My husband had RP i. 4/2018, at 54. He was stage 3. He then had radiation (8 weeks) in 2018. His PSA was good for a few months 1/2019 his PSA started going up. In 3/2019- he was PSA 49. 5/2019 they started giving him Lupron monthly and zytega in the form of pills. He’s still on it. He’s very fatigued, low energy. He has shooting pains, uses a cane when out on uneven ground and incontinence. His BP goes up several times a day and he controls the BP with THC. Wants to discontinue treatment. He wants to have quality, and not so interested in quantity. We met with a surgeon in January 2020. He said He could remove the lymph nodes and more, giving him about one year of medication free time. He had many problems in his first surgery as he had internal bleeding, and blood clots . My husband doesn’t want to go back under the knife. So my question is, would you recommend we first talk about changing the meds... and to what meds? Or is stopping treatment the way to go. I just don’t know. The doctor has already told him if he discontinued treatment, it may not work if his PSA goes up again. Right now, the doc says, “He’s responding to treatment.” Would like some direction. Your thoughts?
Wants to end treatment : My husband had... - Advanced Prostate...
Wants to end treatment
If he is not castrate resistant, he could try going off Zytiga and see if just Lupron will keep his cancer from progressing. That might improve the fatigue problems.
If he is considered non-metastatic (that is metastases too small to see with a CT and T99 bone scan) there are other anti-androgens he could try if Lupron alone won't work for him (Apalutamide and Darolutamide).
There are also other treatments available such as Docetaxel chemotherapy, Xofigo and LU-177 (outside the US), but they all have side effects so not sure he would be up for that.
He’s not castrate resistant. He is non metastatic too.
I don't like the idea of switching ADT drugs if the one he on is still working. But if he is dead set about stopping, he could try casodex. It has less side effects.
He could also try a lower dose of Zytiga. It still may be effective and have less side effects.
My husband cut his dose in half with the doctors permission. It was a total game changer. Now he is up and doing stuff every day. With full dose it was like he was dying every day. Balance issues, so tired could not make it up the stairs. Shortness of breath. With half dose hardly nothing.
That’s wonderful and encouraging! Thanks for the info.
Can I ask what his PSA is currently? Also, has he done chemo and or any radiation? Especially for his pain.
His PSA is >0.09 . Something like that. It’s remained good while on the treatment.
Yes he had 8 weeks of radiation after the RP. As far as chemo, just the pills: Zytega
His BP fluctuations may indicate that he is not taking enough prednisone with his Zytiga. Discuss with his oncologist. They suggest 5 mg/day, but some may need more.
I really don't see what removing some lymph nodes gets him, other than the risk of more side effects (lymphoceles and lymphedema). It will lower his PSA, but that doesn't obviate the need for ADT:
prostatecancer.news/2020/07...
While fatigue is certainly a side effect of Zytiga, it is also a side effect of cancer. So if he stops treatment, it is not at all clear that he will feel fine. Two options he can discuss are:
(1) intermittent ADT - taking an ADT vacation
(2) BAT - available on a clinical trial only -instead of waiting for testosterone to rise naturally, which can take many months on an ADT vacation, they give him a high dose of testosterone for 3 months, You can read about this experimental therapy here:
prostatecancer.news/2016/09...
Thanks for the information and options. Will continue to research this
TA provided great summary. Regarding option 1 you should read
Integrating evolutionary dynamics into treatment of metastatic castrate-resistant prostate cancer nature.com/articles/s41467-...
