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Advanced prostat cancer part 2

User
Posted 14 October 2014 21:51:23(UTC)

Thanks George and Rob for your replies, even though I have read a lot about the HT holidays this didn't seem such a wise choice when Trevor's psa was rising so rapidly. I suppose I was hoping for something to be added (not sure what) just some miracle cure at the bottom of the tool box but then I guess that's what we all want.

I am realistic about our situation , we have known from the start that our options are limited and it is weird to say that after the shock and tears at the start of our journey, for the last maybe 6mths we have had a strange calm acceptance of our situation, but then like all with our dx just maybe, just maybe there is some new wonder drug just around the corner, just maybe.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 October 2014 11:30:15(UTC)

Hi Julie and Trevor,

It's good that you have a 'calm acceptance' of the situation, but as long as you keep that very positive and defiant attitude you've always had, then there's is always hope too.

Allister often talks about 'what's next in the toolbox', and over the years there have been many amazing stories on here.

What works for one man might fail for another, and it seems that only through trial and error that those with metastatic cancer eventually find the one that actually gives massive improvement.

 

I suppose it will remain the same till the day tailored tailored treatment arrives, treatment based on the DNA of our cancer cells.

That certainly looks to be the way forward.

 

In the meantime, keep on doing what you're doing, because you do it WELL!

 

 

Warmest wishes,

 

 

George

User
Posted 05 November 2014 22:26:56(UTC)

thank you all contributors - for making me cry - for making me smile;

I'm a mere 'newbie' and after reading the stories here, I feel humbled, my state is nothing compared to some of the stories here.  So, you have indirectly helped me cope, for which my heartfelt thanks.

I think I have seen the very best of human nature, and now I realise how important is the effect on carers and family around me; I shall adjust my attitudes to be very careful to include the feelings of those close to me.

Lastly, thank you, all of you, for educating me a little bit, probably the most important lesson I have ever learned in Life.

Bless the lot of you, for I have seen courage.

Kindest regards, b0b

User
Posted 06 November 2014 22:21:30(UTC)

Well it's nearly that time again we are off to see the Wizard tomorrow, my how time flies. Trevor has been down with his usual breathing difficulties for the last few days and is back on steroids this morning. I have to smile as our GP now asks me how many days I think he needs and would I like them reduced gradually or a abrupt stop. Who put me in charge.

 

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 07 November 2014 06:57:02(UTC)

Hope all goes well today Julie

Take care
Bri x

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User
Posted 07 November 2014 07:42:34(UTC)

Thank's Bri.

BFN

Julie x

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 November 2014 07:58:12(UTC)

Good Luck today Julie oh and Trevor

Si xx

Don't deny the diagnosis; try to defy the verdict
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User
Posted 07 November 2014 08:15:06(UTC)
Thinking of you and Trevor my SS
I think the change in weather has affected a lot of people with respiratory issues, make you sure you stay snuggly warm xxx
Mo
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User
Posted 07 November 2014 08:49:17(UTC)

Fingers crossed for you.

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User
Posted 07 November 2014 14:05:55(UTC)

Same here, hope all goes well !

 

Fiona x

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User
Posted 07 November 2014 16:54:04(UTC)
Hi Julie
wishing you both good luck for today.I can relate to Tremors breathing problems not nice.
So no giving him a wee poke.
Love and best Wishes
Carol x
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User
Posted 07 November 2014 18:56:16(UTC)
Hi Julie
Hoping everything went well. We have our visit to oncology on Monday - can't say I'm looking forward to it.

The change in weather doesn't help those with breathing difficulties, hoping Trevor's asthma is under control now.

Big love
Allison xx
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User
Posted 07 November 2014 19:38:47(UTC)

Firstly thank you everyone for your messages it is sooooooooooo appreciated.

So here is the stats scores on the doors are

PSA - 180.4 up from 66 last time

ALP- 79

Testosterone - 0.01

So safe to say we are now officially HT resistant, so out of calm waters and back in shark territory. Although I do remember Lyn saying that to be properly HT resistant the Testosterone levels usually rise as well as PSA. ?

Plan of action is to stop Bicalutamide immediately , apparently 1 in 5 men will respond although temporarily to this. (I don't have a lot of faith in this idea). I don't no why I am saying this it just seems to me well kind of Bonkers but hey ho what do I know. Even the Wiz couldn't explain how or why it sometimes works.  So if anyone has any answers I would love to hear them.

