hormone refactory - continued treatment next step

User

Posted 07 Mar 2015 at 13:35

Hi All, Feel it's time to share the progress of our journey again in the hope it helps others.

Quick review - bob diagnosed with advanced prostate cancer Oct 2010, Gleason score 4 + 5, mets in bones and lymph nodes, see profile for more details.

Dispite bobs high Gleason score he has had over four years wonderful years of active quality of life.

Arbireterone - been on this for approx 11 months, only side effects havevbeen the usual tiredness and muscle weakness. We were concerned at first about the politics of it effecting our accessibility to other medications in the future but for us I think it was the right course of treatment. Bob continued working full time, enjoyed family hols (skiing being not the most appropriate but never the less his favourite!! Ha ha), ran the Great North half marathon (he beat me and the kids!!), basically great life considering illness.

Things are changing.... psa rising, more difficulty in passing urine, awaiting ct and Bone scan results. Oncologist has prescribed tamalusin to help with passing urine. Has also started stilbestrol(oestrogen) last attempt at hormone meds before chemo. I said to bob he will be having periods starting next with all these hormones!! It made him smile ha ha.

Despite the above we are trying to stay positve and are still planing our ski holiday which is in three weeks, I know..... We are bonkers!!!But hey Ho life is for living.

Will update more when we get scan results as they may change our plan of treatment.

Lesley x

User

Posted 07 Mar 2015 at 13:35

Hi All, Feel it's time to share the progress of our journey again in the hope it helps others.

Quick review - bob diagnosed with advanced prostate cancer Oct 2010, Gleason score 4 + 5, mets in bones and lymph nodes, see profile for more details.

Dispite bobs high Gleason score he has had over four years wonderful years of active quality of life.

Despite the above we are trying to stay positve and are still planing our ski holiday which is in three weeks, I know..... We are bonkers!!!But hey Ho life is for living.

Will update more when we get scan results as they may change our plan of treatment.

Lesley x

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 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 07 Mar 2015 at 17:13

Lesley

it is great to hear you so upbeat despite Bob's latest progression. I love to hear when Men who are diagnosed with this disease at such an advanced stage do so well it gives a lot of hope to others.

Going skiing is really going for it when Bob has bone mets, I hope he is on Zometa to strengthen those bones!! If it were me I would sit at the end of the piste in a nice little establishment getting slightly piste so to speak!

I know of others who have found stilbestrol very good at keeping HT a viable option, not so sure about starting periods but when he starts throwing PMS hissy fits then at least you will know why!

User

Posted 07 Mar 2015 at 20:09

Hi lesley

So good to see your lovely, upbeat post despite everything, you and Bob truly do share the famous Topgun's outlook on "life is for Living".

John is on Stillbestrill and has been since October 2013. He has had some PSA rises and we will certainly have to change treatment soon, so it's been very effective. The downsides are the massive boobs he has grown on this treatment, which he hates, and which nothing seems to help and the tiredness, each treatment seems to make it worse but the alternative is much worse so he puts up with it all uncomplainingly. John would not have been able to work or ski or run half marathons but you sound like a super fit family and I'm sure that helps.

Please let us know how things go for you.

Lots of love

Allison

Edited by member 07 Mar 2015 at 20:10 | Reason: Not specified

User

Posted 08 Mar 2015 at 10:32

Hi mo and Alison, thanks so much for your posts, the info and kind words are so appreciated.

Mo, bob is on adcal d3 for bones and I've never even given zometa a thought. Will discuss with Oncologist when we next see in 3 Weeks. And mo, we will be finding many little establishments for a few little tipples!!! Ha ha.

Alison, lovely to see evidence of stilbestrol effect, it's very reassuring thank you.

SUPPER FIT family!! Think it's called been totally mad!!! Ha ha. We just love the outdoors, and it does help keep bob focused and active.

Will be glad to update of our progress and scan results.

Lesley xx

User

Posted 17 Mar 2015 at 20:47

Hi,

My Dad is a gleason 9 with lymph and bone spread, he was on zoladex which failed after 18 months, caodex never gave us the psa drop, in November he commenced on stillbisterol and dexamethasone, his psa was 14.9 and last week it had dropped to 4.1, he feels really well and is certainly living life to the full - he is currently sunning himself on his holidays. Really hope you get the positive results, may I ask was he on the abbey tabs as part of a trial?? Dad has never been offered them. ??

