At the suggestion from Darryl, I have now joined this community. I have been part of a smaller group for Gay Men with PCA
First diagnosed 2005, age 45, Gleason 7, stage IV.
Treatment: Lupron 2 years, brachytherapy, 36 sessions of radiation.
Over the years as my PSA elevated I would be placed on Lupron for 1 year. I believe I have been on Lupron 6 out of 13 years.
Now, my situation has changed. My PSA is elevating very quickly, 2.3 to 13.4 in 6 months. I am now anti-androgen resistant. There is no evidence of metastis.
I am now seeing a radiation oncologist at Stanford. He wants to keep me on Lupron and put me on a new drug Erleada. I have read the data on this drug and the side effects. The drug's claim is to delay metastasis for an additional 24 months. Control group metastasis on average 16 months on Erleada 40 months.
I'm not a quitter, but looking at the data makes me wonder. What is the point of taking this med to only prolong the inevitable? I will be 59 next month, longevity runs in my family. I could literally be a cancer patient for another 30 years.
I am tired of doctors, tests and pharmaceuticals along with their side effects. Realistically I cannot envision myself as a cancer patient for the next 30 years.
I have no significant other, children or siblings.
I love life and enjoy it. I do not have a death wish. I just don't know if I can keep doing cancer treatments any longer. I am considering ceasing all treatment. It appears to me all treatments are there to extend one's life all still leading to metastatic cancer.
I would appreciate any input or pearls of wisdom anyone can share. Am I crazy? I hope not. I would rather have a high quality of life (even if shorter) than to be miserable under constant treatments.
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MJCA
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I don't even believe the drugs extend overall survival. The studies always claim prevented metastasis for an additional 6 months but that is not the same as overall survival. IMO had you not gone on Lupron you would not now be castrate resistant. The drugs control cancer for awhile but the end result is a much more aggressive case of PCa. If I were you I would look into immunotherapy...that is what I plan on doing.
Don’t ever give up the amazing chance you have to continue with life. I get it’s been tiresome.
But what we (my hubby) wouldn’t have given to have had this opportunity you have been given.
Love life. Embrace the opportunity you have to extend it. You’re not that far in it. Just been a long ride I can see. Don’t give in as you never know what may be around the next corner.
Hugs to you, may not be the “advice” you’re asking for but wanted to throw in my two cents. Best wishes to you in your journey.
You've been at it 13 years... You are a warrior....it wears you down I am sure...heck, I am worn down after a few months dealing with the reality of this, but seeing the sunrise...doing a fun activity...taking a trip somewhere interesting.....I hope you have friends or family who care about you... get counseling before you give up....it may be available at where you get treated or the American Cancer Society provides that service I believe...You've joined this forum and you are not alone....many knowledgeable people have posted alternative treatments/ supplements that you may avail yourself with for treatment/ help...
What makes you think that with rapidly increasing PSA you'll be able to survive 30 years? More realistically, you might have something like 7 years with Erleada, 5 years without it. So you might be increasing survival by about 40% by taking it.
Thanks Allen. I needed a good slap in my face. No one has thrown numbers like that at me, i.e. 5-7 years. That does dramatically change my thinking. Wow I am speechless. I have read about the side effects to Erleada. Have you taken it?
Thank you again you really placed things in perspective. Life is precious. Thinking 30 years where realistically it is less than 25% of that time. I am trying to get my mind around this.
A median means that half do better than that number, half do worse. There are outliers on either side - the median is the best guess. The increase in median metastasis-free survival for non-mCRPC was 21.9 months for Xtandi, so it was very similar. I expect Darolutamide will be similar as well.
