Advanced Prostate Cancer
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Introduction - Wife/Caretaker of Advanced Prostate Cancer Husband

Hi,

I should have done this a month ago. My husband has Advanced Prostate Cancer. It was diagnosed late June of this Year. It is Neuroendocrine.. the PSA was at about 10 in June..after Lupron and Zytiga and Chemo the PSA has stayed below 1. The Chromogranin CgA score is the main score our Oncologist is using to monitor. Generally this cancer does not raise the PSA level. This started about 1900 but has been down between 150-300 with chemo. We have finished our 5 th of 6 rounds of chemo (Taxotere and Carboplatin) The next path the Doctor is discussing is Xofigo right after the Chemo is done.

We had a scan before Chemo it showed bone mets and some lymph node activity.

My sweetie is tolerating chemo beautifully.

I would appreciate any advice on medications, treatments and alternative medications..etc. Anything that might help. We have 4 young boys who need their dad! ( I need him too!)

Thanks so much for all of your help.

Blessings and prayers to everyone!

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Software Mom, It is great that he is able to handle the chemo with carbo, Small cell(nueroendicrine) can be a tough player, I know of several men that had it, You must be vigilant in fighting this one. I know after intitial chemo they may try adding vp16( etopside). It is good to see that CGa come down , what is the range, and are they using any of the other markers for nueroendicrine PCa?There may be drugs available with genetic testing, which should be done, how recent was his biopsy, with that recent of a biopsy they may be able to use that sample for genetic testing. I will search for more info and post when I find it. We are all here for you, and You are both in my prayers

Dan

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His Biopsy was June 23. The CgA came down but the latest from last week had it back to 300. It was steady in the 150-170 range for a while. They are using CgA Neuroenolase and CEA.. both the Neuroenlase (was 10.2 now it has been normal) and CEA (was .9 up to high of 2.9 which is slightly above normal). At our first appointment he did mention adding etopside to the treatment plan at some point.

They have not done genetic testing and I do not know why not.

Thank you so much for your post!

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Hi there

Don't mind me asking how old is your husband?

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My sweetie was 63 at time of diagnosis. I like older guys :-)

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I'm encouraged they hit the beast hard from the beginning. I was first diagnosed in 2007, and my treatment has followed a more traditional track. No argument from me on that. The point , though, is to tell you I am on Xofigo now, having had the first injection on 9/18. I have been fortunate that this and other treatments I have had have been approved since my diagnosis. There are additional very promising treatments in trials now. Hang in there. The five of you need him--and he needs you. Warm regards to you.

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I am glad your doctors are right on top of this. They are giving him good kemo medicine. My wife is ten years younger, and she doesn't want to lose me either. I know, we husbands are doing all we can to live many more years. We are fortunate to have supportive mates.

Rich

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thank you

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Hi there.

Welcome to this forum. You will find it is very nice here. People are really friendly and kind and there is a lovely atmosphere.

I am sorry to hear about your husband's diagnosis.

I, too, am the wife of a man with advanced prostate cancer and we, too, are going through the treatment with Carbo Platin at the moment after Taxatir didn't make any difference to his liver metastasis.

While I can't really make any suggestions to you as to what path you could take next, I just wanted to say hello and that we are kind of doing the same.

My husband, like yours, is tolerating the Chemo well. I mean, he has side-effects, mostly tiredness, but he is really strong and bearing it all.

It must be difficult with four kids. We have no kids. But I really need my husband too. The thought of maybe losing him makes me cry.

Best wishes

Mel.

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Thanks Mel. I cry over it a lot. I try to do it when he is not around. The prognosis for Neuroendocrine is not good but I try to be as hopeful as I can. I pray a lot. I try to research as much as I can. Right now he looks and feels great.. .better than he has in many years.

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Hi again.

