2 years on abbis and dexamethosone. PSA up and down. What advice

User

Posted 08 Feb 2017 at 15:31

My husband had second opinion at the Marsden in July 2014 He was diagnosed with metastasised prostate cancer in July 2013. Marsden advised he should stop the prednisone he was taking with the Abbis and move to dexomethasone, which he did.

Since then he has taken these religiously. His PSA has never gone below 55. Last test 98 last week. All onco says is how are you feeling. Pete says fine, but doesn't tell him about constant fatigue and lethargy. Spoke to specialist nurses today and registrar at the Marsden. They both think our onco should've be more proactive. CT and new bone scan, plus possibly docetaxel. Pete also gained loads of weight. This slows him down a lot as well, so he gets little exercise. Any thoughts advice would be really helpful, as I'm feeling quite useless and down.

User

Posted 08 Feb 2017 at 17:06

Hi Jenny

Had replied to your direct message before seeing this post...I do feel for you and know exactly what you mean. Several years on this particular roller-coaster would get anyone down. Please do ask for support for yourself if you haven't already. I've had a couple of counseling sessions and two reflexology sessions via the hospice, and am booked in for a whole load more. They have been massively helpful - even if only to give me a nice calm space to wail in! Each time I've come out feeling stronger and more positive even though I've sometimes been inclined to think I didn't need the extra support.

And please do take the advice given by the specialist nurse and get some clear answers to some direct questions.

Take care.

Eleanor

User

Posted 08 Feb 2017 at 17:50

Jenny, It is very important to get that surplus weight off. Prednisolone stimulates the appetite, so this may have helped your OH gain that weight, which naturally will have led to lethargy. I have been through this myself and know the willpower it takes to get the weight off, by eating and drinking(?) less and getting in regular walks. I don't advocate strenuous exercise. Three or four miles walking a day will do it. The fitter we are, the more readily we can fight this cancer.

By the way when we are on Abiraterone, the oncologists are guided not just by the PSA level, but also by the overall blood measures and general fitness. So your guy may have had good reason for the advice he gave, but I tend to side with the nurses on the scans idea, perhaps before changing the treatment plan?

AC in Leics

User

Posted 08 Feb 2017 at 18:44

Originally Posted by: Online Community Member

Do you have to have had chemo(docetaxel) before starting enzo.?
I don't feel the abbis and dexo are doing much good for my O/H, but the onco doesn't seem bothered even though his PSA has risen from late 50s to 98. My husband's PSA, that is, not the onco's!

Jenny,

I'm sorry to tell you that if you have abbi you can't have enzo and vice versa. This is a NICE decision which they made since the cost of these drugs is very high and the fact that if one fails then it is very unlikely that the other will then work. My Onco told me that there was a 5% chance of abbi working after my enzo failed.

David

Think David posted this in my thread by mistake so I'm reposting here (I hope - not great on technology!) E.

User

Posted 08 Feb 2017 at 23:33

There are some exceptions Jenny and your OH may be lucky and able to get it but generally, the trials have shown that once one fails the other is unlikely to work.

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

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User

Posted 08 Feb 2017 at 17:06

Hi Jenny

And please do take the advice given by the specialist nurse and get some clear answers to some direct questions.

Take care.

Eleanor

User

Posted 08 Feb 2017 at 17:50

AC in Leics

User

Posted 08 Feb 2017 at 18:06

Thanks, A/C!

He actually put less weight on when he was on the prednisolone, than when he moved over to the dexamethosone. That really has knocked him for six. His legs feel like lead, he says, and he is breathless from the weight. I keep wondering if they could put him back on the prednisolone, if that would help. But I'm going to push for the new CT and bone scans. Won't do any harm, will it?

Jenny

User

Posted 08 Feb 2017 at 18:44

Originally Posted by: Online Community Member

Jenny,

David

Think David posted this in my thread by mistake so I'm reposting here (I hope - not great on technology!) E.

User

Posted 08 Feb 2017 at 22:18

Thanks Eleanor and David. I thought if you were on the Stampede trial you could be prescribed both. Pete hasn't had chemo yet.

User

Posted 08 Feb 2017 at 23:33

There are some exceptions Jenny and your OH may be lucky and able to get it but generally, the trials have shown that once one fails the other is unlikely to work.

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

User

Posted 09 Feb 2017 at 12:54

Lyn,thanks for your reply. I guess I'm feeling down at present, because O/H is, too. He is upset about his fatigue and weight. I try to encourage him to have regular exercise as much as possible, but he is very reluctant. The reason I was drawn to Enzo is because you don't take steroids with it, do you, and the dexamethosone seems to make no difference to him at all. It is only a small dose, admittedly, but its that has put the weight on, and made him so breathless. Do you still feel it wouldn't be a good option? He hasn't had docetaxel yet, and is dreading that more than anything. Do you have any thoughts from your big bag of experiences?

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