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PSA on the rise again

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User
Posted 10 Dec 2016 at 00:10

In July my PSA was 1.7. In October, this had risen to 11.2. Today it was 32 (well in fact that was based on a blood sample from two weeks ago, so it is probably higher than that by now).

I did have a CT scan in November and that showed that the tumours were either stable or actually shrinking. But my onco has decided that it is time to move on to the next stage of treatment.

He offered me 3 options:

1. Chemotherapy

2. Aberaterone

3.Partaking in the SOTIO study

 

I have chosen the Aberaterone and I start treatment with it next Thursday (15th Dec). He explained that this will potentially extend my life by 4 months, but he didn't explain what period I might have without the Aberaterone that might be extended by this amount!

I am unsure what to expect in terms of side effects with Aberaterone. As some of you may know, I have suffered quite badly from the side effects of Degarelix, so I am a bit concerned about compounding those with the Aberatone. Maybe I am just being a wimp!

 

I would be grateful for any pointers

 

Peter

 

 

User
Posted 10 Dec 2016 at 08:42

Peter,

Aberaterone and Enzalutamide work in different ways but have similar outcomes I believe in how long they are effective for. Enzalutamide protected me for 22 months and apart from some constipation which was easily resolved and a raised BP, the side effects were a walk in the park and made no impact upon my quality of life. I see no reason Aberaterone won't be exactly the same for you as regards side effects.

David

User
Posted 10 Dec 2016 at 08:44

Can't really offer any advice Peter but want to wish you well.

Bri

User
Posted 10 Dec 2016 at 17:07

Look for members Spurspark and Alathays, both of whom wrote on here about their abbi experience. Spurspark took it as part of the original trial so documented it on here in great detail.

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

User
Posted 10 Dec 2016 at 20:21

I've been on Abiraterone for nearly three years. No side effects at all. We are not all the same. Some don't take to it. But good for a few months? Very unlikely, I'd say. Some people have been on it for years at my hospital.

AC

User
Posted 11 Dec 2016 at 09:24
Hi my OH is taking abi and Enzo on trial so double whammy of drugs ,but he gets a lot more aches in muscles and more fatigue ,hope this helps

Debby

User
Posted 11 Dec 2016 at 15:29

Hi Debby,

Thanks for that. I am guessing that he is on the Stampede Trial? I am sort of part of the Stampede Trial but I was randomised to the radiotherapy arm and I felt that for other health reasons, I shouldn't risk having RT without it being absolutely necessary. My Onco agreed and said he would keep me in the trial on a control basis, which I was happy to do.

I was offered Enzalutamide, but I did have a short time of taking Bicalutamide a few months back and I found I just couldn't function at all with that. My Onco tells me that Enza is the "big brother" of Bicalutamide and so the symptoms would be similar. For that reason, he said Abbi would be better for me.

Overall, he has told me that I have been unlucky with my reactions to degarelix and and Bicalutamide and he hopes I will have less trouble with Abbi. I do have to continue with the degarelix, but it doesn't seem to have any effect now, either in ts control of the disease or in the side effects. So my fingers are crossed for the future.

 

Best wishes

 

Peter

User
Posted 11 Dec 2016 at 17:08

Originally Posted by: Online Community Member
I was offered Enzalutamide, but I did have a short time of taking Bicalutamide a few months back and I found I just couldn't function at all with that. My Onco tells me that Enza is the "big brother" of Bicalutamide and so the symptoms would be similar. For that reason, he said Abbi would be better for me.

This sounds like really good advice to me Peter. I took Bicalutamide for a few months. It was as effective as a chocolate teapot BUT I had no side effects from it. My side effects from Enzalutamide were minimal as I reported above. It sounds to me that your Onco is right on the button. It helps to have a good Onco on your team. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 10 Feb 2017 at 21:19

Hi Jenny,

I have been on Prednisolone since starting Abbi in mid December. I wasn't given any choice in the type of steroid I was prescribed, but I have had no problems with it so far. I went to the clinic for monitoring yesterday and my PSA has fallen further, to 3.3, so I am reasonably happy with that.

I was given a choice of starting Abi, or Docetaxol by my onco. He explained the advantages of each but then said the choice is mine. I made my choice, but I am not sure if I will have a further opportunity to go onto chemo at some point in the future. In the meantime, I am happy with my choice.

One side effect which is difficult to cope with is the unbelievable level of tiredness that I feel. I mentioned this to the clinic nurse yesterday and she did understand. She said it is like feeling permanently jet lagged!

The bone and CT scans will give a true picture of how the tumours are growing or shrinking. I think they should be done every 6 months or so as a matter of course.

Best wishes and good luck

Peter

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User
Posted 10 Dec 2016 at 08:42

Peter,

Aberaterone and Enzalutamide work in different ways but have similar outcomes I believe in how long they are effective for. Enzalutamide protected me for 22 months and apart from some constipation which was easily resolved and a raised BP, the side effects were a walk in the park and made no impact upon my quality of life. I see no reason Aberaterone won't be exactly the same for you as regards side effects.

David

User
Posted 10 Dec 2016 at 08:44

Can't really offer any advice Peter but want to wish you well.

Bri

User
Posted 10 Dec 2016 at 17:07

Look for members Spurspark and Alathays, both of whom wrote on here about their abbi experience. Spurspark took it as part of the original trial so documented it on here in great detail.

