Need guidance: maybe stopping treatment Due to treatment failure

[Cancersucks]

Ex's PSA now 99, up from 32, 5 weeks ago. Started xtandi 4 months ago when PSA was 30. He doesn't want to ever do chemo again and is very resistant to Zytiga because of the concurrent prednisone requirement. Onc wants to try Xofigo and Zytiga now. He received his 3month lupron shot but is considering ceasing all other treatments. I'm not sure how to guide him. He is 45 years old and we have two children under 8 years old. He was diagnosed 1 year ago with a very aggressive cancer, PSA over 2700. We knew treatment failure was a possibility but our family is struggling. Right now, his quality of life is more important than quantity. Pain is intense, but well controlled with narcotics.

[Darryl Partner]

It is unfortunate that the course of your life together will be shorter than you wish. There is no medication for love, happiness and quality of life beyond his desires. Though you may have less time together , respecting his wishes and getting on with thoroughly enjoying the months and possibly years left will reduce tears and regret.

[CERICWIN]

I'm so sorry to read that he hasn't had good results, and wouldn't it be worth trying the Zytiga---even for a short time? The prednisone might just make him feel better.

After I had radiation treatments recently, the stress of the radiation and also emotional stress brought on a rather severe eczema, and I had to see a dermatologist for the eczema and also bacterial infections because of it, and he gave me an injection of Kenalog---a steroid. I dislike steroids, but sometimes they are necessary.

The steroid injection not only cleared up the eczema, but stimulated my appetite and I felt better than I have in a year---very unexpected benefits. I've been on Xtandi for more than 20 months, with fatigue, loss of appetite, etc.

At 45 it's too young to give up. I hope that you can find a treatment, or if you must, accept stopping treatment; it's a highly individual decision. I'm 67, and have a lot of difficulties with side effects, but I'm nowhere near to giving up.

I'm on palliative care, and take morphine for pain and Dilaudid for breakthrough pain.

My heart goes out to both of you--- I will come to a decision of stopping treatment or continuing at some point, and I fully understand what he's going through, and you, too.

God bless you,

CERICWIN

[erjlg3]

Heartfelt thoughts for all of you.

[Gecrellin]

I don't like the steroids either, but most of the cancer drugs seem to be paired with prednisone. So far, I have been through Zytiga, Xtandi, Docetaxel and now cabazitaxel. That's over 2 years of nearly nonstop prednisone. The only apparent side effect is increased bruising, especially on my arms. On the positive side, I remain pain free and have not had side effects from any of the drugs so far, and have not experienced the weight gain or puffiness often associated with prolonged prednisone use.

Like you, I am more concerned with quality of life over duration. I am nearly 66 and our children are adults, but I am focusing on quality of time with my grandchildren.

These are obviously personal decisions, but hang in there and consider your options thoroughly.

[motosue in reply to Gecrellin]

Gecrellin,

Thanks for the info about the side effect of bruising on my arms. So that is from the prednisone that I am taking huh. I always wondered what medication was doing the bruising on arms.

motosue

[patandemma]

Might want to look at this YouTube video

youtube.com/watch?v=Nkqizmv...(Not working as expected?)

Eugene Kwon MD a urologist and major researcher in immunotherapy at the Mayo Clinic gives his reasoning and his experience with aggressively treating recurrent and widespread metastases in castration resistant men with some times very good multi-year remissions He seems to rely on C-11 choline acetate PET/CT scan to find all the metastatic foci and then using all modalities of therapy,probably including pencil beam proton therapy (Mayo got it i2015)

[motosue in reply to patandemma]

patandemma ,

Thanks for this great video. How did you get it? From the PCRI conference meeting tapes?

Perhaps I'll contact Dr. Kwon again to do some scans/MRI.

motosue

[Hidden in reply to patandemma]

Very informative video, thanks. Brings up another issue for me. There is a Mayo Clinic here in Phoenix but my crappy Medicare part B HMO plan does not allow me access to Mayo. Does anyone have experience in navigating part B options or choices to get access to Mayo? I'll be looking to sign up with a better plan when that window opens up. Seems like prostate cancer falls mostly in part B territory at least for the early stages of treatment. If I go out of network my plan covers nothing. Also wondering if any other Urology practice in my area offers the choline C-11 PET scan.