User

Posted 27 Mar 2015 at 18:51

Have a great holiday and best wishes for next stage,El.

User

Posted 27 Mar 2015 at 21:44

Brilliant news, have a wonderful holiday

Lots of love

Allison xxx

User

Posted 27 Mar 2015 at 22:54

Brilliant - I just hope the snow holds out for you. It hasn't been too great the last couple of weeks :-(

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

User

Posted 28 Mar 2015 at 04:01

Have fun Lesley, no snow in Hawaii ...yet?!!!

User

Posted 04 Sep 2015 at 00:26

Good luck with Bob's radiotherapy, weirdly I found it increased my positivity (more than the HT() because I considered it my attack on what is attacking me. Wish I had better words for boosting moral but it sounds like the Onco has a plan and it involves doing some serious harm to the beast. Go get em Bob, hurt that sucker.

Edited by member 04 Sep 2015 at 00:29 | Reason: Not specified

User

Posted 04 Sep 2015 at 08:26

Hi Lesley

you are entitled to feel a bit deflated, I think that is only natural when a treatment seems to stop working and you move on to something else.

Your Onco is taking positive steps and I like Mike's viewpoint too, hopefully RT is going to give the cancer a good bashing !

You will bounce back up to be there supporting Bob as you always do.

Meantime we are all here for you as well

best wishes

User

Posted 04 Sep 2015 at 11:02

Sorry to see things becoming unsettled for you Lesley I know that changing scenario all too clearly. I have read your profile and I am interested in RT as treatment which you appear to be starting. I understood the only RT I would get would be the odd single session for pain relief. That having advanced metatastic cancer ( my spread is in the bones no soft tissue spread as yet) ruled out RT as a treatment option. So quite intruded by this?

Hope it goes well as I shall follow bob's progress with interest.

User

Posted 19 Sep 2015 at 21:29

Good news then Lesley ..long may that continue

User

Posted 20 Sep 2015 at 00:30

Have a think about The Gambia Lesley - cheap, beautiful winter sunshine, happy people and good quality pharmacies just in case x

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

User

Posted 16 Nov 2015 at 08:47

Then I think it is wonderful - what a marvellous love of life he must have. I hope it all works out well x

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

User

Posted 07 Jan 2016 at 15:12

Hi Lesley,

As with all treatments, side effects affect everyone differently, you just dont know til you have the treatment. Dosages and gaps between chemo can be changed to accommodate severe side effects but then some men experience less than others. One way of looking at it is that chemo is going to knock the disease back hopefully and that in itself can be incentive to carry on ! Metallic taste in the mouth is a common symptom, many posters advise sucking frozen pineapple cubes during the treatment. Nail beds can become dry and sore so start moisturising finger and toenails daily with a good moisturiser, I used one specially for chemo, a blend of oils in a stick like a lip salve. Fatigue is very common, something that just has to be managed day to day if it is a problem, also, avoid anyone with a cold or similar infection at certain times, think it's a week after treatments as immune system will be weakened. Your chemo dept should give you a thorough discussion about all this. Do they have a 24 hour helpline you can ring with queries or concerns ? There are plenty of men on the forum who have had a relatively good experience of chemo so don't assume the worst. Very best of luck with the treatment. Regards,

Fiona.

User

Posted 07 Jan 2016 at 15:26

Hi Lesley,

Sorry to hear that things are not good at the moment.

I had 9 cycles of chemo and apart from everything tasting like rubber for about 5 days it was very doable.

I didn't get on with the high dose of steroids so i dumped them, managed to keep my hair with the use of the cold cap but lost it everywhere else.

My best wishes to Bob, i hope he finds the treatment bearable.

you never know he might be like Kev (irun) when he was on Chemo and start running marathons http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si x

Don't deny the diagnosis; try to defy the verdict

User

Posted 08 Jan 2016 at 20:31

Hi Lesley,

Sorry to hear Bob is progressing to the next stage on this uncertain journey. I still have the joys of chemo to come so cannot comment on the impact of it but do hope he can take it in his stride. Generally people seem to cope as long as the body can cope with it. Hope so because if it does it should be a positive outcome, I will be thinking of you both as you tackle this.

