After Zytiga-Xtandi Fail!

[TommyCarz2]

Following up on a post by "Chris52981", after Zytiga and Xtandi fail, if chemo is the next treatment, how much time do we really buy? Is it Month's? Weeks? or Years?

[MoonRocket]

I'm not sure there are discreet answers. We all learn after reading posts on this site that everyone one responds differently. You might get a second crack at Xtandi after chemo, and you might not.

Then you have all the newer treatments available.

I wouldn't even want to put a number on it.

One's health is also important...if you keep yourself is good health, I'm sure that also adds many months to years of survival.

[TommyCarz2 in reply to MoonRocket]

Quality of LIFE for Me. NOT Quantity. If I were to be told I'd get another 6 months or so, but I might spend 3 of those months in misery due to after effects of chemo, I'd opt out of chemo

[Tall_Allen]

You imagine choices you don't have. You seem to imagine that without chemo, your life will be shorter but QOL of life will be better. I wish that were true! The choices are:

1. Chemo and its side effects for a few months followed by less pain and better QOL

2.No chemo and a great deal of pain and suffering for the remainder of your shorter life.

Sorry to be blunt about it. I've seen men make both choices.

[TommyCarz2 in reply to Tall_Allen]

I'm not trying to imagine anything. I'm simply weighing goods and bads. I've been blessed, as I've responded VERY WELL to adt. I have suffered the side effects, particularly the fatigue, bone pain, muscle pain, severe numbness, pain and tingling in the legs and feet, osteopenia, and spinal fracture. I reads posts on this forum regarding chemo nightmares, and I think, do I really want to go through that to add six months or a year to this dilapidated body???

[Tall_Allen in reply to TommyCarz2]

You are certainly imagining the way you would feel if you take chemo or if you don’t. Your imagined future is wrong.

[London441 in reply to TommyCarz2]

If you have tolerated the ADT for 5 years, you can tolerate the chemo. Do you still have the extra 60 lbs along with the other issues? What do you do for exercise?

[TommyCarz2 in reply to London441]

I've lost about 13 pounds, and for exercise, I do LIFE. Tremendous bone and muscle pain limits what I can do. As little as 3 years ago I was able to do landscaping / hardscaping and gardening. Now, I walk and maintain our home

[MoonRocket in reply to TommyCarz2]

What is LIFE?

[TommyCarz2 in reply to MoonRocket]

LIFE?? it's that thing we do every day, and often take for granted

[MoonRocket in reply to TommyCarz2]

I thought it was one of the many crazy health hacks circulating around. Have you tried joining a gym with a pool?

Swimming is easy on the skeleton but great for cardio and muscles. About 3 months ago I incorporated 30-40 minutes 2-3 times a week. Just tossing out ideas. Feel free to disregard.

[j-o-h-n in reply to MoonRocket]

And it beats having to go to the men's room every time you have to pee.

Good Luck, Good Health and Good Humor.

j-o-h-n

[MoonRocket in reply to j-o-h-n]

No Greeks allowed in the pool area

[j-o-h-n in reply to MoonRocket]

I forgot about that rule.......... thanks for reminding me.......OPA!

Good Luck, Good Health and Good Humor.

j-o-h-n

[jfoesq in reply to Tall_Allen]

Tall_Allen I will be meeting with my MO in a month. I have been on ADT (Lupron and abiraterone) for more than 11 yrs. and will be 66 yrs old and in pretty good health otherwise when I hit my 12 yr anniversary on May 16. My PSA was below .05 for my first 9 yrs, except during my 3 vacations during my first 5 yrs. My PSA began rising about 3 years ago (.06 ....) and ultimately reached .36 2 years ago. My largest tumor was then radiated and I remained on ADT as PSA went down to .05. PSA has slowing been rising since then from: .05 .06 .06 (again) .09 .14 Based on my history and the trend, I expect my PSA to reach .20 or above soon. If PSMA (after PSA reaches .20) indicates growth and/or new tumors, do you have a recommendation or suggestions for what I should consider? My understanding is that adding docetaxel is the usual next step. But- I have also heard some people are trying BAT while others are entering various trials. I have always taken only 5mg of prednisone. Is .10 something to consider? Perhaps Dex? But- even increasing Prednisone or switching to DEX will likely only work for a few months (if they work) so I will need to look at options thereafter anyway. As always, I appreciate your thoughts as well as thoughts from others who are well informed.