Death by prostate cancer is no walk in the park. My instruction to my oncologist is her job is to ensure I die of something else. Old age would be good but there are many ways to die more pleasant than the prolonged pain of end stage PCa where intense medical intervention is compulsory and the option of going down to the beach and pulling a wave over one's head is no longer a physical option. All treatments at our stage are effective for a few years before it becomes resistant. Some treatments go cross resistant. We have to play the long game and sequence things as optimal as possible. From your history I note that although you may be castrate resistant to Lupron, you are not resistant to anti-androgens. You haven't been exposed to them and Erleada (apalutamide) will be the first. There are quite a number of these androgen blockers. Lupron works by minimizing testosterone in the blood. Androgen blockers do not intrinsically alter blood testosterone but they block the testosterone receptors on the cancer cells. You need an oncologist who specializes in "the dance of the androgens" as my onc says. I think you have many options at your stage, all with their own side effects and risks and you need to gather as many solid recommendations as you can. For me, I would question whether Erleada was the best starting point for that "dance". There might be others with a more tolerable side effect profile. That is just one line or modality of treatment. We have the chemotherapeutic line and the immunotherapy line as well. So, no shortage of options. Key is, get the best advice you can. Since joining this particular mob of PCa recalcitrants I have learnt an order of magnitude more than I gleaned from 18 years of continuing engagement with the medical complex.
Well said, kaptank. I finished 2018 on a sour note with my usual 3 month visit on 12/31 to the Mayo in Jax for labs, oncologist visit, and 6 month shot of Lupron. After over 3 years of undetectable PSA and testosterone, and being asymptotic, I had become blissfully complacent that that this blessing would continue on indefinitely. Instead, I got the cold bitch slap of reality when, for the first time, my PSA crept up to 0.12. Not high, I know, but an indicator that the cancer is starting to show resistance to ADT. My MO set me up for a PET scan on 2/5 to see if there is any new tumor activity, then see where we go from here. Happy New Year!
I assume you’re considering the ga68 PSMA tracer or the axumin tracer? The latter is widely available and FDA approved and Medicare pays for its 80%. The former is not yet FDA approved and not widely available. I had mine at UCSF ( across the country for me) and Medicare pays for the scan but not the tracer which was $875. But I haven’t been billed yet so who knows? Ask your MO which radio tracer he’s thinking about as there are older ones which are much less accurate.
I think we’re going to do the standard NaF scan first. We discussed the Axumin scan which the Jax Mayo does, and which Medicare and Blue Cross will cover.
We also talked about the new Choline-C11 contrast. They have a brand new hematology -oncology building at the Jax Mayo. They have the equipment there, but don’t have trained personnel on it in Jax yet. Apparently it has a half life of only 20 minutes, and I would have to go to Rochester, MN to have it done. It was developed by Dr. Eugene Kwon at the Rochester Mayo. My MO, Dr. Tan suggested I do the other PET scan first. If necessary, we’ll do either the Axumin or C11 scan later. I’ll discuss it with him on 2/5. Hate to waste time and money.
Developing new painful symptoms, or rapidly rising PSAs, or evidence of disease progression on various scans can be a big shock and demoralizer... been there, done that. When I was 65 years old in late 2013, I developed severe back and abdominal pain. My NM Bone Scan lighted up like a Christmas Tree all over my pelvic bones, many spinal bones, and several ribs. My CT Scans showed numerous enlarged lymph nodes. I had very advanced "incurable", Stage IV prostate cancer from the outset. PSA was a ridiculous 5,006.
I went straight to systemic treatments with Oncologist(s) and have been on Lupron ever since, along with a bone agent (happens to be Zometa, but could have been Xgeva). Initial treatment took my PSA back down to 1.0, but it was always understood that it was only temporary. My (heterosexual female) spouse and I went through a lot of existential anxiety, especially during the first couple of years. We found a local psychologically-oriented Cancer Support Group of other advanced cancer patients and their caregivers to be pretty helpful. I also found some support in some area Prostate Cancer Support Groups (although most of them had far earlier stages of disease progression, on average).
We had already scaled back a lot of our more - shall I say "aerobic" - sex life during the previous few years, after my spouse had gone through menopause. But, still, the bodily changes that come with Androgen Deprivation Therapy are a definite reality. Some of the side effects get to be a drag, too, as you already know from your own history with Lupron.
After a couple of years, my PSA took about another year to go back up as high as 95.0, while I did some more consulting (at UCSF), tried some Provenge, and eventually started Xtandi (enzalutamide) a little over two years ago. PSA went down again to as low as 1.2, and has been around 2.2 fairly recently, after a humbling 5 years and 2 months of overall survival. (I have locally known several men who were diagnosed around the same time with advanced PCa and who have already died of their disease or complications.)
