Life Expectancy When ADT/Abiraterone stops working?

[ronton2]

I have been treated with ADT/Zytiga for 2 1/2 years. (I have posted a summary on line of my disease history.) My PSA remains undetectable but my MO says I should expect a different result in the coming months. What follows next? Reasons to be optimistic? My last full body scan showed two spots of abnormality in the pelvic region.

[LearnAll]

Your M O seems like a fortune teller or astrologer...How can he predict your future ?

The fact is your PSA is undetectable which means your cancer cells have died or are deathly sick. Are you seeing more abnormal lesions on your scans ? If that's the case, he might turn out to be right....if not then, you are going to be fine. Good Luck.

[ronton2 in reply to LearnAll]

Learn All, I am very happy to be undetectable but my MO makes me nervous. He is quite bombastic and told me at my last consultation/Lupron injection that I might "have five more years." I asked: Do you mean on ADT/Zytiga? He said: "That includes other treatments." I quess I will just toughen my skin. So glad to be a member of HealthUnlocked. My sanity, at times, depends on it. Thanks for your words of encouragement.

[ronton2 in reply to ronton2]

Let me add: I have no new lesions.

[LearnAll in reply to ronton2]

The way the research going on in other parts of world about metabolic pathway inhibitions and other type of treatments...you might get 10 to 15 years,,,or more. New break thrus are happening at faster rate than ever before in cancer field.

Don't listen to doomsday sayers ...do the right things.. eat anti inflammatory foods.

exercise/walk every day and do relaxation/meditation daily. Wish you all the best.

[ronton2 in reply to LearnAll]

Thanks for the encouragement, LearnAll. I agree that we are seeing more positive news now with regard to prostate cancer treatments. I guess I need to take a long walk and get clear of negativity.

[kapakahi in reply to ronton2]

That's outrageous. No doctor should pontificate like that. It frightens and depresses people, and that's the last thing they need. And he has no basis for forecasting such a thing - you're a person, not a frickin' statistic, what's true for the stats may not be true for you, he's not treating statistics, he's treating YOU, and he's got tolearn this. Or at least keep his ignorant trap shut. I'd find a new MO who projects hope and will and determination and whose focus is on YOU, not statistics and certainly not his own ego. (sorry for the rant but these doctors drive me crazy, and they're so damn destructive!)

[ronton2 in reply to kapakahi]

kapakahi, I have been thinking much the same for the last year. I am not sure he means to project such arrogance but it makes me uneasy. Since the day I first met him he has been bombastic and off-putting. I am considering a change. But first I want to express my concerns directly to him.

[Hirsch in reply to ronton2]

Agree. Go on to someone else.

[pbaldwin in reply to kapakahi]

So true about some doctors. That's why I left my urologist. I don't need to be treated like a number.

[Jscjac in reply to ronton2]

I think I would have to get a new oncologist. That’s just me.

[ronton2 in reply to Jscjac]

I am surely thinking about it.

[Professorgary in reply to ronton2]

Wow what a difference from your doctor to mine. When we first met he saw I was diagnosed 23 years ago and his comment was “wow, 23 years, that’s a heck of a run, now lets add another 15 to that.”

[GP24]

2 1/2 years could be expected if you were castrate resistant. Since you are hormone-sensitive I expect this combination will work three times that long and maybe longer.

[ronton2 in reply to GP24]

GP24, I take encouragement from your words. I am still hormone-sensitive. Guess I will listen to my inner voice and words from you and other prostate cancer survivors.

[Hidden]

I just met with my doctor today and discussed this exact topic. I currently have a PSA of .01 on Zytiga for 16 months and he said there is no reason to not expect that to continue. I know he has some patients that have been on Zytiga for several years (he said the longest was 6). I asked him about those patients PSA levels and while a small number stay undetectable, he said some go up and down slightly over time. He has one patient that stayed undetectable for years and has now risen to .03. He also said the chances of progression at such a low PSA of .01 or undetectable is very, very low.

So there is no good reason why you should not be optimistic and to expect your great response to continue.

I remember talking to my doctor about worrying every time I get blood tests: what if they are bad? He said, "we'll deal with it if it happens" In the meantime, concentrate on enjoying the great gift we all have called life.