MRI and CT scans to be done in the next 4 weeks with next appointment for 8 weeks time and if there has been no change or another rise then she will risk Abiraterone.  If any of the guys already taking this could give us hints and tips on side affects etc this would really help. She did explain the increased risk of Cardiac arrest and fluid retention being her main worries (pretty much mine as well) but seeing as we are between a rock and a hard place we will go for it, I think the term Suck It And See comes to mind.

So we are a bit further up this rocky road my fear has always been would Trevor's psa rise as fast as it fell, I think we are about to find out.

Once again thanks to everyone for being there.

Alison I will be thinking of you and John on Mon.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 November 2014 21:50:12(UTC)
Hi Julie
sorry to read your news.I have written 6 replys and deleted them nothing I can say would help with how you must be feeling today.
As for blumicamide I agree with you.
Will be thinking of you both.
Best Wishes
Carol x
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User
Posted 07 November 2014 22:12:53(UTC)
Julie my friend
not the news you wanted the rise In PSA does seem to confirm that Trevor is now technically either castrate resiatant or on the way to it. I could try and explain why stopping Biculatmide is not as crazy as it sounds but I am sure Lyn or Rob or one of the others who has much more technical knowledge will do a much better job.
I have been thinking about you all day today. I will ring you tomorrow night or Sunday, just let you have a while to draw breath and get to grips with the next battle plan.
xxxx
Mo
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User
Posted 07 November 2014 23:06:11(UTC)

Mo and Carol, Thank you for your replies. Carol how are you, holding up I hope . X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 November 2014 02:33:34(UTC)

Julie, not what I was hoping to see and definitely not what you wanted to hear. I think you have recalled wrongly though; either it wasn't me that said it or you have remembered upside down - to be hormone independent the PSA needs to be rising despite T being below castrate level. Simply, the cancer has been starved, is still being starved and so has found an alternative food source. Or .... There are no crisps in the house, your boys want crisps, they crave crisps, there are still no crisps but they are starving so they learn to like apples instead.

The explanation of antiandrogen withdrawal response (AAWR) is I think only a theory but it's believed that in men who have casodex for a long time, the cancer can learn to use the casodex as a food source so it ends up doing the opposite to what was intended. So the boys crave crisps, you give them apples instead but if they eat too many apples, eventually they might learn how to make the apples into crisps. Take the apples away and the boys have nothing to eat.

How has Trevor responded to the news?

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


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User
Posted 08 November 2014 09:57:25(UTC)

To the Lady in the red hat who never sleeps thank you for that brilliant analogy (how did you get so smart) .  Trevor showed no outward signs yesterday although I could tell he was devastated. On leaving the hospital  his first thought was his tummy and where we were going to have lunch he amazes me that he can eat and think of food at these times. I am sure if he had been fighting in the trenches in world war 1 he would have had a flag to raise to say stop Guys it's lunchtime.

So in M&S over his Penang Curry he paused mid mouthful , sighed and said" So it's up again " my reply was" Do you want half of this Turkey sandwich".

Getting back to food analogies Trevor is like an onion, brown and crusty on the outside with so many layers it is difficult sometimes to peel them back and get to the middle. You know what it is like when you have been with some one for so many years, you don't always need words to know how they are feeling.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 08 November 2014 10:34:03(UTC)
So sorry to hear your news and thank you for replying to my post when you have obviously had your own bad news yesterday. I will be
thinking of you both. X
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User
Posted 08 November 2014 11:45:52(UTC)

Ah my lovely friend, I'm not clever at all. But I have to train a lot of Head Teachers and learned many years ago that if you want them to understand something they don't want to hear, you have to use words of less than two syllables! I also use a LOT of puppets!

If you look back at previous members' stories, some have had a really good AAWR so perhaps use those stories to boost T's confidence. This time last year we were all worried about your boys and Christmas ..... I think this will be a good Christmas for you all.

I am worried about you though, particularly your eyesight or the resolution on your screen. The hat is pink :-0

Love Lyn x

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


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User
Posted 08 November 2014 11:47:06(UTC)

PS if he doesn't want half your turkey sandwich, can I have it?

