bit more positve note the last PSA has come down slightly from 1666 to 1610 so just maybe the cancer is starting to respond to the Carbitaxel. We can endeavour to be hopeful.
Wishing everyone well with their treatments. Think of many of you often.
Lesley xxx

User

Posted 15 Dec 2016 at 22:27

Blooming heck Lesley water slides, ( what are these men like) 😄
Loved your update it just just goes to show that life with pca water slides and all can still be lived and be fun.
Brilliant news re the bone scan it just goes to show that even with such a high PSA nothing is predermined.

I am still waiting for the McMilan nurses to contact us but as you say just to feel that someone is there for you gives such a boost when we are feeling low.
So from one frazzled wife too another . Much strength , love and the odd comfort blanket thrown in.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Dec 2016 at 22:34

Lesley lovely to hear from you and though when in chemo treatment it's not good at least there is a little progress. As you may know I have had a great run this year with just HT and dexamethosone. Ensor has been kept in the box and the PSA has gone down and I have felt much much better. Also my appetite is good generally. So hope he gets a positive buzz from it over Christmas and you can enjoy some time together.

User

Posted 15 Dec 2016 at 22:48

Glad think hear your update, Lesley. It's good to know that you're bith getting a bit of TLC to help you make the most of the Christmas holiday period together. The good times are very precious now, so make the most of them and have a lovely time together.

User

Posted 15 Dec 2016 at 23:21

Julie, hope mcmillan contact you soon, we can't rate them higher. I know they will be a great help to you and Trevor.
Take care.

Paul, it's so good to hear that the ht along with the dexamethasone is still working for you. Our xmas decorations are up though I did curse bob for trying to put ceiling lights up standing alone on the back of the sofa while i was out at work.Will have to watch out the dexamethasone doesn't give him too much of a buzz!!lol

Marje, making the most of every precious memory we make. Hope you are taking good care of yourself too.xx

Thanks all xxx

User

Posted 29 Dec 2016 at 22:18

Hi folks
Hope xmas brought some happy times and beautiful memories for most of you.
In my previous post I explained bob hit quite a low, not eating, wt loss, sleeping a lot. Gp prescibed anti depressant and refered us to mcmillan nurse who started bob on shot course of dexamethasone.
Moving on 2 weeks to xmas I am so pleased to tell you all that bob enjoyed his xmas dinner with the family and even had a second helping. He has put on 7lbs and feeling a little more uplifted. Thanks to the lovely mcmillan nurse for helping improve his quality of life and giving him a little boost before our next new years challenges.
Wishing everyone all the best in the new year, live life to the full and make many lovely memories.
Take care all
Lesley xxx

User

Posted 29 Dec 2016 at 22:38

Lovely to read your update Lesley.
Making memories is what it's all about , I am so glad that Bob enjoyed his Xmas dinner and is feeling stronger.
New year here we come.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 29 Dec 2016 at 23:19

That is such lovely cheerful news! I can't wish you any more happiness for 2017. Enjoy every minute x

If life gives you lemons , then make lemonade

User

Posted 30 Dec 2016 at 03:03

It is good stuff this dexamethosone! Great it gave you both a better Xmas!

User

Posted 30 Dec 2016 at 07:45

Originally Posted by: Online Community Member

I am so pleased to tell you all that bob enjoyed his xmas dinner with the family and even had a second helping. He has put on 7lbs and feeling a little more uplifted.

Hooray!

User

Posted 21 Jun 2017 at 20:55

Hi to all you lovely people.
It's been a while since I've posted or even read any of your posts. I do feel a bit guilty for sort of turning my back on this wonderful site with all you so supportative guys.
I feel it is time to update and complete my lovely husbands fight on here (have briefly uplated his profile)
Bob srted becoming physically weaker from January onwards though mentally he kept fighting on.He had times where he lost his speach and cognition became poor. On admission and from an mri scan they found him to have brain dura metastasis. High dose steroids helped followed by a course of radiotherapy. He continued to get weaker.
We cared for him at home with help from wonderful mcmillan nurses but he needed more care than we could give him. He was then admitted to our local hospice where he received outstanding care.
I am very sad to let you all knoe that my wonderful, inspirational husband who fought on till his very last breath passed away peacefully on the 8th April.
I am slowly moving on though it is tough. I stay positive as bob would have wanted me to be for our 3 wonderful kids. And I celebrate how lucky he was to contine living a good quality life for 6 and a half years following diagnosis Gleason 9 with boney and lymph node secondaries.
I hope to continue following your stories and hope I can offer some help and support to others.
Love to all.
Lesley xx

User

Posted 21 Jun 2017 at 21:01

Lesley I am so sorry to read your news. Brain mets are so difficult to manage.

You have been so strong and now you will need time to find your new normal - you will never stop loving Bob but you will find a way to move forward xxx

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

User

Posted 21 Jun 2017 at 22:40

Lesley,
I am sorry to read this . I am thinking of you
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 21 Jun 2017 at 23:12

My condolences Lesley. So sorry you have lost Bob to this rotten disease.

Barry

User

Posted 22 Jun 2017 at 14:21

I am sorry for your loss Lesley. This disease is difficult to deal with. Sending you and your family love and good wishes as you deal with this. Ian.

Ido4

User

Posted 22 Jun 2017 at 19:14

So very sorry to hear your sad news. Sending my condolences to you and your family. Take care
Debbie x

User

Posted 22 Jun 2017 at 21:18

Oh Lesley, I am so sorry to hear this news. I don't come here often any more either, just find it very hard at times.

My sincere condolences on your terrible loss
Love Devonmaid xxxx

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