I have tried almost all available options and the numbers continue to get worse. Pending treatment options - immunotherapy (low success rate) or JEVTANA (could buy me a few more months).
The last 12 months of constant nausea, which still continues even after I have stopped treatment, has left me very tired! The QOL of life has sucked! I have been thinking, if I can, I buy a few good months instead of 1-2 years of living through another chemo spell. More than my body, my mind cannot take it anymore. I am so so tired!
Trying to figure out what to do next, move to hospice, and let nature take its course? It is not the easiest thing, to plan your own death when it is going to result in your 14-year-old son being orphaned.
I CANNOT have him go through what he had to help me do for his mom, at 9 years of age when she died from brain cancer. He and I were changing diapers, and meds through tubes, etc painful for loved ones to see ;( There is no way I am letting him see that again. I have also discussed with my palliative doc the legal option of to End of Life Option Act (available in California).
It is so hard to figure out when to pull the plug. What is the best value that I can provide to my son right now? The news that without meds I will have a few months left has given him some amount of new stress, and depression, besides having his own teen issues to deal with Do I try to stick around longer to give him some more confidence with his evolving situation or do I rip the bandage, let him grieve, and move on? He is going to be starting high school this fall, and important school years coming up. I do not want to stand in his way, as it is, I am of limited use to him right now anyway.
Thanks in advance for your 2 cents 🙏
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Maybe ask your Oncologist about a couple of off-label options to introduce .... Here's one finding from PubMed --> ncbi.nlm.nih.gov/pmc/articl... (may have to be taken with SOC Lupron etc...)
Have they tried giving you Xtandi? With another drug (Lupron?)
I have not tried Xtandi yet, maybe I should. My doc did mention that we can try it after Zytiga has failed but then we never tried it. Thanks for reminding me.
May be best if taken simultaneously with Lurpon (or similar). Note: I had to drop down to 1/2 dose Xtandi due to adverse event, still effective , coming up on year 4. (Xtandi can be expensive, Astellas will work with you for free, lower cost, ask your Oncologist office to help with the paperwork) Grants also available, I will dig up the names and send to you. 🙏
You may also want to reach out to Xtandi Support Solutions, for help applying for the Astellas Patient Assistance program (xtandi.com/financial-support) .
Their call center number is 1-855-8XTANDI (1-855-898-2634). The call center is open Monday through Friday from 8am to 8pm, EST.
Another PubMed article - Talazoparib plus enzalutamide (Xtandi) in metastatic castration-resistant prostate cancer: TALAPRO-2 phase III study design. pubmed.ncbi.nlm.nih.gov/350... (I don't know much about clinical trials but maybe your oncologist can get you some Talazoparib and Xtandi ) ?
Perhaps you and your son can benefit from some sessions with a psychotherapist/social worker? I think it is important that he be given a forum to be heard. You can't protect him, as much as every fiber of your being would like to, but you can assure that his suffering is acknowledged.
Thanks TA, that has been my focus. Both he and I did some Theraphy when his mom was sick and then for one year after her death. He is going to start something new through his insurance next week that I can join him for now and he can continue later as required. I got him some counseling at school too.
There are other clinical trials besides the immunologic trials. There are 3 trials for protacs, one with ARV 110, other with ARV 766 and other with CC-94676 which is done at Stanford.
Try the Fenbendazole 4 days 3 days , and the Paw Paw, nature's sunshine 180 mg , 2 months , retest psa , with fatty meals , healthy mtc oils , also try tributyrin and sunfiber. Cancer is a metabolic disease too.
Don't give up..... Try a clinical trial. Try something (other than Chemo) in hopes that it gives you some relief and some quality time with your son. I'm praying for you and your son.
groundhog wrote -- " My God...I wish these .... ... doctors would spend some time in here viewing their handiwork. They might not be so cavalier......"
How about a PCa doctor who develops a Proprietary PCa Immunotherapy Protocol for his patients and is himself diagnosed with PCa that has metastasized so decides to direct a doctor friend while under a spinal to perform the surgery while awake since he is the only doctor who has the needed knowledge.
Could call Dr. Gary Onik in Ft. Lauderdale. He will talk to you and IMO will be truthful and caring.