Has all the medical "stuff" and appointments and uncertainty and worry and needle sticks and side effects and tons of other stuff been hard to live with with relative calm and grace? You betcha. There is real emotional and spiritual pain and suffering sometimes. But, for me/us, it has not been "all" the time. There have been good things and moments of re-prioritization and clarity and gratitude and forgiveness and acceptance that have happened, too. There is more than the necessary dealing with the sadness and loss of capabilities and former roles in life. I may never be Cured of my disease, but I can often be Healed in many ways along the way.
Yes, at one time it was both of Aerobic exercise intensity and sometimes Acrobatic as well. We were younger then, of course. Ha. Ha. In the several years before my initial diagnosis and Lupron, we had already transitioned more toward a "hands on" approach of "outercourse" rather than intercourse. After all, 90% of sex is between the ears, or so they say. Our bonded love and affection and small acts of touching and physical intimacy are as strong as ever. Only the libidos have changed.
Yes, when at the PCa diagnosis, no cure at the moment, but please tell me what are you seeking?
What is it you want to hear? I'm lost like all of us, but my world keeps me fighting to live. I've spent some time with kidney dialysis patients, most are diabetic as well, we do not have it that bad, they have chronic disease, but we're terminal, go figure.
So, please fight with us, we are are all noble warriors...
I haven't had to deal with this disease as long as you but like you I was diagnosed in my forties. Yeah brother we have been robbed of a lot and there is not a lot of pretty pictures to be painted. I am consumed by thoughts all the time about cancer and the treatments which are a disease in itself. It gets old at only 3 years into it. I'm 49 now and actually doing well with it, but for how long and it's living constantly with my guard up. It's everything from what I eat to feeling nervous if I get an ache somewhere. Financially draining and lothe the effects of HT and treatment. I read the posts on here and there is a lot of positive but many are a slap in the face of reality too. It's not only death I'm trying to dodge it's more the fear of losing everything I live for now while still alive. I have made up my mind that if I am to a point where I am living on only cancer's terms I'm okay with dying.
If you didn't care you wouldn't be seeking advice and looking for positives. It's okay to get down, you and all of us here are going through a lot. Things can turn fast my friend and that is not only a turn for the worse. Sometimes for the better too. We don't know what's around the next corner. Your still standing, sounds like your still sharp and cancer doesn't have complete control. Sounds like life is still worth living.
You have done better than most stage IV men to have survived 13 years without mets. Perhaps you would do better than the 24 months in the SPARTAN trial. As you probably know, there was no treatment 13 years ago that offered much hope to CRPC cases. Xtandi, in the PROSPER trial, showed similar results (22 months). Averages & medians describe the group experience - they don't say much about the individuals in the group. I think that there are things one can do to get a better spot on the bell curve.
If I survive until March, it will be 15 years since the failed surgery (followed by salvage radiation). I had a solitary spinal met treated 4 years ago. Somehow, life goes on.
Because the options were so dismal 14 years ago, I studied the PCa literature on PubMed & used what I found in a way that I think has made a difference. Having come to the point where you now have CRPC & a fast PSA doubling time, you might think that the end of the road is in sight, but you shouldn't look at it that way. We all get bouts of despondency, but they tend to pass.
I have a number of old posts on improving ones odds.
"Stage IV cancers have already spread to nearby areas such as the bladder or rectum (T4), to nearby lymph nodes, or to distant organs such as the bones. A small portion of T4 cancers may be curable using some of the same treatments for stage III cancers. Most stage IV cancers can’t be cured, but are treatable."
I'm going to start with a definitive answer to your last question, "Am I crazy?" The answer is No! You're experiencing tiredness and depression brought on by years of disease and treatment. The bad side of this is that the disease is currently incurable. But there's a hopeful side too and that is that the tiredness and depression are curable - and they are worth curing!
What I think you should do is concentrate on developing the things that make you feel good. They're partly the same and partly different for every person. One thing that's the same for all of us is exercise. It makes a big difference for everyone but especially so in the life of a person on androgen deprivation - regardless of whether it's Lupron or Erleada. Exercise will give you more energy and more ability to take an interest in life.
