One year in. : Hi all, I’m new to the... - Advanced Prostate...

Advanced Prostate Cancer

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One year in.

Arel8 profile image
14 Replies

Hi all,

I’m new to the group, stage 4 met — lymph and bone. Pretty scary stuff. Started with Dox which reduced my PSA from 2200(!) to now around 1200. I’m deep in it.

I just had my second pluvocto treatment and hoping for the best.

What’s hurting the most is feeling abandoned by my family, my partner, and one of my kids. Not that they don’t care but I’ve always been there for them and now when I need them the most they say they don’t want to bother me with trivial stuff so that I can heal — feels like code for let’s not talk very often.

I know people handle stress differently and sometimes cannot find the words. Trying hard to stay positive. It’s a lonely fight.

Thanks for allowing me the space to share.

A8

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Arel8 profile image
Arel8
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14 Replies
Lslal profile image
Lslal

I’m 18 months in. Initial PSA was 935, now it’s 0.01. I had triple therapy consisting of lupron, chemo, Zytiga (with Presnisone)

Arel8 profile image
Arel8 in reply toLslal

Thanks for sharing. I should also say that I’m on Eligard as well. The fact that you had such a high Psa that now seems so much better is really heartening. Much appreciated.

Arel8 profile image
Arel8

Thanks for the lift! I’ve tried other forums but this one seems very active and supportive. Glad to meet you.

RealtorDude profile image
RealtorDude

I’m going through the same thing. I got involved and joined a group in Healing Strong healingstrong.org There’s so much support and helpful information. God bless

Kaliber profile image
Kaliber

welcome to the group brother. There is top notch medical knowledge available here along with a group of caring brothers and gals for camaraderie and just plain being here for each other. We’re all up the same creek padding the same boat with one oar. We “ get it “ with our concerns, needs and emotional anguish like no one else could. Jump right in.

❤️❤️❤️

Sailing-Todd profile image
Sailing-Todd

They may just be in an initial stage of shock themselves. I know our family were completely thrown by my husband’s diagnosis and it took around six months before conversations started to be normal again. My suggestion would be to chat about all the mundane stuff with them and in time they will likely readjust to the new normal. Let them know you still need them for the everyday stuff! Wishing you well😊.

GTTown profile image
GTTown

it is such a double edged sword. You want people to ask how you are doing but you don’t only want to talk about cancer and get to the point of pity.

in my case, 3+ years in, some people are still very uncomfortable talking about it. I’ve learned to accept people are different.

chipspesto profile image
chipspesto

Yes, scary chapter in life. My circumstance is very similar to yours. I have a second Pluvicto treatment in one week, seems to be going OK.

Family stuff can be strange- challenging. If you can keep active, do so. I have changed my diet to mainly plant based Mediterranean diet with a little meat, seems to help with bone pain.

Get disgusted, then let it go and continue with your own chapter. My thoughts

j-o-h-n profile image
j-o-h-n

Give us some of your bio in your bio page........Don't fret about the family getting involved. Just kid about dying in your house (over and over) till they get the point. If they don't then just hang out with us....... We know, we care.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/22/2023 10:15 AM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

❤️❤️❤️

Cancer2x profile image
Cancer2x

Seems to me they are all trying to hide from the fact that they might lose you someday - sooner than it should be! It’s because the very thought of you not being there is too painful for them to contemplate. They love and care for you too much to even imagine the loss to them.

They will eventually all process those thoughts each in their own way. But you need to convey to them - gently - that you need them now, and let them know how they can be there for you. Each in their own way. Some to help you laugh, some to help you cry, some to listen and just be.

Never an easy thing.

Pax

FormulaRob profile image
FormulaRob

I think I may have been like that to my dad a bit at the beginning. It was because everything else felt so small and trivial in comparison to the cancer diagnosis and I thought it was the right thing to give him some space and not bother him with other things.

I soon realized that he just wants everything to be normal. Normal to him is to let him help me with things and get back to the normal dynamic. So despite going through treatment and all that.. He came to my house for 5 hours to build a wooden platform in the backyard for a shed... and then a few weekends later came over for an additional 6 hours to help me build the actual shed lol.. He wants to help and remain active and helpful so I got rid of the mindset of trying to minimize the amount he can help me especially with physical tasks around my new house.

My point here is that your family's initial reaction is normal. You need to help them realize that what makes you feel better is to continue life as normal.. you are not dead and don't want to be treated like you are. Even after helping them understand it still make take some time to fully transition back to normal

Arel8 profile image
Arel8 in reply toFormulaRob

FR that’s a really thoughtful response and I appreciate you. I’ll take that in for sure.

garyjp9 profile image
garyjp9

Hi and welcome to the group. There is some good advice in this response chain. I would encourage you to try and talk to your family about what you need, as has been suggested above. I envy the men here who do have families/partners, as I do not have either, and most of the friends who were there for me at the time of my diagnosis have since moved on. I've found great information and support from the brothers here and in a couple of local support groups.

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