[Tall_Allen in reply to jfoesq]

"after PSA reaches .20" At least 0.5, although there is nothing you should do about it until PSA reaches 2.0 or becomes rapid.

"I have also heard some people are trying BAT while others are entering various trials. " Trials of BAT are ongoing. So far trials have been disappointing.

Take it one step at a time!

[jfoesq in reply to Tall_Allen]

As always- Thank you!

[Ztlf in reply to Tall_Allen]

Thank you, TA!! This is very helpful.

[dmt1121 in reply to Tall_Allen]

I have a question. Are there other alternative treatments before chemo or is chemo the only avenue at this point?

[Tall_Allen in reply to dmt1121]

For whom?

[dmt1121 in reply to Tall_Allen]

This TommyCarz2 posting with his conditions and past treatments.

[Tall_Allen in reply to dmt1121]

Chemo should have been first, and would have been if diagnosed today. Lacking that, it should be next:

prostatecancer.news/2019/12...

Chemo works less well and has more side effects if delayed.

[dmt1121 in reply to Tall_Allen]

Thank you. This is very helpful!

[TommyCarz2 in reply to Tall_Allen]

you just confirmed my concerns, AFTER being condescending toward me for daring to question chemo and it's side effects after adt has failed.

[Tall_Allen in reply to TommyCarz2]

That wasn't condescension, it was my experience of guys who save it for last because they do not understand that chemo increases quality of life. It was a godsend when it was approved.

[dmt1121 in reply to Tall_Allen]

I had docetaxel with ADT in response to a STAMPEDE study right after my prostatectomy and I will say that it took its toll on my body but also my have improved my QOL in the long run. However, I am unsure about undergoing treatment using Cabazitaxel after abiraterone fails. Do you have any thoughts about that?

[Tall_Allen in reply to dmt1121]

The PRESIDE trial suggests that chemo can extend the duration of enzalutamide effectiveness.

prostatecancer.news/2022/10...

[Brianne07 in reply to Tall_Allen]

Listen to TA

[Aldo62]

Some men have had success reactivating sensitivity to ADT using BAT therapy. Being done at John Hopkins and other places.

[londoncyclist48]

I am in this exact position. Enzalutamide failed so I am now on docetaxel chemotherapy. I was terrified when they told me about the plan especially as my PSA is still around 0.1. So far, docetaxel is a breeze. No nausea, just some tiredness and irritability in the first 3 days post infusion. Then I'm up and about as normal. I've had chemotherapy before for a different cancer so I was dreading it but it's been fine. How much time does it buy you? I don't know and my doctor declined to guess this also. I think the medics have to wait to see how you respond. I'm personally feeling really good and no back pain. Go for it. You could always stop half way through treatment. It's your choice. Each session is not set in stone. Good luck.

[Trogg1975 in reply to londoncyclist48]

I was diagnosed stage IV and treatment plan was ADT plus docetaxel up front. Like you I tolerated chemo very well. Tiredness and fatigue for sure, loss of hair, loss of taste for a few days, and some other side affects that gradually went away after chemo was finished. I was 61 and in good health. Naturally everyone is different and each new or changed treatment can have different results of different people. Your comment, and mine, are what tommycarz2 needs to hear. I remember what my body felt like before chemo. 5+ years later I can do most everything I've ever done, albeit a little slower. Bottom line don't be afraid of chemo.

[aifernandes]

Hello, I have been searching about future treatments and found out that there is a phase II ongoing trial regarding ZYTIGA(Abiraterone) + PREDNISONE + NICLOSAMIDE. Apparently adding NICLOSAMIDE To the two other medicines, reverts in many cases the castration resistance. You can find more about the study in this link. Apparently the results will come out in July.

Info about Study Phase Ib:

pubmed.ncbi.nlm.nih.gov/337...

sciencedirect.com/science/a...

