Update - Advanced Metastatic Prostate Cancer
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.
Comments
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Systemic approach
Grace,
Welcome to the board. I want firstly to thank you for the help you are providing to your neighbor. It is very nice of you to intervene in his behalf.
I think that the PET scan will had more locations of the cancer but as you describe above, one more affected location would not alter his status (stage 4) or conventional treatment options. Surgery and radiation would not help when the cancer spread so widely. Palliative hormonal plus chemo (Taxotere) is the route to take. Surely these do not cure but manage to hold the bandit during a long period. The problem is the side effects that may turn his quality of life very sour.
He may need more care to treat the side effects than the cancer. This will put you on a continuous look after if he doesn't adapt to the symptoms. I do understand his wish in not knowing the extent of the illness but at least he should be informed about the symptoms and what to do when they occur. He is young so that his body may accept naturally the chemo blow. However, this bandit may start damaging other organs which would require additional treatments.
There is a newer therapy for systemic cases with wide spread involving radiopharmaceuticals which have shown positive results in patients whose tumour have particular receptors. The most famous (Lu177 PSMA) is already in practice in Germany and can be accessed in the USA via clinical trials. This is the therapy that your neighbor could try getting involved. Clinical trials are safe and free of charge, and it includes after care services. I would discuss with his doctor to check for possibilities in put him on a trial for Lu177 (or combination). You can also get a second opinion from an institution involved in the trials, contacting the person in charge indicated in the link below;
https://clinicaltrials.gov/ct2/results?term=lu+177+prostate&Search=Search
Best wishes and luck to your friend.
VGama
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Bad news indeed
Your write up gives a good picture of the status of your neighbor and his prospects are indeed dour. I agree (not an MD) that the treatment plan (hormone therapy + six rounds of taxotere) that the oncologist has proposed is reasonable considering the very advanced stage of the disease.
It is not unusual for a patient to shut down when hearing about cancer. You are doing a great service and I hope that your neighbor will eventually start to listen. Whether he is willing to face the extremely rigorous therapy proposed by the oncologist, or not and enter hospice care at some point, should be up to him. Considering his relatively young age, I speculate (!) that he could fight the disease for some time. Maybe even a long time, but his Quality of Life will suffer.
Again, thanks for your help.
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Thank you for the information
Thank you for the information about the clinical trial. I will look into it and ask about it at his first chemo treatment on Wednesday.
He did ask me the first question he has asked me so far. He asked what the side effects of the 'testosterone shot' would be. I explained to him that it was going to remove the testosterone from his system and there were some unpleasant side effects. I gently told him a few of them and he told me he couldn't hear any more. I also explained why it's a treatment. Completely broke down.
Cancer sucks.
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Somewhat similiarFinishingGrace said:Thank you for the information
Thank you for the information about the clinical trial. I will look into it and ask about it at his first chemo treatment on Wednesday.
He did ask me the first question he has asked me so far. He asked what the side effects of the 'testosterone shot' would be. I explained to him that it was going to remove the testosterone from his system and there were some unpleasant side effects. I gently told him a few of them and he told me he couldn't hear any more. I also explained why it's a treatment. Completely broke down.
Cancer sucks.
Grace,
I had an experience slightly similiar to what you describe about 4 years ago. A friend (70 at the time) was terminal with metastatic Prostate Cancer (PCa). His case differed in that he had had the disease already about 11 years at that time -- he had been through about every known treatment prior to my getting involved. He had grown kids, but all of them lived way out of state and could not come around much. I like you was the 'question asker,' med supervisor, etc (I lived about a mile from his house). And he also was by that point "disengaged," not paying much attention, and not very motivated. But he had great insurance and was highly educated.
You probably need to get social services involved, and certainly any friends or neighbors he has who will help.
The chemo drug is almost definitely Taxotere, but goes by a variety of names. It will weaken him profoundly, fast. But it can reduce PSA dramatically, at least for a time. Hormonal Therapy (HT) also is rough.
Quite frankly, despite his relative young age for a metastatic PCa patient, his prognosis is probably very poor. Demand that the oncologists explain what they mean when they say a treatment plan will work "for a while." They are making educated guesses, but often "a while" is code for a very brief duration. Demand honesty; do not accept vague generalities.
Hospice at some point will be necessary. The general tendency is to wait much too late for hospice to take over, with the objective of comfort over cure. there is no cure for metastatic disease with the multitude of involved organs that he has. My friend finally went to hospice, and died three days later.
Chemo and HT, despite how harsh and weakening they are, may get him to rebound an perk up for a time. But things don't sound good. Create a support network as fast as possible, even if the government has to help.
