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Apalutamide

User
Posted 11 Feb 2022 at 16:46

Hi All


I've continued to read and keep up with posts !  I thought I would post an update - my husbands spot on his pelvis is not cancer ...but a fracture from the radiotherapy the Consultant says.  His PSA has come down to 0.3 from being on Bicalutamide for 4 weeks.  As he doesnt know where the micro mets are SABR is obviously not happening so he's decided to add Apalutamide in with the Bicalutamide rather than go down the chemo route.  He said this would be better given my husband is 57yrs and it would have less impact on his quality of life and juggling work.


My husband saw the Consultant in person this time but was only allowed in on his own and he struggled to remember some of what as said not helped by the fact he doesn't really understand much about the various treatments etc as he asks me to google and read so that he doesn't get panicky and stressed and felt quite scared of the side affects of this proposed drug.  He did say the Consultant talked about some cancer cells that are killed off by the Apalutamide and said that sometimes some aren't ....and then talked about longevity and some cases going into remission for 10 years or more.  He also said that he was told he would stay on this drug whilst the PSA was going down and he tolerated it and chemo is still an option but he'd have to have monthly liver and kidney function tests.  So does this mean that he's talking about Hormone Therapy longevity being 10yrs+ or my husbands???!!!  Also, I thought I'd read that Apalutamide was used for non-metastatic prostate cancer ...but my husband said "he used the word metastases at one point ..but I dont know what means" - so am I right to assume the Consultant believes he does have micro mets?  Sorry for the questions but I've been trying to piece together what my husbands was told - I always prefer when my husband has consultations over the phone as I can sit and listen, understand and explain it later to him when he's forgotten!


Any insight would be gratefully received!!!


Thank you !!!!


Alison


 

User
Posted 11 Feb 2022 at 17:05

Yss, with a PSA over 0.2 and clear scans, there are clearly micromets somewhere. I suspect that the onco was giving a broad brush estimate that with apalutamide now and other treatment options in the future, your OH might be around for up to 10 years; we know that some men do even better. There isn't any data to suggest that apalutamide, enzalutimide or abiraterone actually extend life by 10 years 😪

Edited by member 11 Feb 2022 at 20:25  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Feb 2022 at 17:21

I appreciate your honesty LynEyre - its kind of what I've been thinking myself having done so much reading over the two years but haven't actually voiced to myself ..if that makes sense, without sounding like a complete loony !!!  I have to keep positive etc continually for John as he keeps hoping for a "cure" and I keep saying when/if this drug fails or he has to come off it there will be plenty more things for him to try.


 


Thanks again !


Alison

Edited by member 11 Feb 2022 at 17:22  | Reason: typos!

User
Posted 11 Feb 2022 at 18:43
He may be the man who lives for 20 years 🤷‍♀️ I think I might be tempted to say to him "well even if it turns out that it can't be cured, it can still be controlled for a lot of years."
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Feb 2022 at 18:49

Just thinking about it a bit more - it may be that because the scan didn't find any mets, the onco has been able to say he is non-metastatic and that is why he has been allowed to have the apalutamide. Lack of certainty might be frustrating but if it gets you access to a treatment you wouldn't otherwise be offered, it's a win.

Edited by member 11 Feb 2022 at 20:25  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Feb 2022 at 19:32

Actually that could be it - SABR was always on the cards, but with the clear scan I assumed he would suggest chemo which was mentioned before ..or do nothing and just wait for the PSA to go higher then rescan, hopefully find it and zap it.  He's always mentioned the probability of micro mets and this has to be the case but maybe like you say this is how he has wrangled apalutamide (which I am sure I am spelling differently each time I type it !).


Thanks again Lyn - I so appreciate your advice !


Alison

Edited by member 11 Feb 2022 at 19:38  | Reason: Not specified

User
Posted 29 Apr 2022 at 11:39

Just posting an update - my husband has been on Appalutamide for just over a month with no side affects other than slight fatigue, the Consultant has just rung to say his PSA is undetectable but his testosterone is "twice the upper limit of normal" so will be moving him from bicalutamide to Prostap injections and said to continue with both - he reckoned my husband will continue with these drugs for another 2yrs then they will be reviewed, but said "there's a lot of water under the bridge before we get to that point though" - not sure want he meant by that though!!

Edited by member 29 Apr 2022 at 12:42  | Reason: Not specified

 
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