Another thing that I think helps everyone is human contact. You may have old friends or family members that you haven't talked to in a long time. You may be able to meet new people by joining a book group or some other group of people who share your interests. Try reaching out to them. If it doesn't work for you, okay, maybe try someone else. If meeting people is difficult, there are probably a million groups online and some of them must have people like you in them who like to talk about the same things you like to talk about and who can, at least in a "virtual" way, do things together.
If you can help others that may help you too. Maybe you'd benefit from volunteering to help students at a school or sick people at a hospital or old folks at a nursing home. Helping others takes us out of ourselves and gives us a larger perspective. It might be worth a try.
Get involved with other interests. Music, reading, movies, chess, computers - there are hundreds or thousands of very interesting things to do and some of them must appeal to you. The things that appealed to us in the past don't have to lose their appeal. If I'm depressed I don't think much about reading or music, but then when I do think about reading or music and spend time on them, I find that I'm not so depressed. Giving in to depression can be a vicious circle leading to more depression. But working our way into interesting things can be a virtuous circle, pulling us further out of depression.
We only have a limited time to live. That's true even if we don't have cancer. Something will eventually kill us. Let's make the most of the time that we have. Even if we're tired. Even if we're sick. Even if we're sitting in a wheelchair and dealing with constant pain, there's plenty of time to be dead but only a limited time to be alive. Let's do what we can to maximize our happiness and the happiness of others in that time. Why not? Tiredness, hot flashes, pain - they are problems for us but let's not let them take all of our attention. Let's still get the good things left to us and give what good things we can to others.
In answer to your first question, "Should I stay or should I go?" My answer is Stay! Don't leave us. Stick around.
I want to add one more note to my already overly long reply.
If you decide you want to live for as long as you can, or at least as long as you're not in constant heavy pain, there will still be times when you feel like giving up. That's normal and expected. When you feel like that I would like you to think about the things you did in the past that made you happy. Life feels very lonely and gloomy sometimes but not all the time. Don't give up during the low points. Aim instead to climb back up to the high ones.
Best.
Alan
You ain’t alone.. we’re All crazy after being thru what we’ve been thru.. I have the same thoughts as you.. I don’t know what I’ll do if the worm turns it’s ugly head on me again. I barely survived the first round with APC . You were on adt longerthan I. We all know that APC is a grind.. I’m 57 with only 4 yrs in. Happy upcoming birthday . Let me just say that 45 it must have been one hell of a punch to take..a bunch of BS.. I was pissed off thinking I was early to the party at 53.. my hat goes off to you for your perseverance.. Welcome MJCA .. I’m Scott
Welcome to the group of warriors. You are in the right place. All backgrounds of people here from all over the world with one unifying factor--we are fighting prostate cancer.
Lets forget about the Lupron and all that has happened....You are a young man...I know 59 is young as I am 80 today. I have done some form of ADT for about 18 month.
I took Zoladex about all that time for 18 months and Casodex and Finasteride.
This amount of time wouldnt cause CRPC. But I think that entirely depends on the type of cancer you have. A friend took Lupron at age 81 and lived to be 96 or more.
It saved his life.
I would take every known natural substance to prevent metatasis from occuring.
Yes you may be long lived but you dont want to live that life somehow in pain...do you?
You have to be vigilant and cautious. Maybe find a holistic doctor who can lead you out of the chemo arena.
Please know this, Patrick O Shea, knows more about PCa than most doctors. He has been posting on NTPC support group for years and is an essential component for survival. Listen to him.
I can send you his emails if he agrees to it and you give me your email address.
He will never agree he knows anything at all, but the truth is he is a whiz at getting to the info needed to make a course change.
Hell yes!! I posted again. I’m not going anywhere. I’m fighting!! My best friend is an O’Shea, that’s a good omen!!
My situation has changed. My will to live has not. I am here to learn. A few days ago I was in freak out mode. Now I am in “sponge” mode; soaking up as much information and data I can! Thanks for the offer I will definitely take you up on it.
I have been on Erleada for about 6 months now and it is starting to fail. In my 22 year battle with PCa I have been on HT 3 times for about a total of 3 years. The side effects from Eligard are similar to Erleada so there was no change in SE. My MO thinks that the adenocarcinoma PCa is changing to neuroendocrine PCa. Not good. I have my bad days when I can think of nothing but this thing inside me and when it will kill me. Then there are many good days like when my 3 year old granddaughter comes for a visit. What an uplift that is! I try to focus on her and on my wife to get in a positive mood.