User

Posted 08 Jan 2016 at 21:41

Hi lesley
Met with oncology nurse for my 3mth HT jab different one from normal
We had a check re how my chemo was going
Biggest issue is the weight put on 1.5 stone
Still got a bit of hair left have only 1 more dose of 6 to go
Hair loss not to bad still have some on me head
Bit more fatigued then prior to starting chemo
Eating less also but making sure fluid level is good
Nurse said that I do not realise how well I have coped with the treatment
It was a treatment option i wanted and went into it determined to keep strong and focused
Have been odd times when i think otherwise but not many
Not sure if any of this helps but it is how i have been affected
Regards
Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 08 Jan 2016 at 21:51

Hi Harmony, it isn't always horrendous - Stan was 79 or 80 when he had chemo and he breezed through it apart from the problem of all food tasting like metal :-( His biggest issue was that his wife banned him from going to the pub in case he picked up germs .... it drove him stir-crazy.

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

User

Posted 09 Jan 2016 at 18:02

Harmony, my husband Tony had Docetaxel this time last year and didn't find it too bad. He didn't lose his sense of taste or stop enjoying his food, and he wasn't sick. He was tired at times, and lost what little hair he had, but remained in pretty good spirits throughout. He had some loss of sensation in his toes but that wore off once treatment had stopped.

Right at the end he picked up some sort of infection and we noticed a raised temperature, which triggered an urgent response from the hospital: he spent three days in an isolation ward having antibiotics, as his neutrophil count was dangerously low. Apart from that,nothing too alarming happened.

The actual infusion is not uncomfortable, just a bit boring. You sit in high-backed chairs in a room with various other patients all hooked up to intravenous drips etc, and the staff in our local unit are lovely. I used to drop him off there and go off to a local shopping centre, and come back to pick him up a couple of hours later. He was advised not to drive home in case he had a sore hand from the catheter, or the anithistamines they gave made him sleepy, but he hardly needed me there, he was fine.

I think the worst part of it was feeling that he was a patient all those weeks, and having to be careful about diet, hygiene, etc, and schedule things according to the ups and downs of the three-week cycle.

User

Posted 09 Jan 2016 at 20:45

This is a helpful description and makes it feel manageable if you are careful.

User

Posted 13 Feb 2016 at 11:46

Lesley not had chemo yet so cannot advise though I do expect the impact of chemo is cumulative. Maybe need to ask your onco in next visit. But being well and coping with it is of course important so good start otherwise. Others will give more specific advice.

User

Posted 13 Feb 2016 at 22:27

Hi Lesley,

I don't know anything about a flare with chemo but it does happen with some of the HT treatments so fingers crossed that this is what is happening.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Feb 2016 at 20:29

Hi Lesley

I'm so sorry to hear this. I don't know if this helps but I have seen people say here before that PSA after chemo can rise because dying cells give off more PSA. I hope that's the reason for such a large rise. When do you see a consultant next?

Lots of love

Allison xxx

User

Posted 15 Feb 2016 at 21:45

Hi all

Thank you for your kind replies, really appreciated.

This is such a learning curve, continually having to pick up new info to understand what is happening on this journey.I have been doing a bit of googling on psa flare during docetaxel. I know we have to be mindful of how reliable some of the sites are but it sounds like a small percentage of men having docetaxel can have this flare up during first 6 weeks.

Bob has just had 2nd cycle today so have my fingers crossed that maybe things will soon settle.

Will certainly be asking Oncologist on next visit about this increase in psa, Allison - 3 weeks time. Long time to wait for answers but hey Ho we must stay positive.

Do think of you all on each of your personal journeys.

Love to all, take care. Thanks again for your thoughts.

Lesley x

Edited by member 15 Feb 2016 at 22:40 | Reason: Not specified

User

Posted 02 Apr 2016 at 23:11

Hi Lesley,

Comfort blanket is on its way I have sent it first class post.

BFN

Julie x

NEVER LAUGH AT A LIVE DRAGON

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 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 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 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 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 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 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 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 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 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 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

User

Posted 22 Jun 2017 at 22:19

I'm so sorry for your loss Lesley. Bob sounded like a lovely brave man x

User

Posted 23 Jun 2017 at 12:07

Lesley sorry to hear your awful news. Bob must have suffered at the end so at least he is now at peace. RIP Bob. Lesley look after yourself wrap family and friends around yourself and celebrate Bob's life. Those memories are so precious. Thinking of you at this time.