Thinking and praying for you and your dear son. Such sadness at such young ages.Don't give up, try alternative options DCG as was mentioned on here the other day. Fenbenzadole (Joe Tippens) Jim Gordon herbs. These are all anti inflammatory, immune boosting treatments. Very best wishes to you both, my heart goes out to you.
Research your options. Then follow your own path. There are many options. To a non medical man such as myself they get confusing! However research and this forum have been much help. What ever your choice I wish you well.
Thanks so much for your powerful and emotional post. Others who are responding to you have offered food for thought and viable options.
Ultimately, only you can decide when its time for hospice; the most difficult decision any of us can make. But, if you can continue on as best you can, with your team of doctors, then keep going and fight for yourself and your son. You are your own best advocate.
How is your palliative care doctor helping you? Do you feel he/she is effectively handling and mitigating your side effects? There are effective medications that help with nausea, pain and anxiety.
As we all are aware, a rising PSA is only part of the disease progression story. Scans are also essential to tell us where we are at.
I hope you have viable options for your son, where you can find a loving and nurturing home that you and he would be comfortable with, like a close family member?
my heart goes out to you and your son. I hope and pray that UCSF has some suggestions for treatment and that they work. However, if that doesn’t happen or you choose to stop treatment, I strongly believe that he needs to have a voice in what his role is. thehospiceheart.net/ is a resource that I highly recommend, she offers multiple classes that may be of interest to you and/or your son. She has a current class she’s offering, “when is it time to die” with the hemlock society. hemlocksocietysandiego.org/...
In the meantime I’ll keep you and your son in my thoughts and prayers.
Ugh. I wish I had a fancy treatment suggestion but I don't. How is your health, other than nausea? Have you lost any mobility?
My husband's experience aligned almost to the day with the end of life calculators. If you really need to know, that's a way to get a read on how much time you have without treatment. It's not easy to do, but in your circumstances I can see why you might want to.
Health is ok. Other than the nausea, which is making me lose weight. Besides cancer, I have no other disease 😊 All through my son’s school, until Covid, another dad and I used to take about 15 kids on a long hike, all over the Bay Area 😊
Yeah, my husband's doctor told him at checkups that his heart stats were so good he could "eat a stick of butter" if he wanted. "Besides cancer" is like "how did you enjoy the play, Mrs. Lincoln?"
Seems like there are some last-ditch self trials in this thread. Not sure I would have the courage myself, but maybe something would click?
Barry, I don't really have any great idea for treatment/therapies. I wish I did. But my heart goes out for you, and especially your 14yo son. It is actually making me choke up. May be someone will come up with something.
I am not as far along as you are but there aren't any treatments that I will put myself through as I watch my PSA's rise. Just have to wait it out like you may do.
The one thing that I decided is that QOL is the main goal along the way. What that means for you and your son is up to you. It sucks when you don't have the answers you want. You have to decide. I'm with you though in refusing to let my loved ones go through the diapers, IV's in bed, pain, etc. I would not be fun for me either.
I went to a local hospital seminar on this type of situation. They went over options, including counseling for you and for loved ones. They went over hospice care as one option and several others. I'm sure you have gone through the preparations to make it as easy as possible for your son. I have done that for my wife and we have had many discussions on it while it is still months, may be years away.
If you can find some support like that it might be very worthwhile for you. If you aren't already doing that.
Wishing as much peace for you and your son as possible.
Barry, I have been on Zytiga and prednisone for 5 years. PSA starting to rise the last year after being <0.1, and T <10. No nauseating SE. The rises were quarterly to 0.56 and my Onc didn’t do anything. I switched to a new Onc and he immediately insists on Lupron and PSA went back down to 0.1. Then he mentioned that PSA will probably start to rise again soon and will then switch me to other second gen ADT drug. For you most promising will be apalutamide (Earleada) which also have the anti-tumor cell capability. That is even more so since you already have Mets elsewhere. Do all you can to survive since your son is only 14. He needs you
Xtandi full dose until you can’t stand it any longer then half dose. Turned my life around. Hang in there as long as you can for that child. Don’t wait for next appointment and call for the meds. Lots of options on getting qualified for the costs for Xtandi.