Abut two years later I got my own case of Stage II PCa, but at least I knew the lingo when I began reseaching treatments.
max
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Immunotherapy?
Hi,
Have you looked into this form of treatment yet? Looks like its promising for advanced cancers? Hang in their with your neighbor, it sounds like you are the only friend/confidant he has. You are to be commended for taking on this task, we need more people like you on this planet.
The American Cancer Society has a pretty decent article on Immunotherapy. https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/immunotherapy/what-is-immunotherapy.html
Dave 3+4
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I appreciate your insight
I appreciate your insight SwingShiftWorker and I have put strong boundaries in place because I tend to do too much when I make a commitment to someone. You make a very good point. For example, he missed an appointment this morning because I have decided that I am only going to take him to appointments for chemo as his oncologist is coordinating care. Tomorrow someone else is taking him for his Pet Scan. So I am trying to help in a real, meaningful, and compassionate way with good boundaries in place. He is a good person but has already demonstrated in a few ways that he would gladly let me do every thing for him if I would. I can't and I won't.
As far as nothing good coming from it for me? I disagree. I'm not doing this to get anything out of it. I'm doing it because I'm a Christian and want to actually obey the Bibles call to believers for us to 'do unto others as you would have it done unto you'. So I'm not worried about that.
I haven't looked into alternative therapies Clevelandguy, and cannot commit to doing so, but it's a good idea and I will ask the oncologist about it when we go for the first chemo appointment on Wednesday. Thank you. I'm also going to ask about a clinical trial VascodaGama suggested.
Thanks for the help and different perspectives. I'm grateful for each comment. His petscan is tomorrow and he will receive the results the next day at his first chemo appointment. I expect it to be a very difficult day for him.
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Hospice
OP: First, let me say that I think that think you're an amazing person to be willing to take on such a responsibility for your neighbor. It's a huge burden and I won't hesitate to say that you should find a way to relieve yourself of it because no good can come from it to you. I know that's selfish and it sounds like you're the kind of person who would never say such a thing. So, I'll say it for you.
In this regard, I think you should determine if neighbor's medical insurance includes the services of a medical social worker. My mother was in Kaiser SF and they had a special Community Care program to provide assistance to aged or home bound patients. Your neighbor may qualify for such services.
My mother and father both also received hospice through Kaiser, which generally is not provided unless the patient is expected to die w/in 6 months but, as Max noted, hospice is often offered too late.
Like Max's friend, my father (89) died within days of being admitted to hospice. My mother (101), however, was recommended for hospice early and died almost a year after it began for her; largely because my mother was a tough old bird who outlived everyone of her generation except an aunt of mine who is still living but was/is 9 years younger than my mother.
In any event, given all of the problems your neighbor is having the the likelihood that he will eventually die from prostate cancer or from other causes shortly, you should also consider contacting a hospice provider to see if they will take his case, since the level of care that he will need in the coming months is likely to very high; probably much higher than you are capable of providing without causing your business and personal life to suffer.
Good luck and best wishes to both you and your neighbor!
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No Good?FinishingGrace said:I appreciate your insight
I appreciate your insight SwingShiftWorker and I have put strong boundaries in place because I tend to do too much when I make a commitment to someone. You make a very good point. For example, he missed an appointment this morning because I have decided that I am only going to take him to appointments for chemo as his oncologist is coordinating care. Tomorrow someone else is taking him for his Pet Scan. So I am trying to help in a real, meaningful, and compassionate way with good boundaries in place. He is a good person but has already demonstrated in a few ways that he would gladly let me do every thing for him if I would. I can't and I won't.
As far as nothing good coming from it for me? I disagree. I'm not doing this to get anything out of it. I'm doing it because I'm a Christian and want to actually obey the Bibles call to believers for us to 'do unto others as you would have it done unto you'. So I'm not worried about that.
I haven't looked into alternative therapies Clevelandguy, and cannot commit to doing so, but it's a good idea and I will ask the oncologist about it when we go for the first chemo appointment on Wednesday. Thank you. I'm also going to ask about a clinical trial VascodaGama suggested.
Thanks for the help and different perspectives. I'm grateful for each comment. His petscan is tomorrow and he will receive the results the next day at his first chemo appointment. I expect it to be a very difficult day for him.
I get where you're coming from.
However, caring for a dying person (I did it for both of my parents) is an emotionally traumatic event that doesn't just happen in a flash but drags on and on as the person you are caring for deteriorates and eventually dies. It affects and changes you, not necessarily in a good way.