On Eligard for a year then PSA started rising. MO added Erleada.
Welcome to this wonderful site. I hope you re-read Tub111's reply to you. She has given me great hope since I joined.
You're still so young. See a therapist -- anti-depressants could help, at least get you to consider your situation with greater clarity. I cannot know the pain and anxiety you feel and of course the decision is yours. So, good luck!
Fighting this disease is indeed tiresome . Like anyone with an altered, difficult life due to disease, accident, war, heredity, whatever, if we don’t find something to get our mind off our problems we’re done for.
We need to focus on things that make us happy. For me it’s family, friends, sports, wine , physical exercise, reading , volunteering, helping others, investing, traveling et al.
If you have depression you need to treat it or it’s impossible to be happy.
Well put...its not only PCa that is our enemy..Life itself as you age can be terrifying. Things that were mundane become horror shows as we start to doubt our minds,our bodies and all else around us.There are many threats out there and we wonder."Whats Next?"
Disease or not we are always going through periods of depression and uplift.
The disease itself ...if you have had it a long time can be a back burner item.
Depression can occur no matter what so we must fight that and plan to do things to alter that mood. Accomplish something ..anything. It doesnt have to be a big thing ...just anything will do.
So many great posts here to reflect on.
Should I Stay or Should I Go Now.....great song by The Clash.
2 years metastatic to bones and abdominal lymph nodes. All I can do is shrug my shoulders. Hey, j-o-h-n or somebody could you provide a link to "Always Look on the Bright Side of Life" (from Life of Brian) Sounds really appropriate here. I can't figure out how to do it. My phone is a real challenge too.
MJCA...to one degree or another we are all going through what you are, with the same concerns, doubts, and fears. Hell, this morning I was whining because yesterday, after 3 1/2 years of ADT (and a 6 cycle course of docetaxel) my PSA went from undetectable to 0.12, and my MO at the Mayo in Jax reminded me that I had already beat the odds (for median survival) for a Stage 4 oligometastatic PCa guy. A heck of a way to start the new year. Naturally, I was discouraged and depressed, but my wife tried her best to keep me positive. And, I am thankful and blessed for that fact. But, being human I think we always want more of whatever it might be...in our case, longevity with a reasonably good quality of life. Then I read your post and all of the replies to it, and started feeling a little guilt and shame for being such a whiner. None of this is fun, but we keep plodding along. As long as we keep trying, there is always hope that we might live long enough for researchers to find that magic bullet that will at the least turn advanced PCa from a death sentence into a chronic disease. Once we throw in the towel, the game is pretty much lost. Stay or go? Definitely STAY! Happy New Year.
I'm not a lot different than you. Almost 3 years since diagnosis of stage 4 PCa. Lupron/Casodex/Xgeva recently switched to Lupron/Xtandi. Developed ONJ from the Xgeva. Fighting that, too. Side effects of treatment is brutal. Chemo might be easier. PSA readings are low, but doubling every 3 months.
Seems to me there is a lot of effort and research on controlling PCa but not much effort spent on a cure. I guess there's no money to be made in a cure. Doc said his job was to keep me alive long enough that a cure would be found. But I'm not sure anyone is seriously looking for a cure.
Your fight with Pca is only beginning. The ADT suppression does not last forever and the Pca may need chemo or systemic radiation with Lu177.
I was diagnosed in 2009 wiyh Gleason 9 and had 6 years supression with ADT and then had Casodex, Zytiga, then 3 months chemo which did not work well so I am now having Lu177 Theranostic treatment, and I suggest you can find out more by Google about theranostics.
I think there is not much which delays bone mets and I think you need to have PsMa Gallium 68 PET / CT scans to find out where all your mets are.
You cannot ever assume you have no bone mets. Mine began long ago, and were suppressed with ADT so they remained too small to see in CT scans.
But they eventually grew big enough to appear in PaMa scans in 2017, and have got bigger quite quickly, and my Psa is only about 25. My Pca does not make a huge amount of Psa for the amount of Pca present.