User

Posted 23 Jun 2017 at 13:33

Sincere condolences to you and your family, Lesley, I was so sorry to read your news.

Kevan

Show Most Thanked Posts

User

Posted 07 Mar 2015 at 17:13

Lesley

it is great to hear you so upbeat despite Bob's latest progression. I love to hear when Men who are diagnosed with this disease at such an advanced stage do so well it gives a lot of hope to others.

I know of others who have found stilbestrol very good at keeping HT a viable option, not so sure about starting periods but when he starts throwing PMS hissy fits then at least you will know why!

User

Posted 07 Mar 2015 at 20:09

Hi lesley

So good to see your lovely, upbeat post despite everything, you and Bob truly do share the famous Topgun's outlook on "life is for Living".

Please let us know how things go for you.

Lots of love

Allison

Edited by member 07 Mar 2015 at 20:10 | Reason: Not specified

User

Posted 08 Mar 2015 at 10:32

Hi mo and Alison, thanks so much for your posts, the info and kind words are so appreciated.

Alison, lovely to see evidence of stilbestrol effect, it's very reassuring thank you.

SUPPER FIT family!! Think it's called been totally mad!!! Ha ha. We just love the outdoors, and it does help keep bob focused and active.

Will be glad to update of our progress and scan results.

Lesley xx

User

Posted 17 Mar 2015 at 20:47

Hi,

User

Posted 18 Mar 2015 at 20:31

Hi Jo,

It's really good to hear your dad is doing well on stilbestrol/dexamethasone and living his life to the full. Long may it continue for him.

To answer your question 'Were abbey tabs part of a trial?'.No they weren't part of a trial, they were offered as one of the next options of management following bob becoming hormone resistant. At the time it was an option pre chemo but am sure it's not available pre chemo now.

Bob has been on stilbestrol along with the abbey tabs and prednisalone for a few weeks now with no major side effects, just the usual fatigue.

Hoping for positive results, thanks Jo.

Lesley x

User

Posted 26 Mar 2015 at 22:45

Hi all,

Well the results are in, PSA down to 37.9 so the stilbestrol is working wooo hooo brilliant news.

Then we went for opa with consultant who gave us the scan results..... Further progression of cancer in bones and lymph glands, something also seen in bladder, thinks stone/ cancer. Plans to do flexi cystoscopy, discontinue abireterone and prednisalone, continue stilbestrol. Talked also about chemo being a possibility depending on next results.

It feels very strange, we are really happy that we have been given another treatment option which is starting to be effective. But are also a little apprehensive about possible bladder proB's.

After writing the above I have just given myself a good talking to and going to stay positive and not dwell on the scan results but celebrate the psa response to the stilbestrol.

We are going to enjoy our ski hols in french alps!

Hope alls well with everyone.

Lesley xx

User

Posted 27 Mar 2015 at 18:51

Have a great holiday and best wishes for next stage,El.

User

Posted 27 Mar 2015 at 21:44

Brilliant news, have a wonderful holiday

Lots of love

Allison xxx

User

Posted 27 Mar 2015 at 22:54

Brilliant - I just hope the snow holds out for you. It hasn't been too great the last couple of weeks :-(

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

User

Posted 28 Mar 2015 at 04:01

Have fun Lesley, no snow in Hawaii ...yet?!!!

User

Posted 29 Mar 2015 at 18:51

Hi all

Managed to find some wifi with help of kids as I am so not technical.

Thanks for all of your posts, been very lucky its sno wing very heavily at moment. Bob skied all day today so more than he expected to do, just some knee pain but dosed up well on Co Cocodamol. Having a fab time but hawait sun does sounds quitemail appealing.

Lesley xx

User

Posted 03 Sep 2015 at 23:16

Hi to all you lovely people,

Haven't posted for a while but feel it's time for an update and also feeling like I need a little more support as my roller coaster journey feels like it's dipping a bit.

Brief overview, have had good 12 months on aberetirone followed by about 4 months of stilbestrol. August PSA raised 33.1, ALP also raised maybe suggesting more bone activity and cancer not responding well to stilbestrol.

