Treatment options running out

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Posted 26 Jul 2016 at 22:57

Well, Tony's one shot at Cabazitaxel looks like being his only one. It has been postponed repeatedly, and it is no longer feasible. The cancer is now well established in his bone marrow, and his platelet count is too low, and general state too weak, for chemo to be advisable, or likely to help. PSA is now up to 360, ALPS 2500. Hb is still low (97) despite a transfusion a week ago. Tony is still quite weak and breathless, and not eating so well now.

The onco has prescribed a hormone tablet, dutasteride, which he says may help a little, but we really think this is more of a placebo than a drug likely to be useful. Other than that, treatment is now just steroids and pain killers, and the three-monthly decapeptyl injections to keep the testosterone switched off.

On Friday we will have a visit from the palliative care nurse, who will discuss pain management and care options. We have thought and talked a bit more together, and with the onco, about the Big Issues. I feel oddly calm so far - we have been dreading the approach of this stage for so long, but somehow I feel less anxiety now that it is actually beginning.

I suppose the next time I start a thread will be in the End of Life section or the one on emotional issues. The active treatment phase is over, and we have to move on. I know I will not be alone, and others will be at a similar stage, to share experiences and support.

Marje

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Posted 28 Jul 2016 at 09:04

Great idea, David! We have favourite tapas place in Paignton called Olive, but we've been there quite recently and fancied a change.
Exmouth would be perfect for a short break, as it's an area we haven't explored much. We will just have to see how Tony is.The silly season is now upon us, wiith busy roads etc, and we usually just stay close to home in August - home is pretty wonderful in summer anyway. It's certainly an idea to keep in mind, but it's one day at a time for us now.
I've been to fetch the morning paper and am about to take his lordship his morning cup of green tea in bed.
Marje

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Posted 27 Jul 2016 at 21:13

Thanks for all the kind words. I don't know about being calm and serene - sometimes I am just in pieces. But I think I am learning to be stronger. Coming here and trying to put things into words, to people who understand, helps me to get my thoughts and feelings in order, and get things in proportion. We have both been a bit wobbly for about 24 hours, and then today we reminded ourselves that Tony could live for many months yet, and we can't keep rehearsing for the final parting; we need to get the most out of each day. Saturday is our 46th wedding anniversary, so we have booked a meal out, in a place where Tony can just eat from the starter menu if he's not very hungry. (It is also the 50th anniversary of England's World Cup victory over Germany, did you know?).

Perhaps I am partly relieved that chemo is no longer an option, as the onco said it would be riskier this time, and it does tend to take over your life. The whole tiresome business of being a patient, with endless blood tests, appointments, scans and prescriptions takes its toll, quite apart from the disease itself.

Glen, Tony also had the test for the olaparib trial, but wasn't eligible. Tony had a transfusion too, but it hasn't had a dramatic effect. Hope it helps your OH cope with the next chemo.

Marje

Edited by member 27 Jul 2016 at 22:31 | Reason: Not specified

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User

Posted 27 Jul 2016 at 08:47

Dear Marje

I was so sorry to ready your post.

Not much anyone can say really except that I'm thinking of you both and wishing you strength.

Best Wishes

Sandra

*********

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

User

Posted 27 Jul 2016 at 08:58

Sorry to read this Marje but thankful that you feel in calm waters rather than stormy seas, the human spirit is frequently much stronger than we give ourselves credit for. The only thing that puzzles me is the decision to continue with the HT - it seems the cancer is now surviving very well without testosterone so I would have wanted the onco to explain what benefits there are. As you move into this next phase, the more side effects you can put a stop to, the better. Perhaps the palliative care nurse could have that conversation with the onco at some point.

Don't underestimate the impact this will be having on you even when you feel fairly steady - the carer needs to be cared for x

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

User

Posted 27 Jul 2016 at 09:22

Thanks, Lyn. We asked about the HT and the onco said that wiithin a few months it was possible that without HT the testosterone would start to rise again, and that this was not a good thing. He implied that by next time round (in 3 months) it wouldn't be worth having another shot, as by this stage Tony is unlikely to live long enough for the testosterone to start to cause problems. The next injection is booked for today, so there won't be any further opportunity to question it.
Do you know anything about this hormone, dutasteride? We can't find anything online to suggest that it's likely to help. Tony also has the option of trying Abiraterone, but the onco seemed to think there was little chance of it helping now (post-Enzalutamide). I am concerned that the side effects might just make him feel worse. It's all about quality of life now.