Its about Abiraterone on/off
Abstract:
Abiraterone treats metastatic castrate-resistant prostate cancer by inhibiting CYP17A, an enzyme for testosterone auto-production. With standard dosing, evolution of resistance with treatment failure (radiographic progression) occurs at a median of ~16.5 months. We hypothesize time to progression (TTP) could be increased by integrating evolutionary dynamics into therapy. We developed an evolutionary game theory model using Lotka–Volterra equations with three competing cancer “species”: androgen dependent, androgen producing, and androgen independent. Simulations with standard abiraterone dosing demonstrate strong selection for androgen-independent cells and rapid treatment failure. Adaptive therapy, using patient-specific tumor dynamics to inform on/off treatment cycles, suppresses proliferation of androgen-independent cells and lowers cumulative drug dose. In a pilot clinical trial, 10 of 11 patients maintained stable oscillations of tumor burdens; median TTP is at least 27 months with reduced cumulative drug use of 47% of standard dosing. The outcomes show significant improvement over published studies and a contemporaneous population.
Rkoma
You might also consider to what extent he may or may not be just plain depressed about things. Oncologists are usually more than willing to refer patients to counseling professionals, particularly if they are having "symptoms" of psychological & emotional distress.
Before the COVID-19 days many men found benefits in seeking face-to-face mutual support in local/regional Prostate Cancer Support Groups. Some of them are now still having "virtual" meetings. Some can provide connections to local area support people who can talk about things by phone.
Getting a discouraged man out of his shell and into a brave new world of sharing many more feelings about his new reality than he may have ever shared before can sometimes be a tall order. In my experience, sharing lots of big "Lupron Hugs" seems to help.
Thank you for your kind words. I will take all this into consideration
Some of Lupron's side effects, including mental/emotional ones, can be related not just to low T levels but to LOWER ESTROGEN levels (that are a result of low T).
Even though it may be less effective against PC, bicalutamide (Casodex) was what I opted for, due to fewer side effects and better QoL. Estrogen levels actually increase. I take 150 mg, along with 10 mg tamoxifen and 5 mg finasteride. But do not expect this to work for many years on end (although in some cases, it can).
Another option, which is not yet an established standard of care in the US, is high-dose transdermal estrogen. It will be hard (but not impossible) to find a doc to prescribe this.
Also hard to find (outside of clinical trials) would be a doc willing to try the BAT or high-T therapy. This would no doubt improve QoL, but how the cancer responds is something of a crap shoot. It is a risk that I am personally willing to try, when the time may come.
All of these three options differ from standard ADT (Lupron, Zytiga) in that estrogen levels are maintained. Aside from the fourth option of just quitting the meds for awhile, there is also the option of LOW DOSE estrogen added to the current meds, with the hope that it can make some difference.
I will research all this. Thank you for the insight!
Thank you for being Walts _wife and advocating for him... I’ve read what others have said. Some good ideas? I Did Lupron and another drug similar to Zytiga for 18 months . I’m 3 years older than he is. I myself , went through three bad years of depression and bad thinking . We all understand not wanting to do treatments any further .. especially when hurdles keep appearing .. He is so very young . Too young to call it quits. I’m sympathetic to his position of not wanting surgery if he had issues with the RP.. I wasn’t a candidate for surgery so I don’t know how that feels ? It’s so common for a man to be told “ we got it all” then after oops .. He is not the only one in this. It makes me glad that I didn’t have an RP. It’s all so very frustrating until he get a clear report or some good news. I’m sorry he’s frustrated . I can relate .. It sounds to me like there are options yet open to him . But he must want to do this . Good luck 🍀
.
Thank you for your encouragement
I will talk to the doc about depression.
My first two years with pc I was depressed and yelling at my innocent bride for no reason at all. Then I’d feel suicidal. We went to a cancer shrink. He told us kalonapin for two weeks then lexipro for a month then we can talk. “ we tossed the scripts and never went back . I started Sam-e .. it helped my low energy and my moods. Not recommended for meat eaters though .Also I take the high thc oil twice daily . I wasn’t a regular user before pc but everyday since .. pc is a test of waiting for it to come back ... it is a bad psychological state to live in....We can only take a breath with good news. We’ve had men suicide for sure. Such a pain not to be described . Get him help or someone to talk to . Giving in and stopping treatments shouldn’t be an option right now. There is something to be done . It’s a battle. 🙏
Yes I can see all that with my husband I will encourage him to change treatment and not finish all together. He says he can’t trust himself to make decisions right now and has asked for me to help him figure this out. So he is open to suggestions
I would add to Whimpy-p remarks: Since these days isolate us all and reinforce the fierce "alone-ness" that PCa brings with its horrible but necessary treatments, I suggest getting Walt simply to read what's here on HealthUnlocked.