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

User
Posted 10 Dec 2016 at 20:21

I've been on Abiraterone for nearly three years. No side effects at all. We are not all the same. Some don't take to it. But good for a few months? Very unlikely, I'd say. Some people have been on it for years at my hospital.

AC

User
Posted 10 Dec 2016 at 22:56

Thanks to each of you. That is all very reassuring. Thanks so much

 

Peter

User
Posted 11 Dec 2016 at 09:24
Hi my OH is taking abi and Enzo on trial so double whammy of drugs ,but he gets a lot more aches in muscles and more fatigue ,hope this helps

Debby

User
Posted 11 Dec 2016 at 15:29

Hi Debby,

Thanks for that. I am guessing that he is on the Stampede Trial? I am sort of part of the Stampede Trial but I was randomised to the radiotherapy arm and I felt that for other health reasons, I shouldn't risk having RT without it being absolutely necessary. My Onco agreed and said he would keep me in the trial on a control basis, which I was happy to do.

I was offered Enzalutamide, but I did have a short time of taking Bicalutamide a few months back and I found I just couldn't function at all with that. My Onco tells me that Enza is the "big brother" of Bicalutamide and so the symptoms would be similar. For that reason, he said Abbi would be better for me.

Overall, he has told me that I have been unlucky with my reactions to degarelix and and Bicalutamide and he hopes I will have less trouble with Abbi. I do have to continue with the degarelix, but it doesn't seem to have any effect now, either in ts control of the disease or in the side effects. So my fingers are crossed for the future.

 

Best wishes

 

Peter

User
Posted 11 Dec 2016 at 17:08

Originally Posted by: Online Community Member
I was offered Enzalutamide, but I did have a short time of taking Bicalutamide a few months back and I found I just couldn't function at all with that. My Onco tells me that Enza is the "big brother" of Bicalutamide and so the symptoms would be similar. For that reason, he said Abbi would be better for me.

This sounds like really good advice to me Peter. I took Bicalutamide for a few months. It was as effective as a chocolate teapot BUT I had no side effects from it. My side effects from Enzalutamide were minimal as I reported above. It sounds to me that your Onco is right on the button. It helps to have a good Onco on your team. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 11 Dec 2016 at 18:46

Thanks David,

Yes it is nice to have a good Onco. I must admit, I have given him a hard time, constantly arguing with him and questioning him about my treatment. But he has always shown me the utmost respect and answered my many questions perfectly.

I briefly changed from Degarelix to Bicalutamide in July, mainly because I was suffering from the side effects of Degarelix. But as I said, I found I just couldn't get out of bed in the morning, never mind carry out any activity, so after 3 weeks, I changed back to Degarelix. I am now wondering if it was that break which caused the Degarelix to stop working.

Anyway, I have high hopes for the Abbi so roll on Thursday so I can get started on it!

Thanks for your advice, which I greatly appreciate.

 

Peter

User
Posted 03 Feb 2017 at 20:13
How have you got in with abbi? Reading with interest as my dad has PCa and has been offered this due to PSA rise. He's deciding over the weekend......
User
Posted 03 Feb 2017 at 20:51

Hi Beebee,

 

I have been using Abbi for 7 weeks now and it has so far worked very well. My PSA had risen from a low of 1.7 up to 51 on the day I started Abbi. At my first monitoring appointment after 4weeks, my PSA was down to 4.7. So yes, it certainly did its job! I am due my next monitoring appointment on Thursday next week, so I will know if it has continued to work as well as it started.

 

I have not had any additional side effects so far, but I would say that the two main side effects I was getting with Degarelix have got more severe. I do feel really tired all of the time and the hot flushes are more intensive (and painful!). But I am coping with the effects reasonably well.

 

I hope this helps, but if you would like to know any specific information, just let me know. Overall, based on my experience of Abbi, I would say go for it!

Good luck

 

Peter

User
Posted 03 Feb 2017 at 21:01
Brilliant - thanks for your feedback. Very reassuring and glad you're doing well x
User
Posted 09 Feb 2017 at 13:25
Peter, just read your post about your experiences with Abbis. My husband been taking it with steroid since April 2015. He had second opinion at the Marsden in July 2015. They swapped his prednisone for dexamethosone. That seems to have done little for him except put on loads of weight, and make him very tired! Were you put on steroids with the Abbis? If so, how was it? His PSA hgas never been low, but goes up and down bvetwern 50+ and 90+. No real advice from onco. Marsden are suggesting new bone and CT scans, and then possibility of docetaxel. Any thoughts?

Thanks, Jenny

User
Posted 10 Feb 2017 at 21:19

Hi Jenny,

I have been on Prednisolone since starting Abbi in mid December. I wasn't given any choice in the type of steroid I was prescribed, but I have had no problems with it so far. I went to the clinic for monitoring yesterday and my PSA has fallen further, to 3.3, so I am reasonably happy with that.

I was given a choice of starting Abi, or Docetaxol by my onco. He explained the advantages of each but then said the choice is mine. I made my choice, but I am not sure if I will have a further opportunity to go onto chemo at some point in the future. In the meantime, I am happy with my choice.

One side effect which is difficult to cope with is the unbelievable level of tiredness that I feel. I mentioned this to the clinic nurse yesterday and she did understand. She said it is like feeling permanently jet lagged!

The bone and CT scans will give a true picture of how the tumours are growing or shrinking. I think they should be done every 6 months or so as a matter of course.

Best wishes and good luck

Peter

 
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