I don't fully understand your condition but I get the impression that you are suffering more from treatment than from aPCa. I wonder if you are jumping to conclusions due to your poor health. Your PSA is still low, you have a throat lymph node met, and no bone mets. I was in a similar situation a few years ago but Lupron stopped my PC progression, and heat killed the neck met. I guess you are castrate resistant, thus chemo Pluvitco? My guess is you would benefit from a diet high in lycopene. Also apply heat to the lymph node met. There are things you can do without waiting for doctor visits. And you should live for years. Oh and yes to Xtandi.
I have Mets in my bones, for a while now. Some went away with chemo. Others around my ribs and sternum bone have been around for a bit and are not going away. I did have some earlier Mets in my pelvic and backbone go away after chemo.
I waited on responding to this very visceral post to see if I had anything to add after a lot of great comments. I do, because I understand exactly where you are coming from and I appreciate your honesty.
Your situational understanding is perfectly clear, from the physical to the mental. Your experience with cancer - from your wife's to yours - is, unfortunately, unparalleled.
However (like me so many, many times), you seem to be willing to let yourself decide for others, i.e., your son, to spare them pain. I would be lying if I didn't say that I personally agree with your reasons.
But I was told by explicitly by my 15 y.o. teenage daughter (now 22 y.o.) that I couldn't tell her/request her how to feel. She had feelings and opinions - lots! - and one of the strongest was that she felt that it wasn't her job to make it easy on me. "Sparing her" was - is - a grave and personal insult.
Trying to understand and respect how my daughter and son (now 20 y.o.) feel while trying to understand how I feel (!) has been the hardest part of this experience for me. I'll admit to you that many times I don't want to engage in any this because I'm just sick of it all - the treatment drama paired with exhaustion and pain and ultimate loss seems ridiculous to me.
Make it a priority to help your son find his most honest voice so that, whatever you decide to do, you can say that you considered that voice and its opinions.
Thank you so much for your very thoughtful reply, it along with a few other opinions have convinced me that I need to invlove him more in this decision.
We do have long chats these days. The other day I told him that my palliative doc has suggested that I leave you written notes of videos for your graduation, wedding etc, which I might but I want to say to you everything I can, in person now. He has received it very positively and even responded with things that he would like to know more about. If I am going to expect him to act as a grown u, I have to respect him as one.
I am very proud of my son, seems like at least I got that right, my trip to earth has been a success 😊
I am sure there isn't anything I could say that hasn't been said already by this outpouring of support. Just that what a tough question and I feel for you and your position, literally.I think having him involved in a decision he will be a part of no matter what you decide may be the right course. But I also also think it could go either way so you know your son and have to make that decision.
I really hope you find peace in your decisions with your son and for your future. Many of us will want to hear how things go so please let us know.
Try the Fenbendazole treatment, many have tried it and been successful in stopping their cancer but there have also been others that tried it and were not successful. It is worth a shot at this point. My heart goes out to you.
Another friend of mine said - ”ITS GOING TO BE OK“ and I replied but it is OK ALREADY 😊
I know he is going to be ok too after me. Obviously it is not ideal but during a recent evaluation, the results showed that he was down but it seems he also has some coping skills to not let it disable himself, or have me a lot of confidence 😊😃
When I did, what you suggested above, starting asking friends for help in concluding my matters to better support my son after me, there was such an outpouring of support. It has been so touching, emotional to see friends and family reach out, I would really have liked to attend my funeral I feel like I lead a good, righteous life 🙏
The told my son, this is the true “wealth” of my life that I am leaving you! I have had a blessed life 😊
I was faced with a similar situation years ago. I am still fighting the bastards since 2002 and I am now 86 years old. I found myself wandering the street talking to myself and finally thought of all those young soldiers storming the beaches of Normandy during WII. They didn't have the chance that most of us have had, so I stopped feeling sorry for my situation and said fuck it John just fight those bastards every fucking day. I was on Lupron and Casodex for 15 years, and my M.O. (at MSKcc) recently replaced my Casodex with Nubeq/a ("/" = missing u). So give it your best shot and beat the bastards.
He will appreciate that ;). He is quite a cook and enjoys a rib eye 😊.