[wrando]

You might want to look into a couple of clinical trial...one for Galeterone and other for VT-464. If he's not up to it maybe you could look into it. You could look here or there is a government site with trials listed... mcancer.org/clinical-trials...

[DFZ4835]

Please don't give up just yet. I'm sure your oncologist will find the correct combination of drugs for your ex. I have stage 4 PC with bone mets and arthritis. I was diagnosed in September 2011 with very aggressive pc. My oncologist found some good combinations of drugs for me. Everyone is different and I believe there is relief for him out there. Prednisone works like a pathway to to the cancer. I have no adverse reaction to the prednisone other than bruising. Don't give up on life. Dennis

[motosue]

Please watch the video below. It might convince you to go and see Dr. Kwon to see what he can do. And that video was made in 2014 so perhaps something newer might have come up that you can do since that video was made.

Many blessings to both of you.

motosue

[Charlean]

Not to be a downer, but I am pretty bitter about wasting so much time and misery with all these drugs that are being touted as wonderful. My husband suffered through all those damn drugs with all the possible side effects(never failed) until he finally just said no more. Even the Xofigo caused him far worse pain than he had prior to the radium because he was suffering spinal cord compression. Zytiga worked supposedly for 4 months and Xtandi made him so sick he quit after two. When I look back prior to his paralysis, the past two years was full of nausea, stomach pain, muscle aches, weakness, etc. due to treatments, not the cancer. No real quality back then and now definitely no quality of life. I wish he would have stopped this stuff long ago. People who use these drugs for years with little side effects and extended success most likely don't have as aggressive PC as some do so they may think the drugs are wonderful since their cancer is just a slower growing cancer. But for those with fast, aggressive cancer, I feel it takes away whatever time you have that could be more enjoyable. My husband just got home from 11 days in the hospital and 8 weeks in a convalescent hospital for rehab after getting radiation to his spine AFTER the compression paralyzed him. They did so much damage to his throat that he couldn't even swallow ice for 9 days, had aspiration pneumonia, deep vein thrombosis, embolisms in his lungs from being in bed for days...so much for quality of life. This was supposed to help with the little pain he had in his neck!! Now he's on blood thinners for the clots and is far worse and weaker than prior to the radiation.

Even the Lupron they want him to keep getting makes my husband feel depressed, weak, achy and I don't understand why continue with this stuff. He is pretty well done according to them and he needs to go home and get ready to die. Yes, that's what our oncologist just told us. Fact is, for those with aggressive cancers, I finally believe it will keep getting worse no matter what you take or do though. I respect your husband for making his own choice here. He is not giving up on you, he is taking charge of his life. Look to alternatives if you want to continue fighting. At least they don't kill you. Now just enjoy it and let him do the same.

[gusgold in reply to Charlean]

Charlean,

Boy you got that right. My father went to the Mayo Clinic to receive the Choline 11 Pet scan. Dr. Kwon is a big BS artist and has a real nasty PA working with him who makes fun of you behind your back. He had a moderate case of PCa. Listening to Kwon he went through Chryo...radiation...and 12 months of ADT for a total cost of $350,000...after 12 months the cancer came back far more aggressive with a doubling time of 3 months...before all these BS treatments the doubling time had been 9 months

[Hidden]

Hello

I am terribly sorry to hear about your husband's disease. I am not a doctor or any kind of medical expert. I am a patient with late stage prostate cancer. I have been through all the treatments. I was Dx'd a bit over 10 years ago at age 49.

I have no answer for you other then it is your husband's decision and whatever he decides is right for him. It is not giving up. It is picking the path that is right for him. It sometimes takes great courage to follow your own path.

Maybe you can pass the following message on to your husband. Personally I found the Xtandi to be the most difficult drug to take ( including taxotere,carboplatin and cabazitaxel) and it did not work very well for me. Prior to the Xtandi I did combine Xofigo and Zytiga and it was not too bad on me. 6 Xofigo shots plus nine months on Zytiga. It may not be as bad an effect as the Xtandi. I don't like the Prednisone but it was not an issue for me.

