husband with CRPC needing advice

[Betsyhrd]

Dearest fellow Warriors,

I am new to the forum and appreciate reading your stories and advice.

June 2009, my husband was diagnosed with Prostate Cancer with a PSA of 18 and Gleason 7

- Aug 2009, Radical Prostatectomy

- PSA was .03 for two months, then began steadily rising

- January 2012, 35 radiations with lupron. PSA went down substantially. When treatment ended, the PSA soon began steadily rising.

Due to serious side effect, My husband took a vacation from Lupron and focused more on holistic approaches.

Mets are confirmed in lungs, spine and other locations, I believe.

Lupron resumed Nov 2022 and PSA went from 70 to 1.

But only lasted 6 month. As of May 2023, PSA is rising and almost doubling monthly.

May 2023 1.04

June 2023 1.12

July 2023 1.32

Aug 2023 2.15

Oct 2023 4.51

Nov 2023 7.98

Unfortunately, my husband does not tolerate Lupron well, he has significant hot flashes, nerve pain, neuropathy in legs and feet, shoulder pain, mood swings, some depression, weight gain and fatigue. Of course the recommendation is to start Zytiga with prednisone and continue with Lupron. My fear is if he stars Zytiga, quality of life will decline and side effects with increase.

He has so much more to accomplish in his life, such one being publishing his memoir, that I’m not sure placing a bandaid on the cancer with Zytiga is worth it. There is no guarantee that another treatment would slow down the cancer very long.

We would love to hear from your experiences on Zytiga and possibly convinced me that my thought process is wrong.

Thank you so much

Betsy

[Tall_Allen]

He only has the choice between intensive hormone therapy or painful, crippling metastases.

Yeozah was approved for hot flashes in menopausal women, but it works well in men, if he can get it.

[Betsyhrd in reply to Tall_Allen]

Thank you so much for your reply TallAllen. We value your expertise. Forgive me if I sound naive, but would we expect the Zytiga to help more with preventing pain from Mets or more with reducing PSA to slow the growth and spread? I realize nobody has a crystal ball with an extract timeline, but is there an average timeframe that intensive hormone therapy will work. Again, I understand everyone is different, but is there an average expectation? I just have this impression that’s it’s a few months, especially given the aggressiveness already

Thank you

[Tall_Allen in reply to Betsyhrd]

It accomplishes both- all PCa medications relieve pain and slow progression.

[Benkaymel in reply to Tall_Allen]

Unfortunately, Veozah won't be considered for approval in the UK until at least late July 2024.

[Betsyhrd]

thank you

[duke69 in reply to Betsyhrd]

You may want to have you husband try Orgovyx instead of Lupron for his ADT. I have been on it and Arbiterone Acetate (generic Zytiga) for almost 2 years with the only side effect being fatigue. Within 3 months, my PSA went to undetectable (from 30) and has remained undetectable throughout.

Of course everyone is different, but that had been my journey.

[Betsyhrd in reply to duke69]

That’s wonderful news! Thank you for giving us hope. Wishing you continued remission

[GP24]

Xtandi is now approved as a monotherapy without Lupron. This will not lower testosterone and estradiol and therefore avoid many of the side effects you mention.

[Gl448 in reply to GP24]

Awesome. I wonder if NUBEQA could be the same.

[GP24 in reply to Gl448]

Similar results showed this trial for Nubeqa, but this is not FDA approved:

urologytimes.com/view/dr-to...

[Betsyhrd]

thank you. That is great information and will help us present questions at our Next visit as to what treatment to choose. Do you know what the benefits of stopping Lupron and starting Xtandi as a monotherapy might be. My husband’s Testosterone is currently 8.

[GP24 in reply to Betsyhrd]

Xtandi will cause fatigue and gynecomastia as side effects. I expect it avoids the following: hot flashes, mood swings, depression, weight gain, muscle loss, reduced sexual interest, bone loss, anemia. All this is caused by lack of testosterone and estradiol.

Xtandi monotherapy is not quite as effective as Xtandi + Lupron but better than just Lupron . I mentioned it because you asked if you could avoid side effects.

I would add Xtandi to Lupron right now and then not get any further Lupron injection. It will take quite a while for testosterone to recover.

[Betsyhrd in reply to GP24]

Thank you. This is advice is extremely helpful. I understand and agree very much.

Another question: if someone is no longer responding to Lupron alone, why stay on it? Is the purpose to keep testosterone down despite rising PSA?

[GP24 in reply to Betsyhrd]

The reason/hypothesis is that you have both resistant and non-resistant PCa cells in your body. ADT will then just stop the non-resistant cells from growing. Xtandi will do that as well plus stop some of the resistant cells.

[vintage42 in reply to Betsyhrd]

One other side effect of Xtandi from xtandi.com --

".... If you take XTANDI, you may be at risk of having a seizure. Avoid activities where a sudden loss of consciousness could seriously harm you or someone else. Tell your doctor right away if you lose consciousness or have a seizure… XTANDI treatment may increase your risk for falls and fractures..."

[Benkaymel in reply to vintage42]

This is a very rare SE though.

[chickgreen]

I had huge trouble with Lupron while on the three month doses. I have switched to 1 month doses and find that the drug is tolerable for me, at this level. I would prefer Orgovyx, I think, but my insurance company would prefer that I fail a few other drugs before they cough up the money for that.