I have my second infusion of Lu177 next Friday. I think the Pca will kill me, but not tomorrow, and all treatments can only delay the Pca progress and remision is extremely rare.
You say you love life, and sure, I do too, but you have to fight for the things you love, so you need courage and the best doctors, diagnosis methods and treatments you can find. I am in Australia and Lu177 has only become available over last 3 years, and it is expensive, $40,000 for 4 infusions, so not covered by our Medicare. But Medicare has paid for other treatment worth maybe $150,000 since 2009, and I spent $15,000 in 2016 for salvation radiation to PG, ie, additional beam radiation to PG to add to what I had in 2010. There was too much Pca at PG at that time, and docs could not remove PG.
But I am 71, and over last 3 weeks I have cycled 317km average distance per week, and at good speed, so despite being riddled with cancer, I can still be a good athlete, and not suffer depression, or get fat, and maybe I live another 5 years. Nothing is certain though.
Some immune therapy has been talked about recently at this group and I don't know much about it, or what % of Pca patients get any benefit.
Without ADT and other treatments I have had so far, my overall survival time would have ended in about 2014, with quality of life ending maybe in 2013. The only way to beat Pca is with a successful RP that gets rid of all prostate gland tissue including the small amount of Pca when Gleason score < 5, so that 5 years later the Psa is undetectable and Pca has not developed in the small amount of PG tissue left behind in operation, and there really was no spread before the operation.
But so many find that even with low Gleason score the Pca continues on after they have a RP. So it usually becomes a chronic disease, needing a continued succession of treatments. The most aggressive treatments are kept to last, because if applied early they'd fail like everything else does, but side effects
may be disabling. So ADT is used before chemo, not the other way around.
ADT with RT causes complete extermination of for a man, and he'd have to engage oral sex or use a vibrator etc, whatever with a partner if at least one of thre two ppl are capable of an orgasm. I'm, 125% hetero, but am 71, and if I had a wife of say 65, she would have not wanted and not have been capable of sex for previous 15 years at least, so for many ppl about my age, sex is over, its a thing remembered, oh how nice, but never no more. And for many, sex was alays a bit awkward, the lady often never has an orgasm and does not feel desirous, and has difficulties with her self image, and does not get turned on by her man who is grossly overweight etc, etc, etc. So for me, expecting sex to last forever is rather silly, because it is so rare that any couple can be sexual over 60, let alone 70, 80, 90. And I found nobody is OK about being close and intimate without sex after 60, unless the pair of them have come to terms with loss of abilities via aging or medical interventions over a long marriage they both enjoyed; but that too was an impossible dream for me.
But being solo, and with ZERO future sex, and with no intimacy with anyone else, I find life worth living, and there is only wonderment and humour left, enough for me now.
Even with Gleason 5, and a well done RP, there may be mets elsewhere and from little things, big things grow, and much treatment is to control the mets, and it is the mets, ie, the spread of Pca and its effects on vital functions that usually kills a man. We like to think we have no mets when scans are clear, but mets may remain so small we assume there are none. Wrong. Always assume you have mets until proven otherwize, because one reason Pca is so deadly is that right after a tumour develops in PG it immediately generates mets elsewhere. But like everything, there's a time when this occurs, a threshold when initial Pca will naturally begin to spread, and from what little I know, just when mets begin varies between men and the Pca agressiveness varies between being a wuss that takes 25 years to become castration resistant, or only 3 months, so there are no absolutely universal definitions of any man's Pca, and what it might do after being detected and treated, or how it may have spread before being detected, or after.
I am very fit for my age compared to many men with a number of other co-morbidities, ie, conditions that will kill them given enough time, eg, heart troubles, or diabetes, obesity, lung cancer, whatever.
I cannot live forever even though I chose to live as an athlete, stayed slim and fit, not eat or drink wrongly, and not smoke.
My dad was happy for over 5 years. Now things are hard, but he relishes small joys. Did he travel. See friends..work..have fun. Yes he did ! We all stand behind your personal choice xo
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Love the way one has to clarify these things in 2018 
Question about Medicare Part D Choice
Should I stay, or should I go
Should/Can I take zytiga/xtandi et al without metastasis diagnosis
PSA RISING