It is a terrific relief and terrible tragedy that we are not alone....if one has felt it, many of us have likely felt it. Unless you are talking supplements or alternative care 
! we are a supportive and savvy group! Good luck to you both, and thanks for looking out for Walt.
Good that he trust you and is opened minded. Many men are not . My wife has been my savior. She cared for me for two years of misery . We neede help putting shoes on and even getting up at one point. I’m happy to that he has you .❤️❤️😷
I am saddened to read your post. Some very helpful advice has been given by those more experienced then I and is worthy of implementation.
WELL BEFORE being diagnosed GL10 in 2015 at almost 65, I let it be known to my WIFE, kids and others that QUALITY OF LIFE and not quantity was PRIORITY ONE since without it I could not devote my awake time to my WIFE, my bicycling. (p.s. -- those who know me might think I have the preceding order reversed, including my WIFE, but it IS in that order) and other daily duties.
My chosen treatment from the beginning was designed to provide the GREATEST ACTIVITY QUOTIENT come hell and/or high water. UNLIKE most other men dealing with GL10, I began treatment with CASTRATION not ADT and agreed to be treated with CRYOABLATION plus a one time immunotherapy injection then begin BI-WEEKLY TESTOSTERONE INJECTIONS one month later. Since January 2016 I have had my biweekly injections that has resulted in an almost uninterrupted, very satisfying and ACTIVE life thus allowing me to provide the care and attention my WIFE is so deserving of. Could this choice shorten the time I have, very well could but my belief is that LIFE IS A ONE TERM GO-AROUND with nothing to follow.
Being kind and helpful to others, being truthful to myself then grab the bull by its horns and DANCE. By making the best of what is available, maintaining as high a level of humor regarding all things good and bad as possible and letting the things I can't do anything about simply flow like water does off a duck's back will get me through all and when that time becomes apparent chosen measures are in place.
Wishing the best for you and your husband.
I appreciate hearing your journey. It’s a hard one for sure. I’m hanging strong and encouraging my husband to hang strong as well. He is open to my help and asks that I speak to his OC as he feels overwhelmed. He has god says and bad.
Many of us take mood pills. I use thc like Walt . He might up that dose substantially to feel better ??
Yes, THC has been a help for him. It has given him a better outlook.
I have been a constant advocate regarding taking a PSMA PET/CT scan before any treatment decision, especially RT. Your husband's case with RT proves that right. Only 40-50% of recurrent after RP benefit from a salvage RT, if this is decided in a "shot in the dark" manner. It is not late at all though. Please have him take the most sensitive imaging test in the hope that the source of his disease is revealed and more accurately targeted treatment is followed. The most difficult part with this plan is finding a competent dr that can read it, comprehend it and adjust treatment accordingly vs taking it it as a "novelty" or "peculiarity", putting it aside and continuing practicing what he/she has been doing since graduating from the medical school. The acid test for this is simple: Suggest it and if his/hers reaction is in the lines of: "Is expensive/not covered by insurance, doesn't have good sensitivity, gives false positives, is not going to change your treatment plan" etc, dump him/her and head for the next one.
Read Tango65's post here:
healthunlocked.com/advanced....
Good insight , I will talk to the doc about this as well. Thank you
I hear your husband on the fatigue! I hate it! He may want to try Adderall. I take 2.5 mg to 5 mg only when I needed and it helps. He also needs to fight the fatigue and exercise. This is so important.
