Update on restaging cancer

[Shamrock46]

Took a little time to process MO appt. last Tuesday...no good news. MO very concerned about doubling time of PSA so quickly. Tho my husband's had many SEs from Xtandi and is now on 1/day, she coaxed him into going back to 2/day for 6 wks./next appt. that will be preceded by another round of bloodwork to see response, if any. If he again has serious SEs she said to stop it again and call her. She also rec'd Abiraterone/Prednisone but due to several cardiac issues my husband doesn't want that since he feels any SEs would land him in the hospital. She also said that if the Xtandi fails she might rec'd Casodex. The name was familiar but I didn't connect to bicalutamide until we got home. He had been on that med in 2019 shortly after recurrence was discovered and his PSA again rose to 18...leading to his referral to MO and the start of Xtandi in 2020. When I made the connection after getting home I sent the MO a message to check my husband's records from the other dept. to confirm the bicalutamide and we don't think that's the answer. Yesterday another site moderator responded that after bicalutamide stops working it then feeds the cancer and not taking it again is a good call. She then said that at the rate the PSA is rising his prognosis now is about a year. We've decided to live each day as it comes and try not to be gloomy. My husband says "it is what it is" and we'll do what we have to. He doesn't want anything that will cause him more SEs, tests or hospital stays so we're on standby for another 6 wks. I was prepared for what she said but it's still hard to hear someone say it out loud.

[Tall_Allen]

You don't have a profile, but it seems there are a lot of medicines that can prolong life and QOL.

[Shamrock46 in reply to Tall_Allen]

I think there are too. He was 1st diagnosed in 2014 & had Davinci surgery...bad reaction to drug Toradol that caused acute kidney failure & 11 days in hospital. So much incompetence that I had to run to hospital in middle of 1 night to call a Code Blue & saved his life. Arrogant surgeon told him to "man up" 2 mos. later when he still complained of pain, finally ordered ultrasound to shut us up and discovered seroma that needed another procedure. Recurrence in late 2018 when he was in ER for kidney stone...changed all drs./hospital. Started Lupron/bicalutamide...scans showed mets to bones. PSA continued up... referred to MO. Started Xtandi 2020 with lots of SEs. During that timeframe we discovered he'd had a silent heart attack that killed 1/3 of his heart...now has an implanted defib. He also had a blocked carotid that needed surgery and another one to remove a hemolock from the original PC surgery that dislodged and attached to his bladder. He's been through a lot and I don't blame him for saying "enough" even though he's a brave and strong warrior type who hit a softball across the Illinois River once upon a time. Through all the above he'll always be my hero during our 57 yrs. together! He doesn't think he has much QofL these days as he gets weaker and more tired. This is a rotten, ever-changing disease and I pray nightly for all who suffer with it and from it!

[Hidden in reply to Shamrock46]

I feel for you Shamrock… 57 years, we are 50 years. Jim is now on zytiga and prednisone. He is feeling better these days. His appetite is back, gaining a little weight and exercising. Xtandi kicked his butt, we stopped it, although some men, I see do very well on it.. good luck with the Docs, I hear you!

[Shamrock46 in reply to Hidden]

Thank you! We're trying to focus on the fact that it's been 9 yrs. since original dx so he's beaten a few odds along the way! This disease is relentless as just when you get a teensy bit comfortable with "undetectable" it jumps up and smacks you again while trying to control/withstand all the other SEs that keep multiplying/changing. Frankly I'm also wary of the prednisone which I think would add other problems. We got married right out of H.S. and have had a great life with only minor problems like everyone else. He's just tired of PC, I think, because he knows there's nothing that will make him feel better, stronger, more awake or more energetic. Can't say as I blame him! Blessings to you and your husband as well!

[Hidden in reply to Shamrock46]

yes the prednisone I believe does weaken your immune system but needed as a replacement when taking Zytiga.

[Shamrock46 in reply to Hidden]

No good decisions/answers. You go 1 step forward and 2 back.

[Hidden in reply to Shamrock46]

believe me Shamrock, I hate this. We watch our husbands suffer, so hard to know what to do. I believe every woman on this site understands!!

[Mrtroxely]

There are a few xandi/enzalutamide variants.They have different SE.....

They maybe more suitable for your hubby...

Xandi enzalutamide side effects for me are not good!!!!

There is

Applutimide

Daralitimide

Arbitorone

And??

They work in slightly different way to the ADT.

(I'm not doctor, just my way seeing it .. )

[Shamrock46 in reply to Mrtroxely]

Thank you

[Hidden]

Why have you discounted Zytiga ? My guy had 2 1/2 good years on it. Felt much better on it than Xtandi. But our lesson in all this is that you just have to try it. Watch closely at the side effects. Some landed him in the hospital. Others he’s tolerated better than most. It’s all a crapshoot. But we started out at over 1500 PSA 6 1/2 years ago. Getting ready for our first round of LU177 at this point.

Hope you find something that helps that he can tolerate.

[Shamrock46 in reply to Hidden]

My husband had a silent heart attack that killed 1/3 of his heart and now has an implanted defibrillator and 1 stent. Zytiga has worse SEs for cardiac issues which he believes would land him in the hospital. While on full dose Xtandi he suffered fluid retention around his heart that led to a 2-night stay in hospital with IV diuretics. His body appears to be greatly affected by SEs. Thanks for your thoughts.

[Hidden in reply to Shamrock46]

Xtandi throws my guy into full body arthralgia. Right now he’s on a three-quarter does pending his starting the LU 177. The Xtandi is failing anyway. He’s been on that for a little over a year. What I found is everybody responds so differently that it’s hard to say what will happen with any given drug. But I’ve learned to watch closer after Lynparza landed him in the hospital. I knew it wasn’t going well and I should’ve pulled it before I did.

[MateoBeach]

He seems to be having a terrible time with Xtandi, as is the case for many. I would drop it as not tolerated and switch to abiraterone or darolutamide. He deserves to not be miserable. A personal trial of BAT might be of benefit in controlling the disease and most certainly would enhance how he feels.