Seen Oncologist -planned 10 treatments of radiotherapy to bladder and prostate, to have zometa bone infusion then to follow with docetaxel chemo course.

Bob had zometa yesterday and is feeling flu like side effects today. He starts his radiotherapy tomorrow. He's always been very positive through his cancer journey but this is setting him back a bit.

I am feeling a bit deflated, have taken some time off work to support bob. Not exactly asking you all for information as I understand what is happening but think I just need a bit of moral support.I apologise as I usually end my posts positively talking about some kind of nice holiday I'm about to go on.

Lesley x

User

Posted 04 Sep 2015 at 00:26

Edited by member 04 Sep 2015 at 00:29 | Reason: Not specified

User

Posted 04 Sep 2015 at 07:41

morning

glad you understand whats happening, have read through your thread and think you and family are doing a great job, enjoy the future holidays

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 04 Sep 2015 at 08:26

Hi Lesley

you are entitled to feel a bit deflated, I think that is only natural when a treatment seems to stop working and you move on to something else.

Your Onco is taking positive steps and I like Mike's viewpoint too, hopefully RT is going to give the cancer a good bashing !

You will bounce back up to be there supporting Bob as you always do.

Meantime we are all here for you as well

best wishes

User

Posted 04 Sep 2015 at 11:02

Hope it goes well as I shall follow bob's progress with interest.

User

Posted 04 Sep 2015 at 19:30

Thanks so much to you all for your kind comments.

I like it that Oncologist is acting very aggressively to "hurt and kill the b******d suckers" (thanks Mike for the phrase which I'm very sorry I felt I had to expand) it is the change to quality of life that makes me very sad.

Bob didn't make his first radiotherapy appointment today. Unfortunately he has suffered terribly with side effects from the zometa infusion from wednesday- nausea, headache, bone and muscle pain. Am really hoping thsee side effects don't last too long. We've rescheduled radiotherapy for Monday.

Paul, I am just as confused as you are about the radiotherapy thing, I was of the same understanding as yourself. All I can think is that they are attacking hard at the primary site to help slow down further problems in this area, and chemo will fight every where else.Bob is having difficulty passing urine but only retains about 150mrs so no need for catheter at mo. Will ask at next appointment.

Have just set bob off on Internet looking at hotels for perhaps going away for couple of days to bournmouth at end of radiotherapy course. Hoping things go smoothly from monday.

Will keep all posted to our progress.

Thanks and love to all

Lesley xx

User

Posted 07 Sep 2015 at 21:28

Hi all

Just a short update.... Bob feeling more up beat today so this has had a lovely knock on effect to myself and the rest of the family.

To add a little bit of reassurance to those who I may of scared off ever having zometa(sorry), the side effects have subsided greatly and only lasted 4 days. We are going to ask for medication to alleviate side effects of next infusion although I believe 1st time of this is often worse so may be better next time anyway.

Alls well from first radiotherapy treatment so here's to positively hoping it continues.

Lesley x

User

Posted 19 Sep 2015 at 21:20

Hi all,

Well I'm happy to say bob survived his 10 treatments of radiotherapy to bladder and prostate. He hasn't suffered too badly with side effect either- mainly tiredness, mild irritation to bladder and bowels.

Seen by Oncologist - planned to repeat psa in 8 weeks then if that's stable he will review 3 monthly. We were really pleased with this plan as I thought chemo was automatically going to follow. So for now we conine with stilbestrol.

I am going back to work and letting bob have some peace and quiet from me ( well I may leave him a few jobs to do!!! Lol)

May be it's time to think about a little bit of winter sun away!! Better start saving some pennies! ;-))

All the best to everyone

Lesley x

User

Posted 19 Sep 2015 at 21:29

Good news then Lesley ..long may that continue

User

Posted 20 Sep 2015 at 00:30

Have a think about The Gambia Lesley - cheap, beautiful winter sunshine, happy people and good quality pharmacies just in case x

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

User

Posted 20 Sep 2015 at 20:33

Thanks Mo/Lyn

Lyn, was thinking of gran canaria and hadn't thought of gambia. Have Googled gambia and it does look beautiful and very reasonably priced.

