Good afternoon, my dad has been battling this awful disease for 2 1/2 years. We have exhausted the majority of treatments. He has been on abiraterone, Xtandi twice, zytiga, Docetaxel, radium-223, BAT and now he is about to get his 8th treatment of Jevtana. He is 77 years old and is tolerating the Jevtana pretty well. His recent bloodwork shows his PSA is a little over 1000 and his phosphates are just over 300. They are slowly creeping up. He has a great appetite and is awake most of the day. He had surgery in July to remove a tumor, fused disks as well as remove some fatty tissue caused by prolonged steroid use. He is able to walk with a walker. We are heading into the doctors this coming Thursday and we are a little worried on what to expect. Looking for advice or feedback on anything we should look into at this point? My dad has a great attitude and lives life to the fullest! Thank you for any help you can provide!
Any treatments left?: Good afternoon... - Advanced Prostate...
Any treatments left?
He can have another round of Xofigo, perhaps with Provenge. After Jevtana, perhaps rechallenge with Xtandi? Any clues from a metastasis biopsy?
Thank you, his PC was discovered throughout his bone marrow at dx. throughout the majority of his bones. A rechallenge with xtandi may be better option.
Tall_Allen , Hello- dad’s liver biopsy came back 2 weeks ago through Caris molecular testing and “revealed strong androgen receptor and that he would benefit from either Xtandi or Zytiga again” per MO. After one week, his labs showed that his bone marrow appears to be improving, ( was diagnosed with prostate cancer from his bone marrow 2 1/2years ago and metastasis throughout )PSA was not in yet. Question -his oncologist would like him to consider adding Xtandi to the Zytiga next week to improve the effectiveness of his response. He is late stage cancer, mind is good, body is weak and still struggles with low back pain. I have not seen any studies that show benefit of using enzalutamide with abiraterone He is on 1/2 dose zytiga. She does not want to continue Lupron at this time. Thank you in advance for your thoughts.
I don't understand why Lupron would be discontinued. Can you explain?
No, I did not question the oncologist. Just a side- She specializes in breast cancer. It was a quick televisit.
Perhaps you might be better off with a urologic oncologist. Lupron is never discontinued because even the smallest amount of testosterone can activate the androgen receptor after castration-resistance has set in. Combining Xtandi and Zytiga has been found to have no extra benefit on the average.
Has he qualified for any of the other trials available? I'm on my second trial currently. My first trial lasted 2 years, I am now into my third month of a new trial. The results after his 8th infusion of cabazitaxel is disturbing. I hope things will turn around for him
He has not qualified for any trials because his hemoglobin has consistently been below 9. He has an aggressive cancer and it seems that we can’t get this PSA down. It is so stressful!
Thank you, we do to! The Jevtana we consider a successful intervention. His PSA although high has remained relatively steady for four months extending his life and allowed him to have significantly improved pain and “the best summer of his life.” Best to you on your trial!
There is also LU-177 available outside the US and paid for out-of-pocket.
Just throwing that out there though I realize that's not an option for some.
He'd also have to get PMA PET and FDG scans to check to see if he is PSMA avid.
Quite a few people on the forum have had this treatment so there are posts about their experiences.
We have read great things about this treatment, unfortunately he is not well enough to travel outside the US.
Check with Tagawa at Cornell, he has a Ac-225 trial going. not sure if your dad would fit. Also Tulane has a Lu-177 trial but also not sure. I am currently in New Delhi and will be home Friday. ( Lu-177) Best of luck to you . PSMA scans are offered on the west coast two locations. I went to UCLA. It is cash up front just under 3k, plus travel.
MSK in NY is offering diagnostic PSMA scan for $7500. You can travel to UCLA first class from east coast and still spend less than that.
If cancer family history get genetic tested looking for mutated genes.
Opens up other approved treatments.
2Dee
I know I conflict with some on this site, but the fact is your father is extremely ill, and at some point, one has to seriously think about continuing on with living, given the pain and the fact his life has now become a big pin cushion.
It is the ugly truth of all of our battles in this war, we are all going to lose our lives, either thru the cancer, some side effects or our bodies just imploding.
I have watched many men in their final days and would NOT wish this end on anybody.
My view is better to end one's life in control and you making the final call in the war, and not let prostate cancer win by beating you to death, as is so often the case.
It is extremely difficult for family and friends to witness the demise of a loved one of prostate cancer, but my guess is that he has already reconciled himself to his dying, so focus should be made to listen to him and ensure that what he wants is what is carried out. It is now beyond a return to anything considered normal.
