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Update - Advanced Metastatic Prostate Cancer

FinishingGrace
Posts: 83
Joined: Apr 2017

Hello everyone,

Recently my neighbor, 59 years old, received this diagnosis. He lives alone. No support system. He does not understand what is happening to him and asked me to step in and help with doctor's visits, managing meds, and generally helping him understand what he is facing.

He recently was discharged after at 18 day stay at the hospital. Biggest concern was kidney failure and creatine levels were at 19.9. The prostate was found to be significantly enlarged with a tumor on the left side. PSA is 606. Biopsy confirms stage four.

Metatisis sites determined by a Cat Scan of the abdomen are seminal vesicules, bladder, kidney, pubic bone, left femur, possibly left lung. Pet Scan to happen this week and I believe the scan may reveal more sites.

I took him to his first oncology appointment on Friday. The doctors have not told him the full story and only break more bad news to him a little at a time. When he was in the hospital they mentioned it was in his pubic bone and femur. At the appointment two days ago they told him it was also in his bladder and seminal vesicules.

He completely shuts down and really isn't able to hear them. I ask the questions.

The oncologist has a 'treatment plan'. Hormonal therapy to remove all testosterone from his system in hopes it will slow down the cancer growth. They also want to start him on chemotherapy. One infusion every three weeks for the next 5 months. I think the chemo med started with a t, but I did not write it down. He also said the cancer was extrememly aggressive with a very high gleason score. He did not mention the number and I didn't ask for some unknown reason. :(

Oncologist said he was 'optimistic' that my neighbor would at least survive through this initial treatment plan. He did not appear 'optimistic' to me at all.

I work full time and run my own business so I have been staying up very late at night researching prostate cancer. Sadly, I am familiar with other cancers as I have walked this path with more than one person in my family.

As I'm researching I'm wondering if it's possible that palliative care is my neighbors best option and that bringing hospice in at the earliest possible point may greatly enhance his quality of life. The oncologist did tell us that if he makes it through the chemo they will continue with the hormone shots and that people sometimes live for a couple more years. They do consider this palliative care.

The oncologist said he is not a candidate for radiation (there's a proton beam center right here in town) because of how far the cancer has spread. The doc also said that the chemo is going to make him quite ill and he will lose all his hair. I think he should have the right to know all of this so he can carefully choose the option that makes most sense for him.

I also think he should seek a second opinion. He is relying on me completely. After the oncology appointment he asked me if I understood everything the doc said. I told him I did. He said good, because he heard a couple of bad things and he can't handle knowing anything else right now. But he's glad I know...

Would appreciate your opinions and differing perspectives so I can be as much help to this man as possible. Keep in mind that his treatment options are limited because he is on Medicaid and currently has zero income. 

Kindness appreciated.

FinishingGrace
Posts: 83
Joined: Apr 2017

I was at the appointment when the oncologist stopped the prednisone. I did ask him why and he just said, "He doesn't need it anymore". I objected to it not being tapered down rather than stopped suddenly and he said the dosage was so low he could stop it with no problems.

Not true.

I was not at the blood work appointment this past Wednesday and a different oncologist put him back on the prednisone when he described the horrible side effects he's been having since it was removed. They also gave him a pretty strong antidepressant. He told me tonight that he was already feeling better and he attributes that to the prednisone. 

He had a PET scan today, but they didn't do a full scan like they did the first time, only the torso. I just don't get it but that should show something of the state of the disease now. He's already feeling anxious about the appointment on Wednesday, as you can imagine.

FinishingGrace
Posts: 83
Joined: Apr 2017

Last day of chemo was Wednesday. 

PSA down to 41.7. PET Scan shows the PCa has not spread to any sites beyond the bladder, pubic bone, femur and rib (all sites we knew about from the beginning). They did not shrink, but they did not get any larger and there are no new areas. The doctor was practically dancing around the room as he exclaimed how great everything has turned out. 

Then he wouldn't answer any of my questions. He seems like a nice guy but just doesn't tolerate questions well. Of course, my neighbor doesn't really want to know anything unless it's good news so the more questions I ask, the more stressed he becomes. I finally just stopped talking.

If it were me I would have fired this guy after the first week and worked with someone who explains things throughly and answers my questions. The fact that he won't be explicit on any level makes me feel like he isn't telling us everything. It's driving me absolutely bonkers.

He 'hopes' the PSA will continue to drop even though there will be no more chemo. The Lupron shots every 3 months will continue and they start some sort of monthly infusion for the bone mets in September.

Totally in this for my neighbor, completely D.O.N.E. with this oncologist. Very happy for my neighbor that the treatment has stopped the PCa in it's tracks and praying this lasts for a long time before it starts back up. 

VascodaGama's picture
VascodaGama
Posts: 3191
Joined: Nov 2010

Grace,

I am very happy for you and your neighbor. I wish you live next to me too. You have been extraordinary.

The end results of your efforts are at sight; Lesser cancer and lesser side effects. The PSA may go down further as many cells will die in its life cycle that last about six months. I wonder what may be his nadir. The infusion for bone loss/mets may be Prolia or the cheaper Zoledronic acid. This newer drug will also cause side effects with the latter being more nasty than the former. Your neighbor may feel confusion at occasions. I would recommend him to get a starting DEXA scan to compare with the results after the treatment. Apart from finding any osteoporosis condition, one would know if the suffering from the side effects were worth it.

