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Recovery after Bicalutamide

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User
Posted 20 Apr 2018 at 09:14

Hi all


I'm most very looking forward to the end of my Bicalutamide treatment (150mg daily) for many reasons.  However, I'm struggling to find out the vital info - how long until the side effects wear off?  I'm told that with other HT treatments that the rule of thumb is that it takes as long to wear off as the time you are on it.  Is Bicalutamide the same?  As you may have guessed, I'm hoping for a quicker recovery time!


Cheers


Graham

User
Posted 20 Apr 2018 at 14:01

hi Graham, I'm a little ahead of you, so maybe I can encourage you a bit, although everyone is different.


Identifying when I stopped taking bicalutamide needs a bit of assumption, because the last treatment was a 3 month injection, and the 3 months ran out about 6 weeks ago, of course the drug didn't disappear overnight.


The first 3 of these 6  is very difficult to separate out because it was masked by the side effects of the radiotherapy, the fatigue was far far worse!!


But after the 6 weeks since the bicalutamide ran out , in theory, the fatigue and hot sweats are already a rare visitor, perhaps once a week. I can now safely say that the other side effects, muscle weakness and energy (somewhat different to fatigue) are improving rapidly. Afternoon naps have been replaced by dog walking.


One final side effect which hasn't yet improved significantly is the stiffness and locking of my finger joints, although I've been able to continue playing my ukulele. I'm sure that in a couple or 3 months, that will resolve.


So to pull it all together, my radiotherapy and bicalutamide finished about 4 to 6 weeks ago, and I feel pretty good..


I've joined Slimming World to try to get rid of my embarrassing gut, I'll report on this is due course (if successful)


Good luck, a positive attitude is your greatest ally!!!

User
Posted 21 Apr 2018 at 09:04
You may be right, Lyn. I was taking the tablets, which were Bicalutamide, before going on to the injections. I had just assumed it was the same stuff.I have just double checked and noted the injections were Prostap, whatever that is. Im sure I've answered and encouraged someone, maybe not Graham at this time😉😀.
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User
Posted 20 Apr 2018 at 14:01

hi Graham, I'm a little ahead of you, so maybe I can encourage you a bit, although everyone is different.


Identifying when I stopped taking bicalutamide needs a bit of assumption, because the last treatment was a 3 month injection, and the 3 months ran out about 6 weeks ago, of course the drug didn't disappear overnight.


The first 3 of these 6  is very difficult to separate out because it was masked by the side effects of the radiotherapy, the fatigue was far far worse!!


But after the 6 weeks since the bicalutamide ran out , in theory, the fatigue and hot sweats are already a rare visitor, perhaps once a week. I can now safely say that the other side effects, muscle weakness and energy (somewhat different to fatigue) are improving rapidly. Afternoon naps have been replaced by dog walking.


One final side effect which hasn't yet improved significantly is the stiffness and locking of my finger joints, although I've been able to continue playing my ukulele. I'm sure that in a couple or 3 months, that will resolve.


So to pull it all together, my radiotherapy and bicalutamide finished about 4 to 6 weeks ago, and I feel pretty good..


I've joined Slimming World to try to get rid of my embarrassing gut, I'll report on this is due course (if successful)


Good luck, a positive attitude is your greatest ally!!!

User
Posted 20 Apr 2018 at 18:38

I think there is a bit of confusion Tykey - bicalutimide is given as daily tablets not as an injection. I think you may have been on a LHRH injection instead?

Graham, the general rule of ‘it takes as long as you were taking them’ isn’t quite right on its own. You need to add into that some allowance for how the symptoms developed - so side effects that appeared very quickly after you started bicalutimide will often disappear very quickly once you stop taking the tablets. Side effects that developed slowly over time will hang around much longer after you finished treatment. Moobs tend to be permanent and in our house the hot flushes also turned out to be a permanent thing.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Apr 2018 at 20:02

Hello

Thanks for the replies. Sadly, it is quite hard to distinguish which symptoms came from where, as I had HT and RT very soon after my delightful prostatectomy. The only side effect I can definitely pin down to HT that happened quickly was the moobs, but it seems they're here to stay! The one I want shot of ASAP is the fatigue. Muscle wastage has taken its toll, but I can build up on that one, fatigue permitting. The hot flushes, ED, trashed libido, crap skin, spare tyre, vivid dreams etc etc will go in their own good time I suppose. Fatigue for me is definitely the headliner.