That's what I mean by "no good can come from it for you" but if you find solace in the fact that you are being a "good Christian and doing God's work," fine, but it will come at an emotional cost that you need to be prepared to pay.
However, it sounds like you are ready to do that. So, all I can say again is good luck to you and your neighbor both.
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Taxotere chemo
Others may know a lot more, but from my reading of taxotere chemotherapy one can expect a 'crash' a few days later. Moreover, the later sessions will be worse compared to the earlier ones. There are some 'tricks' though to help with the side effects. Hopefully the doctor(s) will provide appropriate guidance.
The side effects associated with hormone therapy typically show up after a month or so.
I wish you both strength with the first round of chemo tomorrow (5/3)
PS: Two links with a lot of advice:
The first one from another patient forum, the second one 'official'
http://www.healingwell.com/community/default.aspx?f=35&m=3487897
https://www.cancer.org/content/cancer/en/cancer/prostate-cancer/treating/chemotherapy.html
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Thank you. I understandSwingshiftworker said:No Good?
I get where you're coming from.
However, caring for a dying person (I did it for both of my parents) is an emotionally traumatic event that doesn't just happen in a flash but drags on and on as the person you are caring for deteriorates and eventually dies. It affects and changes you, not necessarily in a good way.
That's what I mean by "no good can come from it for you" but if you find solace in the fact that you are being a "good Christian and doing God's work," fine, but it will come at an emotional cost that you need to be prepared to pay.
However, it sounds like you are ready to do that. So, all I can say again is good luck to you and your neighbor both.
Thank you. I understand better what you meant.
I am approaching the 2nd anniversary of my father's death. You are right. My mom and I cared for him until his last breath which was caused by bladder cancer. I will never be the same.
The emotional cost here is very high. The cost of leaving my neighbor without treatment, human contact, food, or any other resource would be infinitely higher.
Thank you for the well wishes. Deeply appreciated.
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Thank you for those links.Old Salt said:Taxotere chemo
Others may know a lot more, but from my reading of taxotere chemotherapy one can expect a 'crash' a few days later. Moreover, the later sessions will be worse compared to the earlier ones. There are some 'tricks' though to help with the side effects. Hopefully the doctor(s) will provide appropriate guidance.
The side effects associated with hormone therapy typically show up after a month or so.
I wish you both strength with the first round of chemo tomorrow (5/3)
PS: Two links with a lot of advice:
The first one from another patient forum, the second one 'official'
http://www.healingwell.com/community/default.aspx?f=35&m=3487897
https://www.cancer.org/content/cancer/en/cancer/prostate-cancer/treating/chemotherapy.html
Thank you for those links. Taking a look tonight.
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We were at chemo from 9:30
We were at chemo from 9:30 until 3:30. Exhausting day, but got some good news.
They have revised the number of metastatic sites. Petscan showed seminal vessicals, bladder, pubic bone and a rib in the upper abdomen. It isn't in the femur, kidneys and lung as they first suspected.
Oncologist believes that he has a good chance of extenting his life substantially and that is the route he has chosen to take. Treatment went well and he feels good today. We will see what the next few days bring. Thank you so much for the information and encouragment.
I do not necessarily believe what the oncologist is saying but it's not my call and I'm hoping for the best for my neighbor.
PSA is 606
Gleason: 9
Stage 4
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Scary numbers . . .FinishingGrace said:We were at chemo from 9:30
We were at chemo from 9:30 until 3:30. Exhausting day, but got some good news.
They have revised the number of metastatic sites. Petscan showed seminal vessicals, bladder, pubic bone and a rib in the upper abdomen. It isn't in the femur, kidneys and lung as they first suspected.
Oncologist believes that he has a good chance of extenting his life substantially and that is the route he has chosen to take. Treatment went well and he feels good today. We will see what the next few days bring. Thank you so much for the information and encouragment.
I do not necessarily believe what the oncologist is saying but it's not my call and I'm hoping for the best for my neighbor.
PSA is 606
Gleason: 9
Stage 4
I think that you have the good common sense to know this already but those are VERY scary prostate cancer numbers.
Add the spread of the cancer to the bladder -- which is a more deadly form of cancer which allows it to spread to the kidneys and from there to the vascular system -- and it frankly does not bode well for your neighbor.
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I agree.Swingshiftworker said:Scary numbers . . .
I think that you have the good common sense to know this already but those are VERY scary prostate cancer numbers.
Add the spread of the cancer to the bladder -- which is a more deadly form of cancer which allows it to spread to the kidneys and from there to the vascular system -- and it frankly does not bode well for your neighbor.
I agree.
