Dad: no change in Mets in two years psa never dropped below 4

[Daddyishealing]

Hi my healing buddies. I have two questions. One is that my father has over 100 Mets in his body. He's on lupron and exgeva. Did chemo last year and immunotheapy this year. The scans have remained exactly the same except one came back with one of the tumors slightly bigger.

He has asked the doctors how it it even possible that nothing at all could change and is it possible that some tumors are dead or inactive. The doctor said noone could know without biopsy but he doesn't think so. Is it even possible for inactive or dead cells to show up on scans?

The doctor said when he feels it's necessary he'll add casodex or xanti(sorry think spelled wrong), but why wait?

Lastly my dad says he's not in too much pain yet he's very slow to walk. His overall mobility is just very slow and that bothers him.

My mother died of lung cancer Aug 9th, and I'm horribly afraid to lose my father too. He's the best dad in the world, and I'm desperately trying to get him to get a second opinion or to use natural medicine but I didn't get far in that one.

Ty everyone in advance for the answers, the hope, and the sheer intelligence you always pass on to me. Keep smiling my heros!!!

Love Erica

[Tall_Allen]

I'm sorry for your loss. I know how devastating that is.

The bone scan shows areas of bone overgrowth that are often caused by cancer there. When there are many mets, bone alkaline phosphatase may be a better measure of progression than PSA. Have you considered Xofigo as he next therapy? It often relieves the pain, and he can move onto Xtandi after that. Another round of chemo (Taxotere or Jevtana) may provide relief when Xtandi fails.

[Daddyishealing in reply to Tall_Allen]

Does xofigo get added to lupron or does it replace it. I'll have him speak to his doctor and I'll do some more research. If you have any links please send. If not I ty so much for your condolences and for your advice. My dad said after immunotherapy the psa is no longer an indicator according to his doctor but his psa never dropped under four, and I thought the goal was undetectable but it appears they are saving other meds for when one fails. I have seen on here that such does happen, and then one has options but I think they don't want to minimize options for when or if this progresses. I understand that's the nature of the beast, but I truly believe in 5 to 10 years they will have so many more options and I know he's strong enough to see those days. I'm just frightened. You and all the men on here continue to amaze me. You guys rock!!!! Thank you

[Tall_Allen in reply to Daddyishealing]

Xofigo is a radiopharmaceutical given concurrent with Lupron. Don't "save" anything for later. Survival is extended more when used earlier.

[Hidden]

I know it's not the most important thing, but what is his PSA history? Generally speaking, when progression occurs after first-line ADT such as Lupron, either Xtandi or Zytiga plus Prednisone is added. These are called second-line ADT drugs.

I would be asking the doctor: "Why are you holding off on second-line ADT? What do you need to see before you feel it's necessary to add either Xtandi or Zytiga?" The correct answer to that in my opinion is progression, and it already looks like he's had radiographic progression. I'd be looking for a second opinion.

[ctarleton]

I'm so sorry for the very recent loss of your Mother only a couple of weeks ago.

That is a very short amount of time ago for anyone to be dealing with the loss of a such a close family member.

Your father might also be feeling the physical slow-down as a result of his being on Lupron for 2 years now, besides having done chemo about a year ago. This could be on top of any recent changes around his home for all the little practical day-to-day activities of daily living, and current family grief.

A year or two ago you asked about the possibility of seeing some prostate cancer specialist besides your father's current local medical oncologist for a second opinion. Did you ever find such an expert, compatible with your father's medical insurance, and relatively close to his northern New Jersey location? If not, I would encourage you to keep looking in that direction. You may get more treatment/other Options than you may currently be getting from a local neighborhood oncologist, whose methodology for moving onto some next treatment might be some over-simplification like "let's wait until the PSA gets higher than X, and then I'll start him on the next fill-in-the-blank drug that I can easily prescribe and bill".

Others here can give you leads for finding qualified expert second opinions in the NYC area, as best compatible with your father's medical insurance situation.

[Daddyishealing in reply to ctarleton]

No, he was weak during chemo. And then continue working and closing businesses to move on to his next career. He's not easily discouraged, but he had two opinions but not after I asked. He doesn't have a urologist either. I agree that it seems oversimplified, and I think he wants to get an opinion from Sloan in New York but it's not covered by insurance so it would be just an opinion because he can't travel back and forth for treatment. I didn't realize the lupron could slow a man down so much. When I was on it I only remember distinct bone pain and crying a lot. He doesn't ever want people to worry so he says his pain is not bad but I can tell in the way he gets up and down and that his mornings he can only walk tiny by tiny step . Once he's up long enough his pain gets better but his mornings are slow and painful. He has to be on the lupron and adding casodex I imagine would make him slower. Do you have any similar experience or know someone who has addressed such an issue? Ty so very much for your reply and your support xoxo peace, love, and light, Erica

[2yearsin in reply to Daddyishealing]

The lupron can be more than exhausting. It will definitely slow a man a great deal. I am lupron, had a 6 round course of docetaxel. Psa has began to increase again, about to begin xtandi.

