The waiting is terrible: Husband has Stage 4 prostate cancer

My husband was diagnosed with stage 4b prostate cancer last November. He is undergoing a triple protocol treatment comprising ADT, abiraterone, and docetaxel chemo. His doctor told us that his cancer is treatable but not curable.

He just had his 4th chemo infusion and is struggling with side effects, such as nausea, constipation, mpsore mouth, and fatigue. It really hurts to see him struggle. But his doctor tells me that he can provide the medical care but my husband desperately needs support from his family.

We're going to see a urology something oncologist at UNC on the 17th... He came highly recommended.
I'm tempted to try DUKE or Mayo here, but want to at least talk to ONE person first!
We really feel like it's so wide spread, I don't know if they'll even have an answer or just deal with symptoms.....

You need to see an oncologist for advanced cancer, and not just a urologist. Definitely make sure you go directly to the right type of doc so you don’t waste time. With his widespread tumors, I think they might recommend aggressive systemic treatment of chemo.
Pluvicto works best for tumors in bones, but not as well for soft tissue tumors. Possibly ADT immediately, then chemo asap, then down the road, Pluvicto for remaining tumors. My husband is at the end of 6 years of numerous types of treatments.

You need to see an oncologist for advanced cancer, and not just a urologist. Definitely make sure you go directly to the right type of doc so you don’t waste time. With his widespread tumors, I think they might recommend aggressive systemic treatment of chemo.
Pluvicto works best for tumors in bones, but not as well for soft tissue tumors. Possibly ADT immediately, then chemo asap, then down the road, Pluvicto for remaining tumors. My husband is at the end of 6 years of numerous types of treatments.

It's a urology oncologist

@beaquilter your story is almost identical to what my husband is going through. Initial PSA in December elevated, biopsy in January with Gleason 8/9, PET in Feb shows Mets. Started Lupron and Abiraterone 2/3 weeks ago. Radiation to start in 3 weeks. Thankful for a great oncologist and radiologist explaining everything. We are southeastern VA.

Thanks! My husband has only done the monthly Firmagon shots because he was afraid of the Lupron side effects after the first shot of Firmagon he didn't want to switch (the doctor chose Firmagon FIRST because Lupron raises PSA/ testosterone for a while before it goes down so this way the Firmagon only lowers it) at the 2nd appointment my husband still chose to do another Firmagon shot, he was supposed to do Zytiga too but because he took a bunch of supplements, his liver ALT and AST shot up and he had to go thru a lot to test it wasn't the cancer but all those supplements are gone and the Liver is almost back to normal, so last week he started Zytiga, he was supposed to take 1000mg on an empty stomach but he found several research studies that were made during covid when there was a shortage on supplies, that 250mg WITH food is JUST as effective, so he's doing that... We're going back to the oncologist Thursday, and then we'll start talking about Chemo as well, up until a few weeks ago my husband refused Chemo, but several friends who are medical people urged him to do it. Radiation is way down the road, they are not talking about it now, though we met the radiologist at the first appointment. But the metastasis is all over his body, lungs, bones, spine, hip, lymph nodes etc..... I think as long as my husband is doing the chemo, it's a step in the right direction, but he's already mentally prepared to stop after 4 doses (Dr. Google said something about dose 5 and 6 are not really that effective) but our oncology nurse friend says it's like stopping antibiotics early before you're supposed to, of course if the doctor says something else and if it's worse than death, then stop.... But gosh, such a stubborn patient!
I am losing my mind, my inlaws passed away in the fall (hubby and a nurse took care of them full time at the end, otherwise I was their driver for years) then my mom overseas passed away 2 weeks after my husband's diagnosis! (from grief!- though she had a lot of things wrong already) we buried their ashes under 3 trees a week ago, it made me sad of thinking of all 3 of them so sickly and dying, that there will be a point when my husband will get to that! Right now he doesn't look sick at all and has minor side effects, Chemo will make him lose his hair and probably look more sick!? It just really sucks.

Thanks! My husband has only done the monthly Firmagon shots because he was afraid of the Lupron side effects after the first shot of Firmagon he didn't want to switch (the doctor chose Firmagon FIRST because Lupron raises PSA/ testosterone for a while before it goes down so this way the Firmagon only lowers it) at the 2nd appointment my husband still chose to do another Firmagon shot, he was supposed to do Zytiga too but because he took a bunch of supplements, his liver ALT and AST shot up and he had to go thru a lot to test it wasn't the cancer but all those supplements are gone and the Liver is almost back to normal, so last week he started Zytiga, he was supposed to take 1000mg on an empty stomach but he found several research studies that were made during covid when there was a shortage on supplies, that 250mg WITH food is JUST as effective, so he's doing that... We're going back to the oncologist Thursday, and then we'll start talking about Chemo as well, up until a few weeks ago my husband refused Chemo, but several friends who are medical people urged him to do it. Radiation is way down the road, they are not talking about it now, though we met the radiologist at the first appointment. But the metastasis is all over his body, lungs, bones, spine, hip, lymph nodes etc..... I think as long as my husband is doing the chemo, it's a step in the right direction, but he's already mentally prepared to stop after 4 doses (Dr. Google said something about dose 5 and 6 are not really that effective) but our oncology nurse friend says it's like stopping antibiotics early before you're supposed to, of course if the doctor says something else and if it's worse than death, then stop.... But gosh, such a stubborn patient!
I am losing my mind, my inlaws passed away in the fall (hubby and a nurse took care of them full time at the end, otherwise I was their driver for years) then my mom overseas passed away 2 weeks after my husband's diagnosis! (from grief!- though she had a lot of things wrong already) we buried their ashes under 3 trees a week ago, it made me sad of thinking of all 3 of them so sickly and dying, that there will be a point when my husband will get to that! Right now he doesn't look sick at all and has minor side effects, Chemo will make him lose his hair and probably look more sick!? It just really sucks.

Good that he’s receiving treatment and sounds like his doctors have him on a plan to address his disease. Being the support spouse is tough. Husbands often aren’t the best communicators, planners or organizers. My sisters-in-laws are super supportive and there when I need a listener. When mine was first diagnosed it was a shock and felt ominous. Knowing more about his disease and the plan moving forward has helped relieve those feelings of dread. The plan is to manage the disease. There is no cure but there are lots of options to stop and slow the progression. If one stops working, we try another. Initially we weren’t able to think about the future because it felt like death would be right around the corner. But knowing that men live for many years managing prostate cancer has helped lift that dark cloud. If your husband does try Lupron there is a drug, Casodex, they give for several days that blocks the effects of the testosterone surge. I will say all these hormones mine is taking make him a bit more moody. Told him, welcome to menopause.