NEPC

[Bird8]

I just wanted to give you all an update. Mike was diagnosed with NEPC from a mass removed from his neck in August. The MO ordered scans on Monday to determine if cancer was stable or if it progressed. He called on Tuesday and wanted to start chemo right away. Cancer has spread to lymph nodes in pelvis and increased in retroperitoneal area. He also has a new tumor on top of his prostate. None of this was seen in scans taken in May. They are starting tx this week (carboplatin+ etoposide + tecentriq). Chemo will be 3 days in a row every 3 weeks with tecentriq (immunotherapy) added in. Has anyone else followed a similar tx plan? How was tx tolerated? How was the response? I am feeling very anxious. We need to have a conversation with our boys about what’s happening and I am not looking forward to that, they are 8 and 10. 😢

[DeanNelson]

Bird8 ... I wish you and your husband Gods peace.

Hopefully TALL ALLEN will respond. Please listen to him, do what he suggests. He is incredibly well versed in the area.

As for the children, I am 55 years old with a rare form of advanced prostate cancer which is very aggressive. My children where 15 and 16 when we told them. Be VERY VERY BRUTALLY HONESY with them, unfortunately. They are old enough to understand. Honesty and being straightforward will be tough but well worth it.

Unfortunately your children, like mine, will become “adults” in shorter time frame than most children. Their life’s already have changed, but you must be strong enough to tell them it has.

I am 16 months into this fight.Unfortunately I am not going to be on this journey very much longer.

But I have prepared my children and made sure they understand what’s going on. We’ve had talks you would normally have with your 20-30’s year old children.

I know it’s not fair, they are just children. But my son told me

The other day. “Life’s not fair, Dad but I am going to make it”

I think I did my job

Peace be with you

[MichaelDD in reply to DeanNelson]

Incredible kids and Incredible mom and dad.... You have done more then your job. You have raised kids that the world is proud to have.

[Bird8 in reply to DeanNelson]

Thank you Dean! I cannot express how much those words mean to me. I had a talk with my boys yesterday. I’m not sure they completely understand, but I’m hoping with honesty and an open line of communication, they know they can come to us with questions. I also hope they know how much they’re loved! ❤️

[j-o-h-n in reply to DeanNelson]

Now you're what I call a real DAD, I wish to correct you however. You said "Unfortunately I am not going to be on this journey very much longer." No one knows the future so who knows how long anyone of us has. One day at a time.... yep one day at a time....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/16/2019 5:49 PM DST

[DeanNelson in reply to j-o-h-n]

Thank you , j-o-h-n.

So you're staying , I can bug you on here for the next 5 years?

[j-o-h-n in reply to DeanNelson]

Sure we both are .... I'm used to it.... my wife has been doing it for years..........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/16/2019 7:48 PM DST

[Tall_Allen]

I think that combination is a good one. While NEPC doesn't respond to hormone therapy or taxanes , it does express PD-L1, so Tecentriq is certainly worth trying. Although it is unlikely, you can ask them to stain (IHC analysis) the tumor tissue for somatostatin.

They had an interesting trial at Duke of copper chloride + disulfuram (both readily available) that is no longer recruiting, but you can ask your oncologist to talk to Tian Zhang to ask for his impressions. Misha Beltran at Dana Farber has specialized in NEPC, so you can ask your oncologist to talk to her as well.

pcnrv.blogspot.com/2016/12/...

[Bird8 in reply to Tall_Allen]

As always, thank you TA! I will keep this info close at hand to discuss with his MO. You have provided me with a wealth of information in uncertain times. It has given me some peace of mind. Thank you for that!

Nikki

[jfoesq]

I am sorry you had to have this discussion with your boys at such a young age. I had a discussion with my kids when I was diagnosed with metPC 7 yrs ago. They were 9,7 and 5. Because of their young ages, I didn't get too detailed but did tell them I had cancer and would be receiving treatment and that the doctors would be doing everything they could. I have obviously responded well to treatment and haven't had any more discussions with them since. My oldest son (now 16) does ask me questions once in a while and I always respond honestly. He is aware of the seriousness of it all. I don't think my 2 other sons grasp the situation and they don't ask me questions. When ADT fails me I will have new discussions with them once again.

All the best to you and your family.

[Bird8 in reply to jfoesq]

7 years! Love it. I hope you get 100 more! ❤️

[monte1111]

Just wanted to wish you well.

[Bird8 in reply to monte1111]

Thank you!