[ronton2 in reply to Hidden]

gregg57, I would love to have your MO. My oncologist is bombastic. I often leave wondering if I should ask for a second opinion from another professional in the field. But I will, instead, keep asking questions on this site and getting wise counsel. Thanks, gregg57. Let's keep in touch. I need to live in the moment--as I try to do--and stop predicting the future.

[Hirsch in reply to Hidden]

Sounds like you have a great doctor

[Hidden in reply to Hirsch]

Yes, he is a great doctor.

I remember when I was starting to become castrate resistant and my PSA was rising. It was 12 and I was starting to get nervous. But when I received my next blood test 5 weeks later, it was 26. I saw that and I panicked. The same day I got those results, my doctor called me at home. He had already looked at the blood tests results and told me we needed to start Zytiga right away. It was Monday and I had a previously scheduled appointment with him for Wednesday. He told me he would have the prescription ready when I came in and he scheduled the pharmacist to come in that day to explain everything to me. While I was in the chair getting my Zometa infusion, the pharmacist came over with the prescription and explained everything. I left with my first batch of Zytiga.

Another time. I was at an appointment and mentioned that I was having a lot of anxiety every time I got my blood tests. He said, "We have someome here in the department that can help you with that." While I was getting my Zometa infusion, a man came over and introduced himself. He was the therapist. We set up an appointment before I left the building. The appointments I had with him were so helpful.

[ronton2 in reply to Hidden]

gregg57, how well did you tolerate the infusions?

[Hidden in reply to ronton2]

I have had no side effcts at all from them so far. I've had them every 3 months for around 1 -1/2 years now.

[Magnus1964]

If your PSA is still undetectable then I would assume zytiga is still working. Why are you looking for something else?

[ronton2 in reply to Magnus1964]

Magnus1964, I am not looking for a change. I guess I just needed hear from others today after the last visit with my oncologist. He seems surprised by my PSA scores and second guesses outcomes. I will learn to keep my ears on alert and maintain a positive outlook. Thanks for replying.

[Hidden in reply to ronton2]

What PSA scores is he surprised about?

[ronton2 in reply to Hidden]

My undetectable scores for the past two 1/2 years. He seems surprised by the fact that I am still responding well to ADT/Zytiga.

[Hidden in reply to ronton2]

I guess it's surpising if you've never seen it, but it does happen. 2-1/2 years is quite a bit more than the median, but not unheard of. My doctor has a lot of patients (just the patients currently on Zytiga are around 24). Several of his patients have gone that long and some even longer. When he first saw my PSA drop he said he thought at least 2 years for me, but of course no guarantee. I've gotten 16 months so far with a current PSA of .01. I asked him what the longest was and he said 6 years! So hopefully you have at least 3-1/2 more years to go!!!

[ronton2 in reply to Hidden]

I'll take that answer. Thanks, gregg57

[Hidden in reply to ronton2]

It's better to be optimistic because that improves your quality of life. The fact that a disappointment might happen sometime in the future is not a good reason be pessimistic. Deal with things when they come, not before.

[tom67inMA in reply to Hidden]

Well said Gregg! I'd also like to point out that the "survival" curves for most treatments drop quickly in the beginning and then flatten out with time. That means that for each month a treatment works, the probably that it will continue to work for another month increases.

This is directly opposite the survival curve for life overall, which starts really flat, goes down gradually in middle age, and practically falls off a cliff somewhere around 80 or 90 years of age. I've yet to see such a cliff in any cancer treatment.

[Hidden in reply to tom67inMA]

Thanks. What it comes down to for me is: This moment in time is the only one you can live in. What I've learned is the best way to extend your life is to live in the present tense.

[ronton2 in reply to Hidden]

You are spot on. I try to live in the moment but the "moments" spent in my MO's office are still disquieting.

[ronton2 in reply to tom67inMA]

tom67inMA, That does seem counterintuitive but it does reflect patient response to treatments of this type. Boy, have I got more to learn!

[ronton2 in reply to ronton2]

Yes!

[npaulson1]

I started lupron/Zytiga in mid-2017 as well, when the Stampede results came in. My MO noted recently that at last summer's big meeting of prostate wizards, it was noted that no median has yet been established for that regimen -- people keep on living, if they tolerate the therapy. (The median is where as many people die before it as die after it.)

[Patrick-Turner]

If your scans are showing mets in pelvic region and Psa is undetectable, you need the best doctors you can find because its possible some of your Pca has mutated and does not make Pca, or you have some other problem.