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


User
Posted 08 November 2014 18:41:36(UTC)
Julie

I posted on here this morning but the website was wobbly and my post obviously got the chop! A few posts have come up since then.
I love that Trevor is still worried about his tummy, good for him.
I also commented on Lyn's great way of explaining the crisps and apples, one of these days we should get her to do the birds and the bees so we can use that with kids and grandchildren!!
will ring sunday evening
xx
Mo
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User
Posted 08 November 2014 19:17:21(UTC)

Thanks Mo that has really made me chuckle, I can just imagine Lyn doing that and she would probably make it sound very plausible .

Lyn I was sure your Hat was Red and yes of course you can have my Turkey sandwich, we are all out of apples and crisps though.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 November 2014 19:22:53(UTC)

Oh dear, note to self do not go out to a party and wake up with a hang over and try and make sense of this threat, but here we go 

Sorry to hear that Trevor is now allergic to Apples i  do not agree with Lyn that Trevor should now substitute them for crisps if it was me i would try bananas.

Lyn looks nothing like Chris De Burgh, not really sure where you get that from. but she should use spell checker what is AAWR it makes no sense to me at all.

Mo why are you on about wobbly you said you was going to the gym if that is the case then there should be no wobbly

Julie only offering Trevor Half a sandwich when he has been out all day is bad i will be ring child line.

I thought Trevor was having results, what was they!!! typical women yacking on about onions, apples, crisps just don't get it

Si xx       

Don't deny the diagnosis; try to defy the verdict
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User
Posted 08 November 2014 19:28:36(UTC)

Ah didn't go back far enough

Sorry to hear the PSA has gone up again.

Now Abbi i would give it a go, i have read that once the body has been loaded with the drug say 2 weeks worth of 4 tablets a day the dose can be reduced to one tablet and it works just as well. that came from the guy that invented it.

More than happy to try it, anything for a friend

Honestly though Julie, not good news but i would defiantly give it a go.

We all send our Love

Si

 

Don't deny the diagnosis; try to defy the verdict
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User
Posted 08 November 2014 19:30:58(UTC)

Hi Julie,

 

Just a thought. Ask your Oncologist if Enzalutamide would be more useful than Abiraterone bearing in mind that Trevor's T. level is already extremely low now. Enzalutamide works within  the cell nucleus ( unlike Casodex ) and just might be better in his case. Side effects are considered light & no steroid is usually used with it unlike Abiraterone. You can only have one under the current NICE guidelines so worth asking now ? If the T. level was higher then it might not matter so much. Just my opinion.

User
Posted 08 November 2014 19:45:29(UTC)

On Julie
That's quite a rise, but people who start with big numbers tend to get big numbers, if you know what I mean. People like John who start with small numbers rise in small chunks but consequences can be the same. PSA is a funny old thing. John didn't do well at all on Casodex and we are still thinking chemo for us rather than abby tab, though the medics did say abby tab most likely for us. I'd rather do chemo and save the abby tab/enzalutimide debate for later. Im pretty sure Trevor can't have chemo though so I guess that decision is imminent for you. I hope Trevor gets a AAWR - anything to get a longer spell before the next treatment.

As always on your threads, have been laughing out loud, despite the news. I thought Lyn's hat was blue, my eye surgery went well I thought, but hey ho.

Will let you know what Monday brings for us, but in the meantime, what was that about a Sandwich?

Lots of love
Allison xxxx

User
Posted 08 November 2014 19:56:41(UTC)

Just found this Julie might be of interest

Si xx

 

I don’t understand why if I have hormone resistant advanced prostate cancer why the new drugs, Zytiga and Xtandi work. These drugs are still hormone therapies, is my prostate cancer hormone resistant? I recently received an email asking me this question and I thought it might be a question many people have, so I am going to answer this on the blog.

First, I want to be clear, yes Zytiga and Xtandi are both hormonal therapies that do work for many men when their cancer has been classified as hormone resistant.

The failure of Lupron etc. and Casodex does not mean that our cancer no longer is dependent upon testosterone. What it really means is that our cancer now has adapted itself and become more sensitive to lower levels of testosterone and is able to find alternative sources of testosterone. Simply put, the Lupron and Casodex are no longer powerful enough to do the job.

This change is the result of three different mechanisms. We have now found out that prostate cancer cells themselves are capable of making their own testosterone, making them independent of outside sources; the cancer cells often are able to modify their androgen receptor so that Casodex encourages the cancer growth by treating the drug as if it were testosterone. (This is why in many men stopping Casodex will initiate a positive response) and the androgen receptor becomes more sensitive so that it needs much lower levels of testosterone to continue growing.