BTW if I'm the one who's paying..... what's his name? You can always help him in his college work (and I don't mean with the girls). Keep on Keeping on....... Regards to you both.
I read your post and your bio. If you’re at UCSF you are certainly getting great care; I go to Stanford. Have any clinical trials been brought to your attention? I understand the fatigue. I have had this bitch 17.5 years. Just had my third round of Taxotere. Given the age of your son and what he has already been through, I am sure he is quite mature.
You may wish to chat with him. Your actions affect his life. Allow him be a part of the decision process. It could be best for you both. Sorry no other pearls of wisdom.
My heart goes out to you. We are also in the Bay Area, Castro Valley, & my husband has stage 4 PCa, very aggressive, dx at 54, gleason 9 & PSA 22 in 2016. He has done medical treatments but has also used Epigenetic Nutrition. His first doctor said he had never seen anyone go through treatment & do as well as Paul. I probed Dr. Aggerwal at UCSF recently because Paul is starting another medication vacation this month. The doctor said he is definitely above average in his results. We have been blessed with a very full life after marrying 4 1/2 yrs ago. Do you keep your options open? Would you like me to send you information to review on Nutritional Epigenetics & cancer?
Just let me know. You & your son will be in my prayers ~
I spoke to Dr Aggarwal too last week, he is not my main Oncologist at UCSF but he wants me to participate a immunotherapy clinical trial. He wanted me to do a biopsy but I cancelled it. I am just tired.
Thank you so much everyone for your overwhelming support, and concern for my son and me, very grateful 😀🙏, as I said, I am 😇
Some of your suggestions made me realize that I need to give you a better picture of what is going to happen with my son, after me. I have a nephew, he and his wife live in San Jose, they are going to be my son's guardians after me. He graduates middle school this month, we are going to move to San Jose, very close to them where he will attend high school. He will live with me while I am alive and move in with them after me. He totally loves them and they both adore him. In fact, he spends a lot of time with them even now. With the baby coming and us moving close to them means I am never going to see him They had volunteered to take up the position when I was diagnosed. Later when I asked my son and he said he has to be with them. In fact, he specially asked me to make sure that no one else in the family should be able to force him to be with them, instead of my nephew and his wife. Plus they are expecting a baby boy in July. He is so excited, he tells me that I am finally getting the brother you did not get me. That was a long-standing demand of his but then his mom and I had an ugly divorce (story for another day), then 8 years later she gets diagnosed with brain cancer and I brought her back to my house, there was no time to have another child, I do wish now that he had a sibling.
That plus my amazing friends network in the area, some good friends since elementary school, high school, engineering college, and then masters, in fact, my best friend is coming to stay with me for 3 weeks to help us move. what can I say, I am 😇
I am at peace with my life. I am OK with ending this journey. The worst thing right now for me is to not put my son through anymore. He is going to be in a happy place. He may even be better off without me, I feel like I am only slowing him down now. I did have my palliative doc sign my POLST - DNR, guess it is called "AND" (allow natural death) now The ideal scenario, I pass in my sleep, how peaceful would that be for everyone 😀 I am donating my body to science, so no complex funerals to do, people can move on with their lives and I can start my next journey
Shoot I was thinking "can we adopt him?" Then I woke up to the fact that I would be playing ball in the park at 86 years old with my balance issues. I rather see him with you at his college graduation holding an engineering master degree in his hand. Meanwhile your move closer to your nephew and his "family" is a great idea. However moving and down sizing at the same time is freaking work.
Wonderful picture of your son feeding his ailing mother. Very touching on mother's day. Looks like a good kid and smart as a whip solving rubix puzzles in seconds.
I hate repeating myself but give fighting those tiny bastards "the old college try".
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Do I try to stick around longer to give him some more confidence with his evolving situation or do I rip the bandage, let him grieve, and move on? He is going to be starting high school this fall, and important school years coming up. I do not want to stand in his way, as it is, I am of limited use to him right now anyway.
Where do I go from here?
How do you find a good oncologist and how do you overcome the side effects of Lupron?
My brother has advanced Prostate Cancer
Next line of treatment: too many options
Docetaxel, Chemo in general