Info about phase II:

classic.clinicaltrials.gov/...

The Phase II dose in test is: niclosamide/PDMX1001 1200 mg orally (PO) three times daily plus abiraterone 1000 mg PO once daily and prednisone 5 mg PO twice daily.

Hope it can help you. I found it quite interesting

Good Luck, unfortunately we are all fighting this hard battle!

[HikerWife in reply to aifernandes]

According to the Phase II info, you are excluded if you have already been treated with Abiraterone. Bummer.

[Lavender22 in reply to aifernandes]

aifernandes, Many thanks for posting this trial. Sounds promising. My husband fits the circumstantial description, but not the criteria ( he is currently on Abiraterone — but it is failing). It sounds as if phase 2 has been completed and reports will come out in July. I wonder I’d the trial will be broadened to include those on Abiraterone? I’m not really sure how that can determine effectiveness of the niclosimide without this population? We are going to make some new choices soon….

[aifernandes]

If you read the articles the solution comes for people where Abiraterone +prednisone is no longer working, so I need to check the information you provided. Thanks for your input

[Ramp7]

After Lupron and Zytiga failed me, I enrolled in a trial study at Dana Farber, LuPSMA177. I was Chemo naive. The trial bought me another year. PSA started to slowly go up afterwards. Since then I have moved on to BAT after meeting with Sam Denmeade at Johns Hopkins. urotoday.com/conference-hig...

[anonymoose2]

I get from my MO when I ask how long will I get with a procedure. The response, We will see. If they skim over the question then who can say in all honesty how long we have?

My thinking I’m not in Hospice so that’s a good thing. When Hospice is the only answer then most likely 1 to 3 months at best. I’ve done some research on the drugs they use in Hospice and it seems to be 8 drugs for conscious sedation so you are comfortable and at that point you aren’t concerned about time but in a very relaxed comfortable state of mind and very little or no pain. That’s my end thought on that last time in my life.

[SeosamhM]

I'll weigh in with my personal opinion/answer based on my experience: We add YEARS with chemo. But, like any treatment, timing is everything and an understanding of the standard-of-care (SOC) paths is helpful. Regarding this last, chemo IS SOC in mPCa at some point in every man's experience.

No, chemo isn't great to go through. But, beyond doubt, it (and radiation) has helped me extend my life (see my bio if you want more). I actually trust these more to ultimately help my pain and discomfort than the wizardry of ADT and the novel anti-androgen agents like abiraterone and enzaltamide and their host of nasty side effects.

Speaking of nasty side effects - since you have a history of osteopenia and spinal fracture, you need a bone protector like Xgeva, but understand that this could be the leading cause of your bone and muscle pain. I simply couldn't tolerate it. I encourage you to discuss this with your MO and maybe explore alternatives (a bisphosphonate, maybe?)

Keep on keepin' on, brother. - Joe M.

[j-o-h-n]

Tommy, I think either choice would be a good idea to stick around....... unless you're married..........

Good Luck, Good Health and Good Humor.

j-o-h-n

[DanHo]

After Xtandi Failed, I started chemo last August and finished in early November. I stayed in remission until Early March.

Chemo not too bad, some fatigue.

Waiting on insurance approval for Pluvicto.

Dan

[oilcan4]

Zytiga and Xtandi failed my husband. He did each for 6 months. He then had carotid artery surgery and it was 12 weeks before he could start chemo. He had 3 chemo infusions and his PSA was not going down. They stopped the chemo and he then had radium 223. His bloodwork was not holding up to the treatments and radium 223 had to be stopped. His platelets were so low he could not have any further treatments. They tried blood transfusions and bags of platelets but it wasn't helping. He was in Hospice and sedated because of urinary problems. From his first diagnosis was 23 months.

[Brbnbrn]

I'd say it's all individualized. My husband was on 37 rounds of Jevtana after the other treatments failed. Just long enough for the FDA to approve Pluvicto. We're praying for another "thing" post Pluvicto until there is a cure or something similar to a cure. That's our deepest hope and prayer. In the meantime, making memories and living life as much as possible!There's hope.