Lesley x

User

Posted 14 Nov 2015 at 22:34

Hi to all you lovely people

Will start with the not so good news first - we didn't get away to any winter sun. Bob got a bit anxious about the flight effecting his next results (did reassure him it wouldnt) and we had some minor stresses with our 17yr old daughter. Felt it was better to stay at home.

So for the good news - we are 8 weeks post the high dose radiotherapy to prostate and bladder....drum rollllll. ........PSA down from 38.1 to 37.7 and ALP down from 158 to 103. The consultant is pleased with effects of the radiotherapy, so for now NO CHEMO!! Plan is to review blds in 2 months so we are pleased that he is also keeping a close eye on bob. Am sure this will give you guys in the advanced stages of this disease hope showing you an alternative effective treatment option.

Bob also has had his second zometa infusion given over an hour. He tolerated this much better than the first one. Instead of suffering 4 days of feeling quite ill he only felt off for 1 day.

And now for the madness. When Bob gets a good result he instantly starts planning holidays, which don't get me wrong, is lovely. It's the type of hols that worries me!! Hes looking at SKI-ING again!!! How can I tell him he can't go?!!! You men don't give us ladies an easy time!! Ha ha. It will be me that will be having a heart attack ;-)).

Wishing everyone well,

Lesley

User

Posted 15 Nov 2015 at 09:37

Hi Lesley, glad you are so upbeat and that your oh is as well.

Being positive is far better than negative, it stops the b*****d invader thinking it's got the upper hand.!!

Stay fighting it and long may you continue taking your holidays together.

Best wishes Chris/ Woody

Life seems different upside down, take another viewpoint

User

Posted 15 Nov 2015 at 10:50

Hi Lesley
It's certainly a roller coaster ride isn't it swhich you both seem to be handling the best way possible.

You give me much hope as I'm on a similar ride but a few years behind.
I started with psa of 235 with spread to pelvis and have been on Prostap & Enzalutamide since January this year. I did take abiraterone for the first 6 months but it was dropped after I had problems with ALT reading and then bowels.

I wonder if Enzalutamide is another alternative for Bob it's certainly helping keep my psa down at the moment and is usually offered after other treatments fail.

Maybe I'll see Bob at the next GNR?

All the very best and enjoy your holidays.

Paul

User

Posted 15 Nov 2015 at 11:42

Lesley

its great to see you posting and to hear that Bob is doing well. It was a shame about your holiday, Maybe you can get him to opt for a lazy beach holiday with sun somewhere close to home like the Canaries. If he is dead set on skiing the insurance quote might change his mind?!

Mick had a bit of an issue the first dose of Zometa but no problems at all with it after that.

Did you get all the warnings from your Onco about Zometa and dental treatment?

Hope you do get Bob to rethink the skiing,

User

Posted 15 Nov 2015 at 21:03

Thanks for your kind comments.

Chris, best way to be is positive! We didn't expect to get this far in our journey, and consider ourselves very lucky. I tend to use the outlook of "as one door closes another one will open" and never give up hope.

Paul, maybe enzalutamide would be an option for us in the future. Doing the GNR was a one off great achievement and experience but not to be repeated so will just look out for you on TV.

Mo, I would be quite content with some canaries sun. Insurance quote put him off going skiing??!!! I would like to think it would but oh no mo, hes mad and going without insurrance(well anything related to the prostate). Thanks for dental info. Lovely to see you're keeping busy with all your travelling.

Lesley xx

User

Posted 15 Nov 2015 at 22:33

I was going to say that I would be tempted to let him book the holiday and just cancel nearer the time if necessary (it's only money). But now I have seen your comment about him going without cover for anything prostate related I am doubting his sanity 😳

Has he considered that if he fell and broke his leg, they would probably argue that the break was more likely because of the cancer and you could end up with some very expensive medical bills. My brother died abroad without insurance and it cost many, many thousands of pounds to have his body flown home.

Is he perhaps thinking that he would like to go skiing but do more of the après-ski and less of the energetic stuff?

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

User

Posted 15 Nov 2015 at 23:21

Hi lyn

I admire my husbands determination to do all he wants to do but I am totally in agreement with you about his sanity!!

I have clearly told him of the risks of pathological fractures which he wouldn't be covered for, so he is fully aware.