User

Posted 27 Jul 2016 at 09:40

Sorry that the news is not better for you. Remember that Tony is still here today and try to enjoy each day without thinking too much about tomorrow. Tomorrow is just a promise for everyone, even the healthiest. Best wishes.

User

Posted 27 Jul 2016 at 14:26

Oh Marje,

There is a calmness and serenity in the way you compose your posts. I do so admire that. I am sure that calmness and serenity will help you both in the time ahead.

Have loads and loads of good days, and if you have time, tell us about them. Thank you.

David

User

Posted 27 Jul 2016 at 14:33

Research says that if enzo fails then abiraterone will also fail - that was the main reason NICE decided only to men to have one or the other. I am not sure it is always true but presumably your OH's stats make the onco think it won't help in your case.

You will find more about dutasteride on here by searching for Avodart instead. It is only prescribed in combination with other hormones I think, and works in a similar way to Casodex ie the other hormone blocks production of testosterone while the avodart disguises any lingering testosterone so the cancer can't find it.

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

User

Posted 27 Jul 2016 at 14:45

I am so sorry to read this having been in a very similar situation with my husband. You do sound so calm and accepting. Just try to enjoy every moment you can and create happy memories.

Take care

Rosy x

User

Posted 27 Jul 2016 at 18:25

So sorry to read this post, especially as my OH has recently started Cabazitaxel. He's booked for treatment 2 on Friday,, however, blood transfusion first on Thursday as Hb down to 7.2 and very breathless and tired. Also had ear infection and touch of shingles.

We've got an appointment to see if eligible for Olariparib but not pinning much on this as apparently on small percentage eligible.

It's not much fun is it, but I admire your positivity and try to emulate, being in a similar position.

Take care.

Glen

User

Posted 27 Jul 2016 at 21:13

Glen, Tony also had the test for the olaparib trial, but wasn't eligible. Tony had a transfusion too, but it hasn't had a dramatic effect. Hope it helps your OH cope with the next chemo.

Marje

Edited by member 27 Jul 2016 at 22:31 | Reason: Not specified

User

Posted 27 Jul 2016 at 22:22

Hi Marje

I have followed your posts for ages, I am so sorry to read wher you both now are. I can only hope that you both get the best of everything from now. Thinking of you and wishing you strength.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

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Posted 27 Jul 2016 at 22:40

It's always very difficult to know what to say when the day comes that nothing much else can be done. I too, love your accepting tone. I'm not in the same situation but I do know that writing on here what's going on helps me feel stronger. Marje, you have the right approach, do what you have to do then do what you want to do as long as Tony is well enough. My thoughts are with you both.

Massive hugs

With love

Devonmaid xxxx

User

Posted 27 Jul 2016 at 22:54

Hi marje

I too am really sorry to hear where you are in this journey. I hope you can manage to make some special memories and have some quality time over the coming few months.

I admire your courage and strength. Take care of yourself.

Sending you a big hug.

Lesley xx

User

Posted 28 Jul 2016 at 07:40

Originally Posted by: Online Community Member

Saturday is our 46th wedding anniversary, so we have booked a meal out, in a place where Tony can just eat from the starter menu if he's not very hungry.

Tapas! Perfect for small appetites. There's a superb Tapas restaurant in Exmouth called El Olivo that we go to regularly. The food is absolutely delicious and for the quality is as cheap as chips. All washed down with a cheeky San Miguel or two. Exmouth is a pretty good place for a short break and maybe you could consider it when Tony is having a couple of good days. Please let me know if you do.

User

Posted 28 Jul 2016 at 09:04

User

Posted 29 Jul 2016 at 02:02

Hi Marje,

Just wanted to say Hi on our difficult journey, life sometimes takes us to difficult places and it is how we handle the bad times that makes us stronger or so they say. Personally I think we just get through as best we can , thinking of you enjoy the summer and make the most every day .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

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