I also have a tough time moving around in the morning, pain management has been key. Currently on hydromorphone, up to 2mg every 4 to 6 hours. I've found taking a dose at bedtime and another 1st thing in the morning is the best way to manage the pain and it certainly has increased my mobility and speed. 8 often don't require any more the rest of the day.Please remember pain management is an important part of treatment for quality of life. I would recommend an appointment with your dad's primary care physician to discuss.

Tell him to keep fighting, and pain management is a vital part of the battle.

[Daddyishealing in reply to 2yearsin]

You are awesome and I live in chronic pain so I agree on pain management. Your approach of meds at night and early in day is also quite astute. It helps me and I'm on tramadol for other issues, but he despises pain meds and he doesn't have a good reaction to them but when he had to he took the least amount for highest effect and got through it. I admire your perseverance and your pain control methods . Not everyone is so aware and some doctors as they did with my mom will throw every drug at a cancer patient. She regained her quality of life when she bent her will and took dilauded as prescribed but she had tumors all down spine and doubling in size at rapid rate. I look back and think how did she manage with so very little pain control. Her stubbornness and fear of meds truly stifle life from her and I saw her smile and not angry in pain once she stood on pain regimen and then learned that there was perhaps one pul she could miss in the day. I am behind ya man, every step of the way!! Keep me posted on xtanti xoxo ty for info. I'll pass it on.

[ctarleton]

You might be interested in getting to this up-coming event next month, perhaps to make "connections" to some of the leading prostate cancer folks of note in the NYC area.

"NYC Prostate Cancer Summit: Advocacy, Awareness and Education to Empower Patients and Loved Ones" Saturday, September 22, 2018 @ 8:00am

harlemonestop.com/event/266...

Charles

[Daddyishealing in reply to ctarleton]

Ty Charles. I would be very interested. Thank you

[Daddyishealing in reply to Daddyishealing]

I'm wondering if it's talk about treatments , new treatments on the horizon, and info on treatment or if it's just a how to live with cancer type of thing. If I go I can see if I can do recordings to an SD card and get that to you. Don't let me forget because I'm quite forgetful lol

[ctarleton in reply to Daddyishealing]

Thanks, but I don't anticipate needing the SD card recording. I'm out in north central California, and I just thought that up-coming local meeting might be of interest to folks in the NJ / NYC area who are looking for information or connections from the scheduled speakers and their teams.

[George71]

he would qualify for the lu-177 trial in Houston or could go to Germany

[Daddyishealing in reply to George71]

A friend of mine on this board told me there's a trial in Nebraska as well. Ty so much I didn't know if he was a candidate since treatment didn't fail. It kept down progression. It just hasn't shrunk anything so I guess at this point it's weighing side effects with the drug.ty for this info. Hugs to you and healing light. Love Erica

[JimVanHorn]

Hello, I have been on Lupron for 6 1/2 years and recently was taken off to see if my PSA would go up without the medication. I have a hard time getting up and my energy level is low. In my case I have poor kidney function and that caused my hemoglobin to go down below 10. There is a hormone that the kidney releases that tells the bone marrow to release RBC (red blood cells) into the blood. I was given a synthetic hormone called Procrit and I feel better since my hemoglobin has gone up. Also, I am diabetic and on insulin. Insulin is inactivated in the kidneys and so I had to reduce the amount of insulin I was using because I had sugar lows. Each time I used the insulin it would add to yesterday's insulin since it was not being metabolized. So my endocrine doctor lowered my insulin doses. By doing these two things my daily energy has increased and I feel much better. In my case I want to blame my PCa for everything, but I am 73 and need to watch the rest of my health as well. I wish your Dad well and hope he finds out what's causing his low energy problems.

[j-o-h-n]

My deepest condolences on the passing of your beloved Mother. May she rest in peace with the comforting thought that her husband will not join her for many many years. I have been a patient for many years at MSKcc which I consider one of the best cancer hospitals in the world. It's worth another try to get your Father into Sloan because sometimes they make exceptions for certain types of medical insurance overage.

Good Luck and Good Health.

j-o-h-n Friday 08/24/2018 2:13 PM EDT

[dvcarola]

I am so sorry for your loss Erica 😔 Your parents are very lucky to have you. And please know that God gives the hardest battles to His toughest soldiers so hang in there. Your dad will be able to get through this and live on for many more years! Stay strong and keep on shining!