We will book accommodation in advance, then either cancel nearer time or book everything else last minute.

My only saving grace is that he will become more eadily tired, as he did last yr, and will probably spent more time doing more (safe)apres skI activities. We also have the support of 16 friends/family with us.

Thanks lyn for your kind concerns of which I very much share.

Lesley x

User

Posted 16 Nov 2015 at 08:47

Then I think it is wonderful - what a marvellous love of life he must have. I hope it all works out well x

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

User

Posted 07 Jan 2016 at 14:51

Hi to all you lovely people.

Time for an update!!!

Well to start with we had a lovely family xmas and a quiet but nice new year. My new job transfer going well and working with some lovely people.

Bob has been feeling more tired and a bit off his food, feeling bloated after eating. Suspected maybe accumulation of side effects of medication or possible depression from the stress and worry the disease causes.

We've managed to avoid the need for chemotherapy for a lovely long time but unfortunately the time has come for a change in direction. Seen Oncologist today, PSA - 79(doubled in 2 months) and ALP - 200, bone scan shows further cancer activity. Plan - docetaxel 6 cycles to start in 2-3 weeks.Bob is gutted and very worried about The side effects he is going to suffer. He has asked me to ask what experiences good/bad you guys here have had.

I have to smile, bob asked the consultant if he could go skiing before starting chemo. You should have seen the consultants face. He very nicely explained the risks and said he wouldn't advise it! New holiday plan is much more sensible and to aim for a bit of southerly french sun on completion of chemo cycles.

Have been reading many of your threads, shed some tears with some of your trials and enjoyed smiling at your tribulations.

Sincerely wishing you all well.

Love to all

Lesley xx

User

Posted 07 Jan 2016 at 15:12

Hi Lesley,

Fiona.

User

Posted 07 Jan 2016 at 15:26

Hi Lesley,

Sorry to hear that things are not good at the moment.

I had 9 cycles of chemo and apart from everything tasting like rubber for about 5 days it was very doable.

I didn't get on with the high dose of steroids so i dumped them, managed to keep my hair with the use of the cold cap but lost it everywhere else.

My best wishes to Bob, i hope he finds the treatment bearable.

you never know he might be like Kev (irun) when he was on Chemo and start running marathons http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si x

Don't deny the diagnosis; try to defy the verdict

User

Posted 08 Jan 2016 at 19:42

Hi fiona and si.

Thank you so much for your kind replies.Have read your comments out to bob and he is very appreciative of the useful info you have given. I have read in the past a few threads on chemo but it's not easy to back track and find those threads.

This feels a very strange time for us and we have many emotions going on at moment. We're pleased we are getting good active treatment to kill the b•••••s. But knowing it moves to the next step of our journey is scary and a bit upsetting.

We are usually planning holidays and making holiday lists now. We will have put a delay on this at mo, although we do hope to do a southern france holiday hopefully in the summer on completion of the chemo course.

So for now instead of writing a holiday list we will write our medical list - thermometer, moisture cream, frozen pineapple. Am smiling now si, perhaps won't put marathon running kit on the list and just stick to walking in our comfy casuals!! Lol

Thank you again fiona and si, you are both very kind people. Will also thank you lovely readers for your kind thoughts.

Lesley xx

User

Posted 08 Jan 2016 at 20:31

Hi Lesley,

User

Posted 08 Jan 2016 at 21:41

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 08 Jan 2016 at 21:51

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

User

Posted 09 Jan 2016 at 18:02

User

Posted 09 Jan 2016 at 20:45

This is a helpful description and makes it feel manageable if you are careful.

User

Posted 09 Jan 2016 at 22:18

Hi to you all,

Again thanks for all of your comments, I can't express enough how appreciative we are for them.

Our minds are becoming more positively focused to face the oncoming chemo treatment. From your experiences we are certainly more reassured that it will be manageable.

Think I may be a bit obsessive with the cleaning regime, that's just given me something else to add to my medical list - cleaning products!!

I will keep you updated as to our progress.

Best wishes to you all.

Lesley x

User

Posted 13 Feb 2016 at 09:39

Hi all,

Time to update, some good, some not so good. Hoping for some advice on the maybe/or maybe not so good.

