hormone refactory - continued treatment next step

User

Posted 03 Apr 2016 at 10:45

Hi Lesley

This must be a very worrying time for you both. PSA rise is almost expected for men starting Docetaxel chemo with a high figure. By cycle 4 or 5 Your Onco should know if the chemo is working, he may call for more scans to back up his thinking. He may even decide to extend the course to 8 or even 10 cycles if he feels it is working and just needs more time. Sadly there is also the possibility that he decides that palliative chemo is not actually helping much and is putting Bob through all those side effects for no real benefit.

There are still more options one of these is Radium 223. It has had some significant benefits for men here on the forum, you have to have been down the chemo route to qualify for it so Bob may be offered that next. The main thing is to keep Bob feeling reasonably well despite his PSA levels.

I see Julie has sent you the cuddle blanket, it has done the rounds over the years but it signifies our solidarity it lets you know we are all thinking of you and will be here to try and offer you any support we can.

I will be thinking of you and hoping that rounds 5 and 6 hail that knock down punch.

All my very best wishes

xxxx

User

Posted 03 Apr 2016 at 10:45

Arrh Julie thanks so much for sharing the comfort blanket. Received better than 1st class post, sunday delivery free and sent with love,kindness and support! 😊 It's a tough old journey at times as you all very well know. I cannot express enough how apreciative I am of your comments and support, lyn, devonmaid and Julie.

Devonmaid - work isnt easy on top of everything but is, should i say, tolerable. The team I work with now are a great support and although I am experienced at what I do they are happy to take the lead. There has been a recent announcement that our dept is to close in 6 months and this is a bit unsettling as not long moved from another closed dept! I don't like leaving bob but I think he does like a little bit of space from me!!😉 I work part time so he doesn't get too much freedom!!! Lol.

Stilboestril (can never spell that d..m word) was stopped pre starting chemo. It's so good to see J is still doing well with his. Have still got fingers/ toes crossed that cancer is responding to chemo but maybe enzalutamide or possible radium maybe an option. Will cross that bridge when it arrives.

I totally agree, barmouth was a much safer BREAK! than skiing!! Good therapy for both of us lyn. Must start thinking about another little break soon.

Lesley xx

User

Posted 03 Apr 2016 at 13:26

Hi mo

It is a bit worrying but am trying to hang onto the view that it could be the dead cancer cells producing psa.

Thank you so much for your kind, informative and Frank post. Hadn't thought of the possibility extending the chemo course.

I am endeavouring to stay hopeful and positive.

I don't know when and who thought of the comfort blanket but it is such an ingenious idea. It is so lovely to feel the solidarity of every one on here all to ready to help and show support when it's so needed.

Hope you are keeping well mo and have some good travel plans for the summer.

Lesley xx

User

Posted 03 Apr 2016 at 21:44

So glad that you received the blanket Lesley

I know it is a bit tatty but it has been all over the country , I did give it a a wash on the delicate cycle before I sent it , just to give it a freshen. If you wrap it around your shoulders when you are feeling low you will be able to feel the love from all of us.

When you have finished with it if you could pass it on to Devonmaid rumour has it she is pretty good with a needle and thread and I did notice that it needs some blanket stitching on the edges , it is just a little bit frayed .

I am not sure where or who first made it but what I do no is it realy does help to give comfort when it is needed.

If you could manage to not spill anything on it that would be great.😚

Stay strong , and if you can't stay strong then wrap up in the blanket.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Apr 2016 at 22:33

Julie

Many many thanks!It's the most beautiful blanket I've ever received. Im very sorry though I've already spilt on it, it's soaking wet with tears. Tears that perhaps should be shed more often than they are. I promise to dry it out before I send it for repair to devonmaid.

Lesley xxxxx

User

Posted 04 Apr 2016 at 20:34

Lesley,

Sorry to hear of your struggles. It is though still all up for grabs. The PSA may start to respond and if it does suspect enzalutimide becomes the better choice. If it dosn't and cancer seen as still active, radium 223 works best in those circumstances. So still options. I follow you with interest as I am not far behind you and really hope things will begin to pick up. I'll watch this space with hope!

User

Posted 04 Apr 2016 at 21:18

No rush with the blanket Lesley, A few stitches in the right place (I'll use a nice silk thread I think) will have it back in action in no time. I heard that this particular blanket has magic properties, it absorbs sorrow and fills the wearer with love and hugs (as Julie says), no amount of washing, delicate or not, ever takes away its special properties. Our blanket has comforted many of us and now it's your turn.