Most Pca treatments suit most men's Pca, but a minority of men get Pca that does not respond to the usual treatments. If you are worried, chase it up further to find out what you have. It could be something other than Pca, and you need to know if its benign or malignant so would not a biopsy be done to find out?

Patrick Turner.

[ronton2 in reply to Patrick-Turner]

Thanks, Patrick-Turner. I will consult with my MO but benefit so much from all the responses given by HUnlocked members. My MO has said that no prostate cancer patient has the same pathology.

[Patrick-Turner in reply to ronton2]

Indeed,

Patrick Turner.

[leo2634]

21 months on Zytiga still 0.1 hang in there. I would ask your doctor about Provenge infusions they are a great weapon in our arsenal while PSA is at its lowest. Never give up never surrender. Leo

[ronton2 in reply to leo2634]

Thanks, Leo. Again, MO has not mentioned Provenge as an early benefit to my current situtation.

[leo2634 in reply to ronton2]

Ask him at you next visit also Medicare covered it if you are on it. My advantage Aetna plan also.

[ronton2 in reply to leo2634]

Thanks, leo2634, I will. I am taking notes now.

[Costarica1961]

Were almost twins. I just got a 1year and a half out of zytiga and recently seen one possibly two spots but one glowing ugly one for sure. I am getting SBRT TO LESION and switch to xtandi. Yes I am concerned although there is hope for more life. More treatments and hopefully more too come. Hang tough

[MateoBeach]

Patrick Turner is correct. The big question is: what about the two nodes in the pelvis. If they are outside of the field of your previous salvage RT and they are indeed PC nodal mets, then they should be reviewed by the radiation oncologist, preferably at the same facility that provided your salvage RT. They will have the scans with the exact fields treated. They may be able to target those nodes and the pelvic lymph node regions at risk. Or biopsy of one could be valuable if accessible.

[ronton2 in reply to MateoBeach]

MateoBeach, I plan to discuss this with my MO soon. He has been rather evasive about next treatments, salvage radiation. I have not had previous salvage, only the 25 days and brachy seeds. Thanks

[MateoBeach in reply to ronton2]

Tell your MO that you want a consultation with the Radiation oncologist. They are the one to advise you in this regard.

[ronton2 in reply to MateoBeach]

MateoB, I will do so. I need to be more proactive with my MO, at the least getting more answers to questions. Thanks

[tomtom9148]

Think about getting a new oncologist. My first oncologist told me that “this disease will take you home“. At that point I was unsure about him and when I couldn’t get my pet scan results within two weeks I called a different office. The nurse there got me the results right away and she was very positive. So, I decided to switch on colleges and have never looked back. The doomsday ones are ridiculous. I just switched from Xtandi to Zytiga after 2 years because of fatigue and memory loss and so far, so good. My PSA is at 1.40, but my newest MO (old one moved) says not to worry, take it one day at a time. Diagnosed May of 2016 with PSA 16, Gleason 4/5, Met to 3 bones.

[GoBucks in reply to tomtom9148]

I agree. You need a new MO.

[ronton2 in reply to tomtom9148]

tomtom9148, I have thought recently of requesting a new MO; I am at SCCA (Seattle) and know of several others who get high marks for their "bedside manner." Thanks

[ronton2 in reply to tomtom9148]

Many have urged me to do so, tomtom9148. It is on my list. Thanks

[VictoryPC]

Intermittent ADT is the key to living longer. Once CRPC sets in, you get a time limit especially after 18 months of Lupron.

[ronton2 in reply to VictoryPC]

VictoryPC, Thanks. My MO is adamant that intermittent is the wrong course. Can he be budged? New MO for me?

[VictoryPC in reply to ronton2]

If I would have listened to that 9 years ago I would be dead now. They gave me 6 months of Lupron and I refused any more. That is why I respond to it all right now. My PSA was in the 50's and now stabilized under 4ng. Educate yourself. You can do it like I did.

[AlmostnoHope in reply to VictoryPC]

So true. PCSPES and Bica off and on. Saved my life.

[CRPCMan in reply to VictoryPC]

So , so TRUE...

[ronton2 in reply to VictoryPC]

Amazing, VictoryPC. I seem to lack the courage to take that step. The future will tell.

[VictoryPC in reply to ronton2]

You really can do it. I mustered it up and proved it to 4 of my oncologists and to this day they respect me for challenging them. Most if them told me they use what they were taught as well as only the tools available to them.