If he wants to talk about it e-mail me at [e-mail].

Bill Manning

[charmander]

I've been in zytiga for 14 months now. The prednisone dosage is 10 mg per day (2 tablets). This is a low dose and is meant to replace the bodies natural production of prednisone which ceases from zytiga. I have experienced no side effects that diminish my quality of life other than (this is in my head now) my body's fat has repositioned itself around my middle.

I had my prostate removed with a pasa of 35 in 2013 and have received shots of lupron every 3 months and exgeva for bone strength every month. My psa has been rising ever since surgery and is now at 20. I'm expecting that doc will want to switch me to xtandi, which I am told is my last line of meds. I too am resistant to chemo due to the potential and likely side effects.

Zytiga and its required prednisone have not really been a big deal for me. The printed side effects had me scared to death, with jaw bone death dancing in my head. It is understandable to me that when faced with the inevitable end of life looming ever closer that a WTF attitude comes over one. What good will a new medication do for me anyway. I would maybe not honor that thinking but at least acknowledge it and talk about what he wants for the rest of his life.

Anger can be a righteous outcome of dealing with advanced pca. At least for me that has been the case. I've come to a more peaceful acceptance of the inevitable and look to pack my life as full of experiences and connections as possible. I am desperately working to leave remnants of my existence. As hard as this is for you, your husband's decision as to which path he chooses is his to make. If you or he wants to talk with a fellow walker of the prostate path my email is [e-mail]

[Bryce]

I'm really sorry. I also am young (46 years old) with an 8 year old. I also was diagnosed with aggressive prostate cancer, some of the fastest progressing PCa that my doctors had ever seen. I did 6 rounds docetaxel early on but won't do chemo again either, sucked and I'm big into quality over quantity too (I'm very active). I also don't want to fool around with Zytiga/Xtandi because of the serious resistance mechanism that I believe they trigger (Google neuroendocrine prostate cancer and you'll see what i mean.) So, what do you do? My advice (and that's all it is): Get him sequenced, find out what his driver mutations are and go after it with something targeted. After standard of care failed me, I said screw it. I got sequenced, found the driver mutations and went after it with a targeted drug. It worked. Very manageable side effects. Will it work forever? Dunno. Probably not. But if it starts growing again I'll just sequence again and find out the new driver mutations and go after that. This is just my own experience but it worked and I wanted to share.

[erjlg3 in reply to Bryce]

Only admiration are you a rocket scientist I do not have the brains to understand what you have done but I am so glad that you do have the brains to do it

[erjlg3 in reply to Bryce]

Bryce.....How do you get sequenced if the biopsy misses the target?

Does it have to be a biopsy to get sequenced?

Thanks,

Jackie

[Bryce]

Haha! No. I'm just a marketing guy in a tech company with a healthcare division where i learned this stuff. It's really just big data analytics. More of my story is on the Cure Forward site (cool start up) cureforward.com/stories/per...

And there's a video with my story that is about 1.5 years old but occurred at the time I got sequenced and it set me up for the lucky success I've had to date.

youtube.com/watch?v=QK9kLCP...(Not working as expected?)

[Cancersucks]

Thank you everyone for the honest replies, especially from those dealing with fast growing aggressive cancer, like us. It's difficult to remain hopeful about pursuing new treatments when nothing has worked for very long. He agreed to schedule an appt with a radiation onc to explore xofigo. He did receive zytiga in the mail but is resistant to take it. I imagine his cancer is running amok with only Lupron in his system. Pain at L1-2 and left hip so bad he is vomiting and nearly unable to walk. Indeed he is at high risk of cord compression right now.

I have previously looked into precision medicine. Here are the issues: he is on Medicaid and has NO funds to pay out of pocket for treatments, denied disability for the fifth time and unable to work, we live in rural America and have to drive 2 hours just for onc appts, chemo, etc., cancer is progressing quickly, he is tired of endless treatments, etc. we are trying to save money for genetic testing if only to pass the info along to our kids as early cancer death runs in his family and nobody has been tested for BRCA, etc.

Ultimately, treatment and genomic sequencing are his choice and we are all different in how we fight and how we embrace life. I can imagine that hope is an elusive feeling amongst constant physical pain, fear and suffering.