Yes, I, too, used to cry over it when he wasn't around so as to not upset him. I always knew that he was upset as much as I was but that he didn't want to open up to that pain. But last weekend it finally happened that we had a good cry together. We had been arguing about something silly during the day and later in the evening, when we were sitting on the couch listening to music, he suddenly started to cry and said, "I don't want to leave you!" And that of course made me cry. But it was sooo good! Finally we not only know that we can laugh together and organise lots of things together and occasionally argue but that we can cry together as well.

We got great blood results today. My husband's liver function is a lot better which to the doctor seems to be an indication that the Carbo Platin is working.

Like you, I do research a lot. And, like you, I do a lot of spiritual practice.

Mel.

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No medical advice. Just a hug to the both of you from a friend. Cancer is a family disease, it effects not only the person with it but the caregivers as well. Please know that you must also take care of yourself.

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Thank you.. hugs are great. I feel so blindsided by it. Longevity runs in his family(both parents well into mid 90's) so I did not think I would be worrying about this stuff for a while at least not until the kids were grown.

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Your husband will be around long after your 4 young boys graduate from college.

Keep the faith.

j-o-h-n Tuesday 10/03/2017 11:44 AM EST

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I sure hope so. It would be spectacular.

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I had a pretty bad dx and I was hoping to make it through my Daughters HS Graduation, she is this year completing her 3rd year of Grad school. There was a poet in Big Sur named Ric Masten, He was in the old group and had Nueroendicrine Prostate Cancer , he made it past the 10 year mark, and that was almost 10 years ago, there is an order of magnitude difference in treatments forProstate Cancer since Ric Passed. I wish you the best, we are always here for you and your husband.

Dan

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Thanks so much . It is awesome to hear about someone making it to the 10 year mark with Neuroendocrine Prostate Cancer.

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Ric singing his song , for you and your Husband

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Thanks, I love this!

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For those who are reading through this thread and didn't bother to to play the video--GO BACK AND LISTEN!!!

Ric is an inspiration for all of us.

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I just want to echo Dan's remarks to both of you. Don't lose hope. Stay in the moment and take it one step at a time. I don't think I could have gotten this far in my treatment if I didn't follow that advice. Otherwise, it seems so overwhelming and our imaginations and fears kick in. Please keep us updated.

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Thank you. That darned imagination.. I appreciate all of the hopefulness and kind comments and help.

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Hi softwaremon00

We chatted before. I think your husband is about my age. Just curious what PCa staging is he in and what is T N M nos. I think mine is Stage 4 T 3 N 2 M 2. I will be able to confirm with my urologist this afternoon. I am not yet on any conventional therapy as you know. Please keep in touch. Thanks for info on Radical Remission

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Hi Roland632017,

My husband has small cell carcinoma of the prostate. .sometimes called neuroendocrine. They do not do that kind of staging.. or did not. He was diagnosed in June 2017 and he had mets in a lot of places..actually it was a hip fracture in May that determined the cancer.. they were not sure what kind then.. the pathology from the fracture just told them it was a carcinoma.. the oncologist thought it was prostate and sent him to the urologist for a biopsy.. and here we are. The prognosis for neuroendocrine is not good.. but we are not giving up.. we are fighting hard. I think if we had a less aggressive cancer and grown children we would have tried natural treatment first(our kids are still in school).. but his cancer was everywhere and he was really sick.. I don't think he had enough time for natural treatments. I do believe natural treatments can work but I think they work slower. On nutritionfacts.org there is a video about some guys with Advanced Prostate Cancer(Adenocarcinoma) who responded well to diet changes. I am sure you know all of this.

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Just in case you missed this: healthunlocked.com/prostate...

Prostate Cancer Caregiver Community Launches!

You have to take care care of yourself if you want to take care of the man in your life with prostate cancer. Our new community is a place to share strategies for all aspects caring. Emotional, medical, relationship issues, fear of impending grief, sex, love...everything that caregivers feel and think about, but may not feel comfortable discussing in a forum of men diagnosed with prostate cancer.

Please join at: healthunlocked.com/prostate...

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