With love

Devonmaid xxxx

User

Posted 27 Jun 2016 at 17:14

Hi all

Feel its time to update you all on our progress. As the patern continues mixed good and not so good.

Well!!Here we go! Since April's postings bobs PSA has continued to rise, it's now 609! Urgh. (catching up with Trevor readings, julie!). ALP - 107 so remaining within normal limit. Bonescan done- awaiting results and bob is continuing with an extra 4 cycles of doxetaxil, just had chemo 8. I'm afraid I cannot deny this is a little worrying and bob is feeling bit fed up and quite scared.

So medically that was the not so good but for life experiences despite bob feeling crapp he is so living life. We had a few days in Cornwall and walked along some beautiful coast lines. He also went away with my son for what I call 'a man day' to the Goodwood fast car festival. What a fab time they had,went on a helicopter ride (very jelous I was). Also he didn't tell me until after that he went as a passenger in a rally car. Apparently there were warning signs saying anybody with neck or back problems should not take part. I think metastases throughout spine would come into that category!! I gave him a telling off! Lol.He is a law unto himself!!Ha ha

I hope this gives inspiration to others that having advanced cancer should not entirely restrict your life. But I also say please be safe in what you do, us ladies do stress!!!

Take care all

Lesley xx

User

Posted 27 Jun 2016 at 17:49

Loved your post Lesley, not the PSA rise bit but the getting on with life part for those of us who drew the short straw on this journey it is so important to make every moment count. Know what you mean though about the daft things our men get up to but I have to admit they sure are living in the moment.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 27 Jun 2016 at 18:16

I am so impressed that both your men get on with their lives, not just living it - but living in the fast lane!!

Well done to them both

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

User

Posted 27 Jun 2016 at 19:40

Topgun was always reminding us 'life is for living' and it seems Bob subscribes to the same point of view. John climbed kilimanjaro in between RP and salvage RT/HT - I didn't want him to do it but I think it was really important to him to simply feel normal.

Not great news about the PSA but these rises do sometimes happen as the cancer cells scream and object to the chemo - just hold on to the thought that they are being damaged beyond repair, cell by cell.

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

User

Posted 28 Jun 2016 at 09:36

Hi Julie, Sandra, lyn,

Thanks for your lovely comments. I will continue to support bob to live his life to the full and endeavour to maintain his wonderful positive attitude.Even if his being normal is being a bit mad!!Maybe next time I should go and be a bit mad with him!!lol.

Fingers crossed that maybe next blood test will see a possible levelling out of psa and alp continues to be stable.

Lesley xx

User

Posted 28 Jun 2016 at 16:21

Great post! My OH just about to start cabazitaxel after HT, enza and docetaxel failed. Wondering what to do about caravan hols booked but hoping to carry on now!

Glen

User

Posted 28 Jun 2016 at 16:48

That's good to hear my dad was diagnosed last Tuesday with a gleeson score of the same 4-5 we are just about to start this journey. They said it's an aggressive cancer is that what the result is or is that something else we need to be worried about? It's spread to his lymph nodes and looks like bones too although he has bone scan tomorrow so fingers crossed. He is determined to keep positive as are we all, reading stories like your certainly helps thank you and good wishes

Amanda

User

Posted 28 Jun 2016 at 17:27

Hi Amanda

I am sorry to hear of your dad's diagnosis. Starting out on this journey is always the scariest time. Once your dad starts on his treatment plan and starts seeing a respons he will come to terms bether wit his diagnosis. There are many men on this site like bob who have responded well to treatments and although we know,for bob,he will never be cured we hope the control of the disease continues for as long as possible.By reading others stories you will see there are many treatment options.

Will try to explain the Gleason scoring but although I understand I'm not the best at putting into words. The higher the numbers the more aggressive the cells are, the first number indicates what the majority of the cells are then the second number indicates the second most common cells. So if the Gleason score of 5-4 would be worse than the 4-5.The lower the scores the less aggressive the cells are.

Downloading the tool kit from this site is a good idea and speaking to the lovely specialist nurses is most helpful.

I wish your dad well with his treatment plan. Hope I have helped.

Take care Amanda

Lesley xx

User

Posted 28 Jun 2016 at 17:33

Thank you Lesley I apprivciate you taking the time to reply and explain the Gleeson score. As you say it is the Unknown and what lies ahead as everyone is different.

Thanks again for your kind words of incouragement good wishes to you both

Amanda x

User

Posted 28 Jun 2016 at 17:41

Hi Glen

Ooo caravan hols, we love our caravan expeditions out into the beautiful English countryside. I do hope you are able to still get away, suppose depends how he gets on with side effects and whether they may consider to delay a treatment. Holidays are good therapy. Hope all goes smoothly with the cabazitaxel, this may be one of our next options.

