Prognosis for Stage 4 Metastatic Prostate Cancer
Good afternoon, and thank you to any one in advance who is reading this and is able to offer any insight/similarities with their journey.
My dad (68 yrs) started experiencing crippling pain in his back this past May, that led to him being almost completely immobile. He was ultimately diagnosed with Stage 4 metastatic/advanced prostate cancer, with metastases to his pelvic and abdominal lymph nodes, as well as to his bones. His Gleason score was 9 at the time of his biopsy, and his PSA level was 800 ng/ml.
For treatment, he has received a total of three shots of Luteinizing hormone–releasing hormone (LHRH) which he will receive indefinitely, is presently taking Darolutamide (Nubeqa), and underwent 6 cycles of chemotherapy (Docetaxel) which he completed in December. They did a round of scans halfway through his chemo and told us that although the cancer seemed to be responding to the treatment (thank goodness!), it was incurable and will eventually find its way around the Darolutamide, hormone therapy and chemo. After chemo my dad's paralyzing pain was reduced to what he described as mild discomfort, which was a huge relief. His PSA settled at 5 ng/ml in the end.
About a week ago, my dad sat me down and said that he did not want to worry me, but admitted that pain seems to be coming back in a way that is progressive and more continuous. He is really worried he is going backwards, but this has not yet been confirmed and for now we are just trying to manage the pain. He has another round of scans (CT, bone scan and blood work) scheduled for next week, and now I am feeling concerned with what they may find.
I am not really sure what to ask, or how to ask, but I am just wondering if there is anyone who can give me some insight on whether they have had a similar experience with pain returning after chemotherapy, and how they managed it.
Finally, my dad's oncologist has been hesitant to offer my dad an honest prognosis, and just keeps saying "it depends". My dad is 68, and does have a history of congestive heart failure (2017), but is healthy otherwise (no diabetes, not overweight, gave up smoking 20 years ago). I know it may potentially be difficult news, but would anyone looking at the information I provided be able to let me know honestly what they think his chances are at living another 5 years or more?
Thank you again, Phil
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Yes, absolutely it's between you and your medical team.
Since my treatment has kept my PC totally inactive for 2½ years now (undetectable PSA), my onco team and I are happy to hold chemo in reserve for the future, rather than using it now when there seems to be nothing active for the chemo to fight (maybe a relatively few deeply dormant cancer cells hiding out among billions of healthy ones).
The videos I watched about the triple treatment referred, I think, to castrate-resistant metastatic prostate cancer or non-oligo-metastatic PC, but I might be misremembering, and also, of course, I'm a layperson as well.
I’m from NE Ohio who r you seeing your doing great Dave
Dr. Scholz put it this way. Chemo represents another path to deal with the cancer cells, by disrupting it's DNA etc. Intuitively, it should enhance the cure rate. So perhaps it will reduce that 10%? Is it worth it? Perhaps that is a matter for the patient and his medical team.
Dont mind me. I am just another layman trying to make some sense of the whole thing.
I think chemo with the up-front "triple treatment" for stage 4 is used only if there are lots of metastases and/or the cancer has become castrate-resistant.
For castrate-sensitive oligometastatic prostate cancer, I don't think chemo would make sense at the start (radiation + ADT + an androgen-reception inhibitor like Apalutamide get the job done), but interested to hear from anyone who's seen otherwise.
Look Into Radium 223 if bone Mets else Lu 177
On 223 after xtandi failed in 12 months
I've been stage 4 for 10 years after being diagnosed at 52. Had too many treatments to list all. I no longer have a prostate which was removed at 52 years old with metastatic bone cancer and a Gleason score of 9. Have the worst type of aggressive prostate cancer, I was told. Here I am 10 years later Going strong. I'm currently on Jevtana and prednisone and have had about 25 rounds at 3 week intervals. The only major side effects is fatigue. The most pain comes from the nuelasta shot the day after. I have a great team of doctors here in NE Ohio and a strong mind. I will die with it and not from it. By the way, my PSA sits at 30 and it goes up and down like a roller coaster.
Apparently there is a study now by Xtandi. That found that the recurrent rate at 5 years is
10% if treated with Xtandi plus ADT
20% if Xtandi alone
30% ADT alone.
For the 10% after 5 years they can go on to other treatments.
There is as yet no study result that includes chemo as the third leg of the triplet. But doctors do seem to believe there is benefit. How much?
We all wish they do the study.
Dont mind me. I am just another layman trying to make some sense of the whole thing.
Phil, you might set up a phone consult with Rossi at California Proton.
I am about to be 77 in a few months!
Have been dealing with prostate treatment since 2012, 45 rounds of radiation and Lupron injections. 2021, my PSA begin to start increasing, my Oncologist who has been treating me since 2012, he did biopsies and found nothing, we waited a few months, checking each month, my PSA continued to rise, after a couple months, I received an emergency call and was scheduled for Hemotology, had several body scans, brain scans. Cancer had spread up the left side of my body to my head, fortunately had not touched my brain. Consultation resulted in me having to choose an oral treatment that I take myself at home: Abiraterone 1000mg daily and Prednisone 5mg daily everyday, can’t miss a day. I’m still taking Lupron injections every six months: side effects are fatigue, like of engery, weakness mostly. The Abiraterone meds spikes blood pressure, therefore I had to began blood pressure meds. These meds have benefited me tremendously. There are occasional dizziness or light headed side effect, but nothing serious. It is suggested to take theses meds during wee wee hours to minimize discomfort. If the meds are difficult to tolerate you can request a decrease in strength. After three months of being on 1000mg of Aberiterone, it was working so well, my request to decrease to 750mg was agreeable. My PSA went from 356 to 38.6 in three months. I have been diagnosed as Stage IV Prostate Cancer, metastasis incurable. Your Dad can benefit from the proper treatment.
I went for a second opinion at Johns Hopkins and that doctors said the average was 7 years. He then said, but that does not at 7 years people die, rather they are still alive and might start having issues again. That was before triplet therapy was adopted as the standard of care. Remember, that the stats on the internet are mostly based on the SEERS data which is mostly just ADT and gave stage 4 prostate cancer patient 1-3 years. My doctors immediately refuted that data as old and out dated based on advanced with treating stage 4 prostate cancer in the last 6 years. That was stated in year 2022. I was told not to consider that data and that they could hopefully just treat my disease as chronic illness and that living with this disease and dying of something else is more probable. Again, everyone is different and responds differently to treatment. Some people never achieve undetectable PSA and the stats are different for those individuals. But I speak to many men that have been fighting this disease for 8+ years and their PSA is like 50. So, I think it depends on how well the cancer is controlled. I asked for Radium 227 but my doctor said Radium 227 is reserved for Castrate Resistant patients. So, I hope I never need Radium 227 and remain castrate sensitive for many many years. On another note, I recently joined a clinical study that does a different kind of genetic/genomic testing for mutations. It was a saliva test. Mine came back with nothing again. I previously had genetic and genomic blood testing and all came back negative for any known mutations (i.e., BRAC1, BRAC2 etc). Lastly, my Nurse Practitioner that exclusively works with cancer patients that I see at the Life With Cancer group says that 10-15% of people with stage prostate cancer and some other cancers - the cancer never returns. Let us pray we are in that group. God Bless everyone - stay string, stay positive. Have a purpose to live and fight. For anyone struggling, I pray the cancer stands down and dies from any treatment you may be facing. Die cancer die!!!!