To be accurate it is quite uncommon for prostate cancer to become androgen independent. This understanding of the progression of prostate has led us to the new forms of hormone therapy using Zytiga and Xtandi

Zytiga (given along with prednisone) was the first FDA-approved drug to respond to this understanding. Zytiga ‘s mechanism of operation is simple, it is much more efficient at blocking testosterone production then Lupron. Its most important difference is that it blocks testosterone production throughout the body; including the adrenal glands and the cancer cell itself. Zytiga is more efficient at lowering the levels of testosterone production in the entire body (not just from the testis).

The other new hormone therapy drug is known as Xtandi and it has a different mechanism of action from Zytiga and the other hormone therapy drugs. Xtandi has been called a “Super Casodex” because like Casodex, it binds to the androgen receptor, however Xtandi is five fold better at competing with testosterone for the androgen receptor than is Casodex. Xtandi uses different pathways that are used by Lupron and Casodex and is able to work even while Lupron and Casodex have failed.

The bottom line is that it is a misnomer to call prostate cancer that has begun to progress in the face of Lupron (etc.) and Casodex hormone resistant. In fact prostate cancer at this stage is still dependent on the androgens, but the cancer has actually developed additional pathways around these first stage treatments so that it can continue to progress. Zytiga and Xtandi respond to these new pathways, but they too only respond for a limited time as this cancer is able to develop even more new pathways.

Don't deny the diagnosis; try to defy the verdict
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User
Posted 08 November 2014 20:46:58(UTC)

In other words then, Zytiga is spread on the garden to kill the apple trees and xtandi is like putting a blindfold on so you can't find the crips?

Allison, you have seen my blue hat. Phew!

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


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User
Posted 08 November 2014 20:56:48(UTC)

As an aside, and thinking about Si's point that it is rare for a cancer to become truly 'androgen independent', many people (and some leaflets etc) use the phrase 'hormone resistant' which doesn't mean anything. To make any sense, we would need to say 'hormone treatment resistant'. I was careful to use 'hormone independent' in my previous post (which means the cancer cells can make their own food) and I think we could really help other members that come along later by making this distinction whenever we can.

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


User
Posted 08 November 2014 21:56:44(UTC)

Si is that a medical dictionary in your pocket or are you just pleased to see me.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 08 November 2014 22:32:26(UTC)

Really helpful posting, Si. I wonder whether casodex should now be by passed if it has contradictory outcomes? Or does it do a job for a good while and gives time which we know is important. I will be on to this soon so just thinking aloud!

User
Posted 08 November 2014 23:50:45(UTC)

I don't know about the Apples and Crisps, straws comes to my mind, clutching at! Lyn, you certainly can give some illuminatory responses, Simon, where did you find that post?

Julie, not the required numbers?, ask for a redial!, Seriously, it is good for Trevor to be thinking about food, but as Lyn also says, "she is worried about you" well, so are we, your sense of humour is only a mask which you use to good effect, SO TAKE CARE of yourself, sweet girl.

God bless,
Chris.

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User
Posted 09 November 2014 09:47:54(UTC)

Thinking of you both, not the results you wanted but lovely that everyone on the forum rallies round with love, advice and support, often what gets us through ! Now off for a dog walk having been gardening at 8.am ! Takes my mind off things though at this rate I'll be needing some of that sandwich soon to put on weight,

 

Lots of love, Fiona. x

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User
Posted 09 November 2014 23:21:18(UTC)

To all Thank you for being there.

Si joking aside that was Very interesting I will confess I have to read it a few more times for it to sink in . Rob really interesting to read your thoughts on Enza versus Abi I must confess I have had similar thoughts myself.

BFN

Julie X 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 November 2014 09:45:31(UTC)
Thanks SI
Useful information for us today as we discuss these matters with the oncologist. I have always had the feeling that Enzalutimide is not right for John because Casodex didn't work and I had always understood these were related drugs.

My brain hurts.....

Love Allison
User
Posted 29 November 2014 22:53:33(UTC)

Got to thinking about this Cancer and the journey that we are all on. This is just a little poem about the road we are all travelling. Hope you enjoy it.

The station is so busy far to hectic for me, I can't remember what train they said , I'm not sure where we should be. I look at him for reassurance but he looks more confused than me, sit down and take the weight of I'll fetch us a cup of tea.