[erjlg3 in reply to Cancersucks]

I am deeply sorry for your whole family's situation

[BillRinMontana in reply to Cancersucks]

It is unconscionable that disability was denied. Contact a lawyer, Social security will pay for the legal expenses and you will receive retro payments back to the first time you applied!

Call an attorney, he will verify what I've said.

[sdnb]

I'm sorry to say, but I agree with the lady's whose husband did everything possible, yet his oncologist suggested "he go home and get ready to die" (or something to that). My husband, also, was diagnosed in 2010 with stage 4 prostate cancer. He began with hormones until July 2013 when his oncologist said he needed to begin chemo due to inconsistency with PSA scores. He started with Docetaxel (Taxetare), with a port in his upper chest, but he did not take prednisone. He did take prednisome previously when he was trying Zytiga. This was noted as the "best of the best", but it did nothing for my husband except caused great red swelling in his legs and hands. During the period between 2010 and 2013 he also tried Ketaconesole (spelling?) with prednisone. At some point, he tried Xofigo, and then Cisplatin with Etoposide. I can't even remember all that he tried. In 2014 again the Docetaxel began to fail, and he had liver mets and bone/spine mets, yet he said he had no pain. But in Oct. 2014 he had to go to the Emer. Dept. due to the increasing swelling. From that time on through 2015 my husband was such a fighter because he was in pain, but decided to keep it from me. Unfair to me because all along I'm thinking he's doing Ok, other than tired (he kept calling it "sleepy"), and loss of appetite. Each month it was very obvious things were not good, not good at all. He developed pleural effusions and had a catheter put into his side to drain the fluid off from around his lungs. A home health care nurse came to our house 3x/ week. In September she said he must go to the E.R. because he was extremely swollen. His scrotum was enormous and uncomfortable, as every other body part. He was so thin with bony shoulders and paper-like skin that ripped open easily and stayed bruised. He stayed in the hospital for 8 days, an infection set in at an open wound from scraping his leg on a box, and he developed RMRS (staph). He stayed in the bed for 8 days, so when he came home, he was very weak, and almost a stranger. He stopped talking with me because the pleural effusion caused such shortness of breath. He stopped eating basically because everything tasted like cardboard. He couldn't get comfortable enough at night to sleep, even with pillows. Finally, October 12 he returned to the ER and was admitted to the hospital for 5 days. On the 6th day, October 17th he passed away at the local hospice where he was taken the night before "to die". Please let the decision to end treatment be his alone. My husband quit treatments in September, and we had only one month to the day before he left me. I decided right then, never would I take the harsh chemo treatments that he endured. The couple of years from 2010 and 2013 were hardly noticable, as far as his illness. But once chemo began, I lost my husband in so many ways, until death took him permanently.

[sdnb in reply to sdnb]

It's me again, from the previous post. I failed to say that around 2014 my husband began Xtandi, which I felt did the most to help him. Others here are saying how awful it was, but unless my husband kept that from me, as well, I think it at least kept his PSA scores down the longest amount of time. When diagnosed in 2010, PSA was 20.9 . Looking back, that in itself was great compared to the highest score the week he passed away, 119. He did not throw up, like others. My husband was 68 when he passed. He had been very active up until he turned 60! He also had Lupron injections every 3 months, and Neulasta to fight infection a day after each chemo treatment. Hindsight is just that, but I feel there would have been a better ending to our story had he stopped chemo when it first began to fail. Yes, his death was eminent, but he took a toll with the chemo, to the extent, that his oncologist confirmed to me afterwards that my husband "died from the chemo, not the cancer." Another doctor said, "it was the pleural effusion causing his heart to work harder and harder, until it finally gave out." Some said, "it was the liver mets". A combination of all of those? Who's to say? But I regret his continuing treatment, in hopes of watching our three young grandchildren grow up. They saw what the chemo was doing to "Poppi", and that breaks my heart because they will never understand that Poppi sacrificed his health with chemo to see them grow up, and it still didn't happen.

[erjlg3 in reply to sdnb]

[Jay10 in reply to sdnb]

😂

My condolences to you and your family

Jackie