We spend little time in dealing with death in our society, instead drag our loved ones thru hell and back by having the medial gurus shove every possible treatment into a body that is shot.
He has live a long life so remember that and let him know that if he wants to give up, that he has your love and support to let go.
So sad, but happens so often. Best wishes in the most terrible of times for you and your family and your dad. He has been a warrior and by the records of his treatment, will surely help others who follow. That is what I preach and why I am so in support of all men to get on at least one drug trial if they can. We may not save ourselves, but might just help to save our sons and grandsons!!!
Thank you billyboy3 dad switched hospitals and MO's in March and got a port in April which has saved his battered arms and much time and energy from hospital staff. We as a family speak about death openly when it comes up as dad is a man of great faith and yes-he is reconciled to dying/ passing to the next life.
In March, His last MO gave him days to weeks and dropped him to hospice, his labs were stable but he had some disease progression. Dad took control and told us that he had more in him and wanted to fight, he had just been working 2 weeks prior. We found another MO who was shocked at what was told to him- that was. 6+ mo ago Since then -chemo/ radiation has decreased his pain to manageable levels, he has read his favorite books, swam in the pool with his grandkids, went on two weekend vacations, had lunch with close friends, dinner with family, advised work colleagues, and enjoyed many homemade meals and conversations. We are so grateful for our local hospital being so thorough and caring making sure dad's treatment is never worse than the cancer burden.
Taking one day at a time for now. Dad is filled with gratitude for each moment of the day never knowing what tomorrow holds. Thank you for taking the time to write and for your beautiful advice. Prayers for continued strength, peace and wisdom for you, my dad and all on this journey.
I have the the same genetic defect that killed my father. I lived with him and was his caregiver for the last 6 months of his life. Dying this way is a horrible way to go. One of the first things I did when diagnosed was put my affairs in order and designate willing friends with jobs after my passing and leading up to my passing. One of my strongest willed friends has accepted the job of ending my life when I say I am ready or when I become uncommunicative. Thank God for the beautiful, supportive friends in my life.
"My dad has a great attitude and lives life to the fullest!"
I applaud your Dad's attitude and I hope he keeps it till the end. God Bless him and tell him he's my kind of guy.....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 09/30/2020 5:02 PM DST
Thank you! My sister 4girls on this post describes my dad so well. We appreciate the thoughts and prayers as we continue to battle on this journey!
So very sorry to hear about your Dad.
He's a lucky man to have such a loving family by his side.
I truly hope his doctors can come up with something else to help.
If they can't, then sadly you might need to consider BillyBoy's sound advice.
However before you go down that path you might be interested in reading this genuine PUB MED case report about a patient with what many consider to be the worst cancer of all, terminal pancreatic cancer. The patient appears to have made a full recovery after stopping his palliative chemo due to treatment intolerance and switching to long term consumption of two supplements instead.
There is absolutely no scientific proof that the supplements helped him, but they certainly didn't hurt. They were relatively inexpensive and could be taken at home.
The doctors who wrote the report admit they couldn't completely dismiss the possibility that the supplements might have helped.
They even went so far as to suggest it would be interesting to do a clinical trial of chemotherapy followed by long term consumption of the supplements he took.
Until such a trial is done we will never know for sure.
Some on this forum might claim this is giving "false hope", but I suspect the patient in the case report might disagree.
Sure it's a longshot, but it might be worth trying if there are no other options left.
PUB MED case report titled "Unresectable Pancreatic Adenocarcinoma: Eight Years Later". ncbi.nlm.nih.gov/pmc/articl....
Best wishes
Dave
Dave, we appreciate the case report and best wishes. Thank you for taking time out of your day to respond and help us. Best wishes to you!
Your dad might benefit by having PsMa Ga68 PET + CT scan which may indicate his Pca could be reduced by Lu177
Later this morning I am travelling to Sydney to get more Lu177. I have fought Pca since diagnosis in 2009, and Lu177 worked better than EBRT, continued ADT, more IMRT, Cosadx, Zytiga, Chemo. But I have managed to keep Psa max below 50 for past 11 years.
I have had good QOL for all this time and have been able to keep cycling 20km a week.
With a high Psa and limited mobility, your dad may find it all too much to travel to Germany to get Lu177, which is what many men in USA are doing.
There may be a trial on in USA for Lu177.
Patrick Turner.
There is but one choice PCSPES and DES no more than 2mg.
Thank you! We plan to find out.
I am glad to hear you are doing so well. 🙌👍Safe travels to Sydney!
Thank you! We plan to find out.
I am glad to hear you are doing so well. 🙌👍Safe travels to Sydney!
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