I spy the ticket office but there's crowds of people there should I push my way through or just politely que.

The family in front of me have buckets and spades day trippers I thought, they brought a return ticket to RP they say it's nice there this time of year. I think they used there rail card and this reminded me I had accidently dropped mine when I went to get the tea.

Finally it's me, 2 tickets to Cancer central please, "sorry love this window is return tickets only you need window 3. I looked around for window 3, this station this station is so busy it's beginning to worry me.

I saw a guard he might help. " Excuse me do you know where I can find window 3 , you don't want window 3 love that's the non stopper it terminates at the end of the line. OH I thought bu@@er me, so where should we be. Try window 2 he said that's the scenic route it stops at all the stations.

Come on I said to him lets try window 2 there's a buffet car included and you get a free cup of tea.

Are you sure this is our train he say's , are you sure you heard him right. The speaker booms out the train leaving at platform 2 is for Cancer Central and is calling at all stations so of we set into the night. Yes I thought I heard him alright.

The lady with the buffet car came rattling down the aisle anyone with a HT season ticket gets a free curry, that made him smile.

We dozed awhile grateful for a nap, The train started slowing as we approached Chemo many fellow travellers stood up we gave each other a knowing nod as the speaker said Mind the Gap.

The train is speeding along know, clickety clack , clickety clack , should we stop at Abiraterone or go further up the track.

We chatted to the man opposite he was going to Enzalutamide, he said it's brilliant there's a water park with a slip and go slide.

This journey has been exhausting and I think we both agree, if we have to come this away again it'll be the Bus for him and me.

BFN

Julie X

 

 

 

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 30 November 2014 00:12:47(UTC)

Brilliant, Julie.

User
Posted 30 November 2014 07:46:26(UTC)
Thank you, Julie.
I found it so moving it made me cry.
Thank you for posting this.
Love to both,
Steve x
User
Posted 30 November 2014 12:40:55(UTC)
Being on the same journey, this made me smile and sniffle at the same time Julie

Big love birthday girl xxx
User
Posted 30 November 2014 15:19:27(UTC)

Nice one Julie x

User
Posted 30 November 2014 17:59:41(UTC)
fabulous SS made me laugh and cry as usual xx
User
Posted 30 November 2014 18:33:13(UTC)

Julie,
That was beautiful, thanks for sharing.

Kevin

User
Posted 30 November 2014 22:35:25(UTC)

That was a wonderful post Julie.
Our love to you both.

Chris

User
Posted 01 December 2014 18:46:45(UTC)
Love it Julie just trying to work out my window 😘
Don't deny the diagnosis; try to defy the verdict
User
Posted 01 December 2014 22:49:59(UTC)
Hello Julie
lovely post sad but with your usual humour made me smile.
Carol x
User
Posted 03 December 2014 19:40:04(UTC)

It's not often I am lost for words Julie but right now, speechless. You are a very special lady x

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


User
Posted 19 December 2014 12:56:49(UTC)

zytiga and xtandi block androgen receptors , so they work in a different way , thats why you still need lupron injections to reduce testosterone along side them

User
Posted 28 December 2014 22:00:42(UTC)

Well after a lovely Xmas day things have started to go down hill again, Trevor was on top form and even cooked a traditional Jamaican breakfast for the boys (Akee and salt fish) . Boxing day he started to feel unwell but nothing specific then yesterday he spent the whole day in bed and didn't eat (for Trevor this means he is feeling very unwell) . I have had the Flu bug and thought maybe he was coming down with it.

He was very tired this morning and couldn't stay awake, very wobbly on his feet and nearly fainted his breathing was getting more and more laboured so I called an ambulance, long and short of it is the paramedics thought he may have scepcis we are still waiting for all of the test results. He has been admitted to a ward with a temp of 41 fluid on his lungs and very low BP. So just another day in our new normal. I know you said no ambulances Alison and we nearly made it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 December 2014 22:40:23(UTC)

Hi Julie,

So sorry Trevor is not feeling well especially after such a good Christmas Day.  Not what you both need at this time of the year. 

I hope they manage to sort things out for him at the hospital.  I felt very dizzy and had extremely low blood pressure when I was admitted into hospital in November so what you said reminded me of my experience.

Let's hope he's back home with you in time for New Years Eve.

Send him my Best Wishes.

Steve x

 
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