Take care Glen

Lesley xx

User

Posted 28 Jun 2016 at 18:01

Wonderful to hear you are getting every ounce (or gram) out of life despite the PSA. Keep on going!

Rosy x

User

Posted 28 Jun 2016 at 18:39

Glen, I hope you get away in your caravan, and I can't see why you shouldn't. Tony has had few side effects from his first dose of Cabazitaxel (75% of full dose), apart from being anaemic and weak, and he can't walk far or fast. He is also getting a bit achy in his limbs. and often takes painkillers in the evening.

We have just had a four-night break in Dublin (flying from Exeter) and had a really nice time, doing lots of sightseeing and strolling around . The thing we did try to watch is the risk of picking up infections in the middle of the course, so it's probably best to plan any trips after about Day 10.

Tony has just had blood tests, so once we know what they tell us, and whether he's fit for his second infusion, I'll post again in the thread I started earlier this month.

Marje

Edited by member 28 Jun 2016 at 18:39 | Reason: Not specified

User

Posted 29 Jun 2016 at 19:02

Hi marje

Four nights in Dublin,sounds good. I hadn't realised your OH had stared cabazitaxel (it's so easy to miss peoples new threads). Have followed a previous thread of yours,wishing you both all the best with your new course to treatment.

Take care

Lesley xx

User

Posted 30 Jun 2016 at 09:59

I love that Bob continues to cock a snoop at the cancer (I know it worrying and not dismissing that) but his joie de vivre and way of living life has me loving that man! I wish for small things like a walk, but in our case I can't ever imagine that happening again. I think that the cancer is bad but the side effects of the treatment can be equally debilitating. Lovely to hear that you are both living and doing what you love, despite the cancer and chemo.

Lots of love

Devonmaid xxxx

User

Posted 13 Jul 2016 at 21:01

Hi to all you lovely people

Well it's time for the change!!Bob has completed 8 cycles of docetaxel with ever increasing psa. His recent bone scan showed that there is evidence of new boney cancer deposits now in skull. PSA - 780 now!!!

So here goes tomorrow the start of cabitaxel journey. Always a bit scary changing treatments but maybe we will be lucky enough to see some decline in psa readings.

We both remain forever hopeful.

Love to to all

Lesley xx

User

Posted 13 Jul 2016 at 22:50

Hi there

So things are not looking fantastic, but another new treatment may be just the ticket. Nobody knows until they try.

It's great that you remain positive throughout but make sure you look after yourself too.

Xxx

User

Posted 14 Jul 2016 at 07:39

It must be very disheartening to see 8 rounds of Chemo having no effect and the cancer just accelerate away again. Very best wishes with the new drug and fingers crossed from me.
Chris

User

Posted 14 Jul 2016 at 20:02

Thanks Mo and Chris for your caring comments.

Cycle 1 of cabitaxel went ok today, feeling quite tired now. Fingers crossed that side effects will be as tolerable as they were for the docetaxel. Bob would be very grateful if maybe he doesn't have to suffer that horrid metal taste.

Mo, thanks for your kind concern, I am looking after myself.☺🍟🍰🍷🍷🍷🍷🍷 👍

Take care all

Lesley xx

User

Posted 14 Jul 2016 at 23:14

Fingers crossed from me too. Thinking of you both x

User

Posted 15 Jul 2016 at 17:06

Hi Lesley,

I have everything crossed for you I know what you mean about changing treatments it just brings more unknowns . Keep your chin up we are all rooting for you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Jul 2016 at 09:31

Hi Lesley, scary times but hopefully this latest throw of the dice will give some relief and extend your time. You can but try and hope for signs of success. Thinking of you.

User

Posted 16 Jul 2016 at 09:50

I do feel for you, Lesley, it is gutting to undergo a treatment only to find that it has apparently had no effect. I do hope the cabazitaxel does its job and slows things down a bit.
Marje

User

Posted 16 Jul 2016 at 11:39

Hi Lesley

Our thoughts are with you both too. Hope all goes well with the new treatment.

Debbie x

User

Posted 16 Jul 2016 at 13:54

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 15:35

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 21:44

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

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 21:55

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 22:01

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 23:40

Lesley,

I am sorry to read this . I am thinking of you

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 22 Jun 2017 at 00:12

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

Barry

User

Posted 22 Jun 2017 at 15:21

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 20:14

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 22:18

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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hormone refactory - continued treatment next step

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