Stage 4 Small cell lung Cancer - Dad

Emma1987
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Stage 4 Small cell lung Cancer - Dad

Hello,  sorry for the Novel. 

Not really sure what my intentions are here.. I guess just some support and to not feel alone. 
My dad was diagnosed with terminal stage 4 SCLC at the start of May 24. It was horrible, like my whole entire world just crumbled.. aswell as my mum and brothers. We are all so close, and the 4 of us are bestfriends. It’s weird how it works your so sad then you forget about it for a minute and then just remember that their is this huge gray cloud on your shoulder and it will never go away. The doctors were surprised he made it through the night, the night he was diagnosed, it was that bad. 
However my dad has been so supportive and positive through this journey, in his words, “I’m not just going to lay down and die, and theirs no way I’m laying in bed all day sad and morbid and thinking to myself I’m going to die.. what’s that going to achieve” and his so right. He got us through these first couple of months, he is an absolute legend my dad!

However, my dad, was the most calm, cool collected person ever, he would talk to anyone and everyone, always had time for everyone. If he seen a kid at our local without a standup paddle board he would drive home get ours and take it back down there just so that kid can enjoy himself for a few hours. He is just the kindest person you would ever meet, this is where it gets so heartbreaking.. he is on Dexamethasone and his whole personality has changed. He is angry, irritable, hyper manic, false sense in well being, spending money like we don’t have to pick up the peices, he doesn’t even really acknowledge his grandchildren which just is not him what so ever, they are his everything - just completely different in every single way.. I thought my dad would get sick and slow down a bit, I never thought I would lose my dad still living, which is the hardest part for all of us to deal with right now. He has never spoken to me how he does now he’s just so angry. We understand it’s not his fault and that he can’t help it. He doesn’t even know he’s being like this obviously, I don’t know I guess what I’m trying to say/or get support in. Has anyone changed there steroid and they have gone back to themselves? Or have I lost my dad forever. Because I miss him, selfishly. I know what he’s going through and I know how tough it is on him and I’m so grateful he’s still with us and pray we all have years to come with him, but this personality change is so sad and I just want someone to tell me something positive that I haven’t lost my dad, if this cancer diagnosis wasn’t the hardest thing, how can it now change my dad completely, just a heartbroken daughter. 

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Wayne64
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Re: Stage 4 Small cell lung Cancer - Dad

Hello Emma sorry to hear about your Dad . I have stage 4 lung  cancer too . I have been on immunotherapy for 1.5 years and also went through the dexamethasone thing . The reason they gave it to me was to make me eat I had lost a lot of weight. I don't know why they are giving it to Dad  but when you finally get off it all things go back to normal in my case anyway. I don't know if there's any substitute for dexamethasone but make sure if he gets off the dexamethasone too slowly wean off it I had some bad side affects coming off it to fast  anyway all the best Wayne 

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Emma1987
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Re: Stage 4 Small cell lung Cancer - Dad

Thank you so much for your response Wayne I really appreciate it. Can I ask a few questions? 
Did you have the same side effects from Dex? Personality change, hyper mania, anger etc? I know the doctors are trying to wean him off he was on 8 his now on 2 but doesn’t seem to be changing anything. I’m glad to hear your doing well also! All the best with your treatments 

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Wayne64
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Re: Stage 4 Small cell lung Cancer - Dad

Hello Emma you can ask me anything you want. I was on 4 mg but for a longer than I should have I think. I did go through changes

I didn't have anger I was probably hyper I did  start spending money more than usual I eat like a pig . One benefit was food taste beautiful. He probably won't come back to normal until he totally off the PEX and a few weeks after that. But I stress again take the weaning off very seriously don't take any short cuts I had to ring two ambulances because I didn't . All the best Wayne 

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Emma1987
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Re: Stage 4 Small cell lung Cancer - Dad

Noted thank you, he has another appointment on Tuesday which we are going to talk to the oncologist and hopefully she can give us some advice or better yet a different prescription all together. But we certainly will be following all instructions.  He’s not dad, and we want him back. Thanks again! 

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Wayne64
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Re: Stage 4 Small cell lung Cancer - Dad

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