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Extreme pain related to Decapeptyl 22.5mg every 6 months

User
Posted 04 Feb 2023 at 18:26

My father is 73yo and got his first shot of decapeptyl 22.5mg in June 2022, without any major side effects. Later he went through 28 radio sessions, because of an advanced local prostate cancer, and last December 2022 he got his second Decapeptyl 22.5mg injection.

Since that second injection he is living in a hell. He suffers from heavy bone pain, we cant touch his arms or shoulders without hurting him. He is unable to stand up, so he cannot walk, and he cant being laying down in bed either, because of the pains. That extreme pain has caused a heavy depression, which is being treated now with medical help, as he express he doesnt want to live anymore like this. He is suffering a lot and going through an enormous pain and we feel the frustration of not being able to help him more.

His next decapeptyl 22.5mg injection is scheduled for June 2023 but he has made very clear he will not take it, so we will have to look for alternatives. Taking into account that he took the last injection only 6 weeks ago, has anyone gone through something similar or does anyone know how much time can pass untill those horrible side effects get a bit better?

I want also to thank all this community, we are from Barcelona and I havent found a similar place to express our experiencies in any spanish forum. 

Albert

 

Edit on Sunday 5th February:

First of all, I want to thank all of you who have dedicated part of your time to answer my question.

Finally, my father passed away this morning, while he was sleeping. Now, the doctors tell us that his cancer had spread to his bones, but neither we nor the doctors had detected it before. Now, we only have the consolation of thinking that he is no longer suffering. Again, I want to thank you all and wish you a lot of strength and good luck. From Barcelona I send a big hug to all of you. 

 

Edited by member 05 Feb 2023 at 22:48  | Reason: Not specified

User
Posted 05 Feb 2023 at 20:13
Is his oncologist aware of the terrible pain? Who has prescribed something for his depression - the general practitioner?

I think the onco needs to be aware of these symptoms - it is not usual for a man to have this much pain as a result of HT so I would want someone to check whether he is possibly allergic to decapeptyl or it has triggered an auto-immune reaction.

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

User
Posted 05 Feb 2023 at 21:50

This is a bit of a long shot but the symptoms he's suffering sound rather like those I had with Zoladex when it was inadvertently given as an intramuscular shot rather than a subcutaneous one, resulting in a much quicker uptake with nasty side effects. I realize decapeptyl is supposed to be intramuscular but is there any chance he was given Gonapeptyl instead? I ask because while they are both triptorelin, Gonapeptyl is supposed to be used subcutaneously rather than intramuscularly [if that's a word].

Jules

User
Posted 05 Feb 2023 at 22:40

For how long is he scheduled to have decapeptyl, two years would be a common figure? Ideally whatever is causing the problem needs sorting out.

Assuming the HT is just to assist with the RT, then the benefits of being on HT are highest six months before and six months after RT.  Though it would be better if he could continue with HT after June 2023, if he stops early he is only increasing his chance of recurrence by a small amount.

If the HT is prescribed for life (which would only be for advanced cancer) then stopping early will definitely shorten his life, and you really need to find an HT he can tolerate.

 

Dave

User
Posted 05 Feb 2023 at 23:37

Originally Posted by: Online Community Member
Finally, my father passed away this morning, while he was sleeping.

I'm sorry to read this as it must be a shock for you all, but as you say, he's not suffering any more.
Part of me is wondering why the bone mets were missed, but on the other hand, I doubt that knowing earlier would have significantly changed the outcome.

User
Posted 06 Feb 2023 at 05:37

Albert,

My sincere condolences to you and your family at this difficult time.

User
Posted 06 Feb 2023 at 07:51

Albert, so sorry to hear of your loss, please accept my sincere condolences. Take care of yourself.

Thanks Chris 

User
Posted 06 Feb 2023 at 10:31

So sorry to hear of the sad loss of your father. May he now rest in peace. Our thoughts are with you and your family x

 
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