 

Best wishes for more improvements,

 

VG

  

FinishingGrace
Posts: 83
Joined: Apr 2017

I will find out about this new infusion this coming Wednesday. What it is and what are the side effects. Do you have a preference of Prolia or Zoledronic acid? Are there significant differences in effect or symptoms?

I'm noticing more and more confusion on his part along with some beligerance. He is refusing to take some of the meds the oncologist prescribed. He is picking and choosing which meds to take on which day. 

I will also ask about the DEXA scan. Thanks so much!

VascodaGama's picture
VascodaGama
Posts: 3191
Joined: Nov 2010

Sincerely, I think that both drugs do exactly the same job and got equal results in terms of outcomes. Such results were verified in a clinical trial which were reported at several sites. The pro-Prolia writers comment that Prolia is better but it is not true. The big differences in the drugs are that Prolia is 3% more efficient in delaying the process in broken bone (due to cancer activity) and the Zoledronic acid is better in terms of avoiding accidents with osteonecrosis of the jaw (a high risk when dental care is required). Prolia requires taking a calcium and vitamin D supplement as necessary to treat and/or prevent low blood calcium levels. Zoledronic acid requires the patient to be well hydrated during treatment to protect the kidneys.

In regards to treatment costs Prolia is more expensive but when adding the costs of supplements and the number of infusions (time duration to get equal results) both treatments have similar end costs. A study on the costs has been done by a consultant to help the UK NHS decision to include Prolia in its system, which found it to be more expensive. The study was sponsored by Amgen Inc. USA, the owner of Prolia;

http://www.crd.york.ac.uk/CRDWeb/ShowRecord.asp?ID=22011000463

The side effects differ as the two drugs use different path ways for metabolism. Please refer to the following links;

https://nos.org.uk/about-osteoporosis/treating-osteoporosis/osteoporosis-drugs/denosumab-prolia/

https://nos.org.uk/about-osteoporosis/treating-osteoporosis/osteoporosis-drugs/zoledronic-acid-aclasta/

Best,

VG

 

FinishingGrace
Posts: 83
Joined: Apr 2017

Very helpful. Will look into it and find out which one he will have.

FinishingGrace
Posts: 83
Joined: Apr 2017

There has been an unfortunate turn of events and I will no longer be involved in my neighbors treatment or overseeing his meds.

He recently asked me to make some changes in his medications, in order that he might have greater access to opiates previously prescribed, without his doctor knowing. Obviously, I refused. I cannot and will not make any changes to any medications, much less high powered pain meds that if mixed with the anti-depressants that have been prescribed, could literally kill him.

Early today he visited the oncologists office without my knowledge, was disruptive with wildly inappropriate emotional behavior, and made claims against me and my character regarding the management of his meds and/or withholding of medications. Thankfully, I have kept in close contact with their triage nurse as well as the oncologist since he started asking me to switch up his meds, so they know the truth. They informed me of what happened today and my decision was painfully clear.

I am deeply sorry for what he is going through, but I am no longer able to assist him if he is going to lie about me or spread falsehoods about how I have managed medications. 

However, I am doing great and am confident that I did my very best to help someone who needed it, and it was the right thing to do at the time. I have absolute peace about stepping away at this point from any type of medical assistance. I wish him the best and will continue to try and be a good neighbor to him. My plan is to continue to visit with him occasionally, take food when possible, and offer the occasional ride when I'm available. If you pray, please pray for him.

I did want to take a moment to tell each of you how honored I have been to be a part of this community, even if for a short time. The courage, wisdom, and the compassion shown here, along with rigourous and healthy debate has been a blessing to me in many ways. Each of you deserves a medal for how you help and encourage each other. This group is a fine example of everything a man should be.

My very best to all of you! Thank you for your support of my efforts. God bless! :)

GeneRose1's picture
GeneRose1
Posts: 64
Joined: Aug 2016

Grace, I've been following your neighbor's journey and am very disappointed with this development. You did everything and more and should certainly be at peace with all you've done for him. A positive take-away from all this is that you now know more about PCa than most Americans and will definitely be in a better position to help others in the future. You inspire us all and I hope you'll continue to contribute to this forum. Best/Gene

VascodaGama's picture
VascodaGama
Posts: 3191
Joined: Nov 2010

I pair my opinion with Gene's above. Your neighbor knows and is very able of continuing his treatment as recommended by his physicians. You doing well in restricting the help you provide to matters other than the treatment. His behavior was incorrect and probably can get worse. 

Lupron effects may be behind such attitude. Some guys on HT become excessively aggressive occasionally, even with suicidal behaviorism and one cannot change it. I once experienced such aggressive behavior when shopping. It was momentarily but surprised me. I managed to restrain from going further because I knew that at that moment I was experiencing a side effect of HT. I mentally managed to counter act controlling the effect. A third person intervention could easily trigger the worse.

I hope his behavior improves and that one day he realizes how much he owes you for the help you have provided.

Thanks for the help that your posts have provided to us all in this boat.

VG

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