Well firstly, good. Chemo cycle 1 went a lot better than expected with no bad side effects at all.Still a head full of hair, no nausea/sickness, no infections. More tiredness has been the only minor problem. We didn't venture out a lot but did treat ourselves to a visit to the Black Country Museum. Well I can highly recommend this to anybody coming to this area, it's amazing how long you can live in an area and not visit your own local attractions.

Now for the not so good!! Latest blood test pre next course of chemo shows the ALP- down a little from 200 to 185, but PSA - shot up from 78 to 197.6. Not sure what to think really, might it be a initial flare up in first response to chemo and will settle after next treatment or is it that the cancer may not be responding to treatment. Next chemo on 15th.

Any thoughts my friends?

As always best wishes to you all.

Lesley x

User

Posted 13 Feb 2016 at 11:46

User

Posted 13 Feb 2016 at 22:27

Hi Lesley,

I don't know anything about a flare with chemo but it does happen with some of the HT treatments so fingers crossed that this is what is happening.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Feb 2016 at 20:29

Hi Lesley

Lots of love

Allison xxx

User

Posted 15 Feb 2016 at 21:45

Hi all

Thank you for your kind replies, really appreciated.

Bob has just had 2nd cycle today so have my fingers crossed that maybe things will soon settle.

Will certainly be asking Oncologist on next visit about this increase in psa, Allison - 3 weeks time. Long time to wait for answers but hey Ho we must stay positive.

Do think of you all on each of your personal journeys.

Love to all, take care. Thanks again for your thoughts.

Lesley x

Edited by member 15 Feb 2016 at 22:40 | Reason: Not specified

User

Posted 02 Apr 2016 at 12:20

Hi all,

Mixed feelings my friends but will endeavour to stay positve. PSA now at 262 so has risen again quite considerably. We have spoken to Oncologist and his reassuring comment was not to be concerned at this stage as PSA can be all over the place. Also said,as devonmaid you commented,dead cancer cells produce psa. My god there must have been a lot of cancer cells was my thought!!! He will plan scans at end of chemo course to reassess progress.Still feel a little anxious despite consultants advice but, hey Ho, we must try to stay focussed and positve.

Bob has just had cycle 4, doing ok. Side effects are still manageable athough somewhat worse as we progress through the cycles.More tiredness and more hair coming out, perhaps more gut ache.

We did get a lovely couple of days away to barmouth, great therapy for both of us. Few glasses of wine for me!!!😊😉

Love to all

Lesley xx

Edited by member 27 Jun 2016 at 16:23 | Reason: Not specified

User

Posted 02 Apr 2016 at 17:04

It seems to be reported often here - the PSA rises during chemo as the cancer becomes more frantic in an attempt to fight back and then produces extra PSA as it dies off.

I hope the few days away has recharged your batteries x

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

User

Posted 02 Apr 2016 at 21:28

Hi Lesley

I'm sorry to hear that the PSA keeps rising, I can only imagine how scary that is. I hope it is his dying cancer cells putting up a last fight, that would be great. I do agree that keeping from dwelling on illness is a help, planning trips away and even a lunch with family keeps us on an even keel (most of the time). Sometimes it's the smaller annoyances that seem to tip us over but it's not an easy thing to do to keep being positive. I really admire you both for your zest for life, but I'm grateful that talk of skiing has stopped, that was a heck of a risk. A few glasses of wine in Barmouth sounds much more like it. I'm sure Bob will feel much better once the chemo is over, I think it must put you both into a high state of alert all the time. How is work going? It must be tough leaving him and caring less about work issues, I know it became too much for me and I'm much happier staying around caring for John and not having to make my brain ache with all that legal stuff I do for a living.

Is Bob still on Stillbestrill? John remains on his and it continues to keep his PSA down (as we all know that statement is only as good as the last test results). Will they offer enzalutimide after chemo? That is fairly well tolerated it seems.

I think you may need the forum comfort blanket, I know Rosy needed it and so did Julie, I don't think they'd mind sharing it with you.

Lots of love and hugs

Devonmaid xxx

User

Posted 02 Apr 2016 at 23:11

Hi Lesley,

Comfort blanket is on its way I have sent it first class post.

BFN

Julie x

NEVER LAUGH AT A LIVE DRAGON

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

hormone refactory - continued treatment next step

Join the online community now.