[VictoryPC in reply to ronton2]

Educate yourself and you can do it. I never thought it possible as well until I proved it to myself.

[ronton2 in reply to VictoryPC]

I recently bought a copy of "The Stages of Prostate Cancer." It breaks down one's status into chapters that are variations on the color blue. I am an Indigo, someone who has had chemical failure. It's more encouraging that some of the "facts" I have heard so far.

[jackwfrench in reply to VictoryPC]

Hello, as a post RP BCR peaking at PSA 2.2, my Hopkins MO has just put me on Lupron/Casodex soon to phase to Lupron/Zytiga “for as long as we get results” -any advice on how to build an intermittent position? I likely will change MOs.

[CRPCMan in reply to ronton2]

Listen to these guys. Don't develop CRPC like I did, Then the real fight begins.

[jfoesq in reply to VictoryPC]

Were you dx with Mets?

[ronton2 in reply to jfoesq]

One in my pelvic area

[Mommy_62 in reply to VictoryPC]

what did you do for your?need help

[scarlino]

Always be optimistic. Forget about your “shelf life”. Only God knows that. Every day you are alive is the potential for seeing a new treatment.

[ronton2 in reply to scarlino]

Good advice, scarlino. We can't read the future! But we do worry. Ouch.

[scarlino in reply to ronton2]

Yes, it’s very hard not to, but fixating on worry is not healthy. When caught in the worry loop I recognize it and push it away. You wind up in the same place after all the worry. Be blessed!

[ronton2 in reply to scarlino]

Agreed!

[j-o-h-n]

ronton go out and have some wonton soup and relax. Then give some thought about bombing the bombastic MO.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/14/2019 5:53 PM EST

[ronton2 in reply to j-o-h-n]

j-o-h-n, I will give that some consideration. Thanks

[MJCA]

Hey last year my PSA quintupled in 6 months or so. Lupron and Casodex had lost their efficacy. I am on Erleada/Apalutamide and it knocked my PSA from 13.5 to 3.5 in 6 weeks.

I asked my MO what the future holds. He told me I am now incurable. I will be on Lupron/Erleada/Xgeva the rest of my life until either (1) my body rejects this treatment and my PSA begins to rise and/or (2) when it metastasizes. I am told that on Erleada the median was an additional 40 months before either event takes place.

Between PC and experiencing a hemorrhagic stroke 2 years ago, I am just trying to enjoy life. You may wish to look into adding either Erleada or Nubeqa to your treatment regimen.

[ronton2 in reply to MJCA]

MJCA, I am taking notes from your reply. Thanks so much. Good side effects with Erleada?

[alsam]

I was diagnosed with APCa in Jan 2012, with a presenting PSA of 509 ng/ml and a Gleason Score of 4+3. Fortunately in Mar 2012, I was able to get on to a UK drug trials program (Stampede-Abiraterone/Prostap) and over a six month period I watched as my PSA reduced to less than 0.1 ng/ml...January 2020 will be 8 years since diagnosis and I remain on the same treatment with no PSA increase and remain totally optimistic....

I hope that opens your eyes to the infinite possibilities ahead....

[ronton2 in reply to alsam]

alsam, I truly hope to follow in your footsteps. I, too, was graded 4+3. I am striving to live each day fully but do get a bit anxious prior to my next Lupron injection. ADT + Zytiga has proven to be a strong bullet in our fight. Thanks for the words of encouragement; we all need to hear more of that.

[alsam in reply to ronton2]

Thanks..How have you got on with ADT/ Zytiga? Like you I get anxious nearing my PSA testing...then the results arrive and it's favourable and the process starts all over again...For me this is one of the hardest things to go through..All the best to you and yours...

[ronton2 in reply to alsam]

alsam, Agreed on the days just before the next Lupron shot and PSA reading. I am trying to get a handle on that anxiety. I am just thankful that I tolerate the side effects, except, of course, for the loss of sexual appetite. Oh, well, I am just lucky to be a solid relationship. I will keep in touch. Perhaps we can discover a magic pill to relieve symptoms of pre-shot anxiety. Be well!

[alsam]

Hello,

Hows your treatment going..its now 6mths since your last communication..how have you managed? Magic Pill for pre-shot anxiety is the comradery we have on sites such as this..

Take Care.