I have had two 8 month stints on Zytiga. I always took mine when I got up in the middle of the night to pee, and avoided some of the side effects that I have heard from others. But in both of my experiences with Abiraterone (zytiga) I ended up with an uncontrolled rise in blood pressure

[Betsyhrd]

thank you all so very much . You all are such blessings and a wealth of knowledge and valuable experiences. Fight on!!! You all !!

[London441]

Whatever drug combination he chooses, the more exercise he gets the less his side effects will be. Both weight bearing and cardiovascular. Very challenging but very worth it.

[Lettuce231]

Hi, I've been on Lupron 3 monthly, Zytiga 500mg with food and Prednisone 5mg for about 5 years. The side effects are tolerable because I'm still here, the PSA has been undetectable for I'm guessing 4 years.

Your husband might be like many of us for whom it works. Please try 🙏 it.

I wish you both all the best.

[Concerned-wife in reply to Lettuce231]

The study that was published was 250 mg of abiraterone with low-fat food.

[Lettuce231 in reply to Concerned-wife]

When I started Zytiga the dose was 1000mg on an empty stomach. A study was later done with 500mg with high fat food. Now its 250mg with low fat food.

I have mine with a fried egg on toast and a yoghurt. It's worked well for me. Absorption.

[Concerned-wife in reply to Lettuce231]

thanks for explaining!

[Lettuce231 in reply to Concerned-wife]

You're welcome. You need to speak to your oncologist regarding where to commence, 250mg might be too low, you can always reduce the dose later if you're getting good results.

[Gearhead in reply to Lettuce231]

My experience is like Lettuce231's: Lupron & Abiraterone (Zytiga) for 5 years. PSA quickly decreased from 111 to <0.1. Bone met not growing or painful. Side effects are awful but more tolerable if you realize that this is the new you and quit comparing to the old you.

[Lettuce231 in reply to Gearhead]

Very true " the new you " good call.

[Ramp7]

I was originally staged a Gleason 7 (3+4) after my surgery some 16 years ago. Followed a year later with radiation. Finally did Lupron / Zytiga for 18 months. Tried Pluvicto, temporary halted for 6 months. Moved on to BAT. QOL life has improved and PSA is stable.

[Peealot]

Gleason 9 diagnosed in 2013. Radiation treatment and Lupron started. With lupron, few side effects but some random hot flashes. Lupron controlled PSA for a good seven years. Three years ago, PSA rose and Zytiga and Prednisone were added. I've not experienced any bad side effects with this treatment over the past three years, and it has been controlling my PSA count.

Mid December next Oncology appointment with a blood test one week before. Since I see the results on line pretty soon after the blood test, I'm anxious to get this behind me and hoping the treatment is still effective.

Everyone tolerates meds differently. I suspect Zytiga can give your husband the time to finish his book. Good luck.

[Bowmaster]

Sorry to hear about your Husband Betsy but we are all in the same boat . It is good for Us to talk and ask about what is the best to do with our problem ! To tell you the truth I am in this game of prostate cancer since 2002 and I can say that NOBODY really knows what is best for it . I was operated in Toronto and now I am living in Bulgaria and am faced with the same problem as you . My PSA started going up since 2007 and hasn't stopped ever since . Yes I have been to many hospitals and Doctors with out any help . They kept on telling me not to worry and the PSA kept on going up and now it is 109.9 if you can believe it . It is only when I started demanding to have PET scan done that the truth came out . I now have mets all over my pelvis and limph nodes which shocked me and the doctors ! So here we go the panic is on . The day after tomorrow I am going to the big City to start hormonal therapy for six months and then they will decide what will be next treatment . P.S. I HAVE NEVER TAKEN ANY DRUGS OR TREATMENTS SO FAR . Good luck to you and your husband . I will pray for him .

[Jewelrylady]

My husband is on Lupron, Abiraterone (Zytiga) and prednisone. His only side effect currently has been hot flashes, and not that bad. In the beginning, he had some brain fog, but that has gotten a lot better. He does exercise regularly (gym 3x/week and walking a couple times a week). His PSA and testosterone are in the nondetectable range. He will be finishing up his 5 sessions of SBRT this week.

Has your husband had any genetic/genomics testing. If he has any mutations there might be medication that could help. I’m so sorry he is going through this.

[Break60 in reply to Jewelrylady]

One .1 mg estradiol patch changed weekly will stop hot flashes.

[j-o-h-n]

Greetings Betsyhrd,

Thank you, I always appreciate it when I'm lumped in with a group that's referred to as Warriors. My wife likes that I'm included..... my ex-wife hates it.

Being a part time warrior...... I would like to ask your Dear Husband's age.

Also, if he doesn't mind I would appreciate it if he adds me to his memoir, I would normally write my own...... but I forgot everything.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/25/2023 3:35 PM EST

[Break60]

Estradiol patches have worked for me in lieu of other ADT meds.

[jackwfrench]

I have Gleason 7 w spots outside the pelvic- my MO pointed me to the 30% better Failure Free Survival rate at 3 years in the STAMPEDE study Arm G than Lupron alone so we added Zyt to Lupron and PSA NOW .1 from 2.2. I had Very mild SE until I added Zytiga. Trying Black Cohosh now but he may prescribe vedlafaxine for the hot flashes as I am not getting much result- and yes Orgovyx is reportedly less SE than w Lupron, but in my experience Zytiga does add SE.