I went off all treatments for one year and it was the best year of my life! However that was a personal choice that I did to travel the world and to climb Mt Kilimanjaro. I was in recession for about 6 months before my PSA’s climbed and 11 months before a bunch of tumors could be seen again. Mind you I was stage 4 so in the end it doesn’t really matter for me. Your husband may be better off staying in treatment for now.
The surgeons recommendation of taking out the lymph nodes is the most ludicrous thing I have ever heard. There is zero benefit to doing this! He probably has cancer cells in many more lymph nodes that those that look large on scans.
Good luck to your warrior!
Thanks for the encouragement! I will see what the doc says. My husband is open to suggestions.
Kilamanjaro? Right on!
To be honest it has to be your hubbies choice if he wants quality then spend whatever time he has doing the things you both want to do i lost my Steve to this horrible disease in January last year and everday i wish he was here but not the way he was after the disease won from the day he was diagnosed we spent at much time as we could doing things seeing family etc i was fortunate to have him for nearly 4 years after diagnosis but once he had the chemo it all went down hill very quickly he got sepsis and the last 6 months were horrendous but the memories of the times we had got us all through.
As i say only he has to make his own choice obviously you as well not an easy one we made our choice and i wish he had never had the chemo the tablets etc
Good luck in your choice i will be thinking of you both xx
Thank you for your wisdom and kindness. I am really trying to give him the space he needs to get through this. He is open to suggestions and I’ll suggest that they reduce the Zytega. This may help. Also, may try to change doctors. As that is one more frustration he deals with- not being heard.
Is your husband able to take early retirement? The ADT causes fatigue with me too. I was fortunate that I paid into a disability insurance plan so I was able to retire with a disability pension after diagnosis at age 55. It is less money than when I was working but I can live on it. The disappearance of my work stress and the ability to lay down whenever I feel fatigued has made a huge difference in my life. I thought I would miss my career but, two years after I retired, I don't miss it at all.
Yes, he’s been able to retire December 31, 2019. It was a huge relief for him to not deal with stress. I work and his parents left him some money. We will explore disability if at all possible
I am sorry this has been so difficult for you both. I have read through some of the posts here and Tall Allen makes some good points.
I would just add a couple of thoughts. First, might it be worth seeking a second opinion on what's happening and other possible treatment options from another prostate cancer oncologist? A second opinion might get your husband interested again to see someone new and well regarded in this field.
Your husband is young and sometimes when the Gleason score is high (8-10) and the patient is younger, the disease can be more aggressive. What was his Gleason score?
There seems to be a multitude of issues he is dealing with and it is important to figure out their cause(s) is before deciding to stop or start a treatment. As Tall Allen said, it may be a progression of the disease and it would be good to find out if that's true and if so, how far it has progressed. Again, this makes me think that finding a good research medical center that a has a specialty in prostate cancer treatment and research for a second opinion could be a good idea.
Right now (and always), knowing what's happening and treatment options are paramount. I hope you can figure it out with your husband. The lack of hope and discomfort can take away one's will to fight and he may just need a "reboot" in care options, if that's feasible.
Good luck!
Thanks I like your ideas. We’ll consider them. We live in CA, but we are actually in a rural area and not Urban. We drove an hour just for his doc. It would be about a 3 hour drive to LA, but I will ask about changing doctors. Thanks for your insight.
He definitely should seek a 2nd opinion..the question is..from whom? Really, someone who devotes a majority of his/her time to this disease! Centers of Excellence are the typical suggestions.....but that is not always feasible. If not for you, one of the COEs may provide a referral to a fine Doc not affiliated with a COE. Find out about the background of of oncology Docs at any relatively nearby medical schools. Makes one think our medical system neeeds a big restructuring?? So many patients feeling they need to do the same work to find to doctors in a given field. Your husband is lucky to have you.....imagine if he didn't!!!