User
Posted 20 Apr 2018 at 22:40
Graham

Can I ask how quickly the side effects develop? I've been taking bicalutimide for two months. Fatigue does seem to be an issue but, apart from that, I'm fine. I've even started to think that the bicalutimide isn't working because I seem to only have one of the side effects. Im due to be on it for only six months as an accompaniment to radiotherapy.

Ulsterman
User
Posted 20 Apr 2018 at 22:42

Ulsterman, are you on 50mg or 150mg?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Apr 2018 at 07:59
150mg, Lyn.

My oncologist said the side effects with bicalutimide were less severe than other hormonal treatments, especially for younger men. Maybe I've been lucky, or maybe this is the calm before the storm.

Ulsterman
User
Posted 21 Apr 2018 at 09:04
You may be right, Lyn. I was taking the tablets, which were Bicalutamide, before going on to the injections. I had just assumed it was the same stuff.I have just double checked and noted the injections were Prostap, whatever that is. Im sure I've answered and encouraged someone, maybe not Graham at this time😉😀.
User
Posted 21 Apr 2018 at 14:23

Thanks for your input anyway Tykey! Ulsterman, I'm really not sure how soon and which side effects can be credited to the Bicalutamide. as there really wasn't much time between the RP, the HT and RT. So many initials... I do know that when the fatigue of the RT finally started to wane, I was left with a level of fatigue from the Bical, and still am. I imagine the Tamoxifen added to that.

Be very glad that you are having few side effects, though it may be worth chasing up the Tamoxifen option if/when breast growth and pain become an issue. It is acknowledged to be more effective than RT to the chest in managing that side effect. Also, I am jealous that you have been prescribed Bicalutamide for only 6 months! I got two years, but hoping to reduce to 18 months for good behaviour. Perhaps it might be worth a conversation with your onco as to why only 6 months?

User
Posted 21 Apr 2018 at 22:32
Graham

I'm already on tamoxifen as moobs wasn't an option! 20mg per week.

The six months of bicalutimide is based upon emerging trial data, I think. My oncologist wasn't going to give me any HT at first but then attended some big conference in San Francisco and came back and said she was persuaded that I might benefit from HT.

I know six months sounds good, but things are good at the moment with side effects apart from tiredness and so, if I continue to tolerate the bicalutimide, I might ask her if I would benefit from continuing for longer. I start my radiotherapy next week and have been warned that will make me tired.

By the way, greetings from Chisinau, Moldova. I'm here for the weekend. Only Russia to go and I'll have been in every country in Europe. Determined not to let a PCa get in the way of my wanderlust. And yes, Lyn, Gambia is still a target country.

Ulsterman


User
Posted 22 Apr 2018 at 21:22

Hi Ulsterman

Thanks for the info. I am most intrigued by the trial that recommends 6 months - don't suppose you'd have any idea of the trial name? As regards fatigue, the RT totally flattened me. Don't know what programme of zapping you're getting, mine was 27 doses to the prostate bed and 20 to the lymph node area, both at the same time. I'm told it was quite an intensive treatment, and only just been passed by NICE a week before I started it. Made sense, as the stupid cancer had also been found on a lymph node during surgery.

Hope your travels were good, and Russia happens before the big leaders make it impossible!

cheers
Graham

User
Posted 22 Apr 2018 at 22:27
Graham

I'm having 37 sessions of VMAT radiotherapy. I think this a more up to date version. I had a recent PSMA scan which showed my prostate bed clear but two nodes with tiny traces of cancer.

I'm in Transnisria today. That's a breakaway republic which isn't officially recognised by any other country but does have Russian military roaming around.

Ulsterman
User
Posted 22 Apr 2018 at 22:43
Originally Posted by: Online Community Member

Hi Ulsterman

Thanks for the info. I am most intrigued by the trial that recommends 6 months - don't suppose you'd have any idea of the trial name?




I suspect it is the other way round - that Ulsterman's onco heard in America that salvage RT is more likely to work if you have HT as well.

All the data shows that RT / HT is more effective than RT on its own, and that the longer you stay on HT the better the outcome.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Apr 2018 at 22:48
Graham

I think it was the radicals trial which looked at the benefits of combining HT with RT

My oncologist said she wasn't convinced of this but then went to some conference in California and came back and told me I may well benefit from six months of HT.

Ulsterman
 
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