Is his PSA still low? Other anti-androgens may work, like enzalutamide or apalutamide. Also, there is some recent research that chemotherapy (like docetaxel) before switching to a second anti-androgen may be a better order of treatment for some patients. Also, even if the PSA is still low, there are some patients who have increase in disease that PSA does not show. I don't know what your husband's details are, but those are some things to ask the oncologist.
In terms of his pain and discomfort, ask if there is a home palliative care service available. Palliative care is not only hospice. They can sometimes help people manage symptoms even while active cancer treatment is continuing.
Thank you for your ideas. Well look into that
There are so many technical guys on here....and they give such excellent guidance. Just wanted to know I’m also a wife advocating for my husband who was on lupron for 8 years before he became castration resistant. He was put on zytiga and had many side effects. We went through a similar frustration of what to do.....this site helped me so much when my husband just couldn’t navigate all the information. I will private message you but we did end up taking a zytiga vacation to see if all the side effects were due to that or the cancer. We also switched doctors....finding one who understood the significance of the side effects. These drugs are effective but they affect men differently.
I appreciate your insight thank you
Someone here mentioned high-dose transdermal estradiol (tE2), which is the standard of care in the UK, but it's not FDA approved, so don't expect US doctors to promote it. It is believed that most of the SEs of ADT derive from low E, rather than low T. tE2 lowers T while maintaining E, thus it's as effective as the LHRH agonists/antagonists without causing all the misery.
Again, you'll need to ask for it.
Good to know thanks
Hi, yes my husband had RP in April of 2018. He had RT in August/September of 2018. This was targeted.. he is open to suggestions . He has good days and bad. I will make these phone calls. Family history is a definitely part of this. His father died of PC when he was 58. My husband is 56. My husbands brother had PC and RP and RT. But his cancer was only in prostate and has not spread. Thanks for the insight.
I have no idea which he uses, but I’ll ask.
TA's advice is excellent, but thought it might be helpful to hear of my own experience.
When my prednisone dosage was reduced to only 25 % of original prescription I had trouble walking more than 6 or 7 minutes and needed walking sticks to get around.
(I switched from 1000 mg zytiga in fasted state to 250 mg zytiga w/ a healthy lunch. My prednisone dose was reduced down to 25 %, but it should have remained at 100 % as the amount of zytiga getting into bloodstream was the same or perhaps even more with new approach to taking it. When on 100 % of prednisone could walk 50 - 60 minutes a day, but soon reduced to 1/10 th that on the 25 % dosage. Walking was fatiguing and painful. Now take 5 mg/day which is 50 % of original prednisone dosage and walking is almost back to normal and tolerable joint pain. The increase in prednisone felt like a miracle cure...)
RP in July 2018, then firmagon and radiation, then zytiga + prednisone. It's 2 years and 1 week since RP and still LT 0.1 psa = undectable by standard test.
It took 1 yr and 9 months to regain continence - a physical therapist helped (my kegels were not the best out of the box), but it was still a long process.
That’s good information thank you. This group is a wealth of knowledge! 😀
Thanks for the criticism....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 07/20/2020 9:04 PM DST
Did you run out of your chill pills?
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 07/20/2020 11:28 PM DST
Calm down and..... stay well....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 07/21/2020 11:07 AM DST
I think we should stop communicating with each other.... my wife is starting to get suspicious...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 07/21/2020 6:45 PM DST
I think we should continue our relationship in private instead of taking up valuable time and space out here "in the open". Do you agree? I will send you a "Hello" message in private to get us started.....See ya...
.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 07/21/2020 9:08 PM DST
My dad (66 yr) started Abiraterone 3 weeks ago. After feeling extremely fatigued for the first 2 weeks, he more than doubled his daily water intake. Since then there has been huge improvement in his energy level and how he is feeling overall. The only downside being that he has to take a leak every 90 mins or so.
May be this will help your husband too.
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