It's why I said what I did about not believing the oncologist. I'm not an expert on prostate cancer but I'm also not the dullest knife in the drawer. I'm looking at forums and guys are worried about a PSA of 10 and I'm thinking....uhhhhh....my neighbor has a bleeping 606! If a 10 is high then we are in trouble.
If nothing else it makes me incredibly thankful for my dad's oncologist. Dr. Naot had the most amazing care and compassion but spoke the truth and allowed my dad the beautiful opportunity to back away from treatment that was ineffective and live out his life without pain and his dignity intact.
Also, can someone explain to me what the numbers are that people are using that look like 2 + 3 or 4 + 3. I don't understand what that references.
Thanks!
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Gleason Score CalculationFinishingGrace said:I agree.
I agree.
It's why I said what I did about not believing the oncologist. I'm not an expert on prostate cancer but I'm also not the dullest knife in the drawer. I'm looking at forums and guys are worried about a PSA of 10 and I'm thinking....uhhhhh....my neighbor has a bleeping 606! If a 10 is high then we are in trouble.
If nothing else it makes me incredibly thankful for my dad's oncologist. Dr. Naot had the most amazing care and compassion but spoke the truth and allowed my dad the beautiful opportunity to back away from treatment that was ineffective and live out his life without pain and his dignity intact.
Also, can someone explain to me what the numbers are that people are using that look like 2 + 3 or 4 + 3. I don't understand what that references.
Thanks!
Although the description of the total score descriptions is incomplete, Wikipedia has a pretty good explanation of the basic Gleason grading methodology, which you can find here:
https://en.wikipedia.org/wiki/Gleason_grading_system
Basically, the 1st score is the most commonly found cell morphology (eg., normal vs cancerous rated from 1 to 5) and the 2nd score is the next most commonly found cell morphology in the sample(s). Add the 2 together and you get the total score.
For odd Gleason scores (7 or 9), a higher 1st score (4+3 or 5+4) would be more concerning than a higher 2nd score (3+4 or 4+5), simply because the cancer is more pronounced. So, a more favorable prognosis might be justified for a Gleason 7 patient with a 3+4 rather than a 4+3 score. But for anyone with a Gleason 9 (5+4 or 4+5), I don't think there's any significant difference either way especially if there is already evidence of metastisis beyound the prostate capsule.
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Thank you.Swingshiftworker said:Gleason Score Calculation
Although the description of the total score descriptions is incomplete, Wikipedia has a pretty good explanation of the basic Gleason grading methodology, which you can find here:
https://en.wikipedia.org/wiki/Gleason_grading_system
Basically, the 1st score is the most commonly found cell morphology (eg., normal vs cancerous rated from 1 to 5) and the 2nd score is the next most commonly found cell morphology in the sample(s). Add the 2 together and you get the total score.
For odd Gleason scores (7 or 9), a higher 1st score (4+3 or 5+4) would be more concerning than a higher 2nd score (3+4 or 4+5), simply because the cancer is more pronounced. So, a more favorable prognosis might be justified for a Gleason 7 patient with a 3+4 rather than a 4+3 score. But for anyone with a Gleason 9 (5+4 or 4+5), I don't think there's any significant difference either way especially if there is already evidence of metastisis beyound the prostate capsule.
Thank you.
That explanation helps.
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Update on PSA
It was suggested I move this update here.
My neighbor is responding to the hormone and chemo. His PSA was down from 606 to 314 today.
This is good news, correct? They are going to test it every month.
Another question. I've done some reading in other threads and it seems that taking calcium may be contraindicated during treatment, but I'm uncertain of that. They warned him about something with his jaw/teeth with the treatment plan, so you would think he would want to take calcium.
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Good news indeed
Grace,
Please note that we are not doctors and do not own this forum to give you instructions. You do what you like. However, I think that for the sake of the many reading our exchanged discussions (even to those newbies not participating) the fluidity of the conversations can be understood better and turn beneficial to you and the reader (who could be confronting a similar problem).
I still do not know the full scope of your friend's treatment protocol. What does it include?
The treatment for metastatic PCa in bone typically includes bisphosphanates like Fosamax or drugs that apart from strengthening the bones also cause damage to the cancer, like Prolia, etc. But these adding concomitant treatments are not free of side effects. They are linked to osteonecrosis of the jaw. In any case, such occurrence is seen more often in guys that had taken the drug for long continuous periods. In the case of Prolia (denosumab), it is contraindicated in people with low blood calcium levels, because it uses calcium in its work with the osteoblast (to bone formation).
The lower PSA is great but expected. I believe the chemo has already killed many buggers. Let's hope for continuing improvements.
Do you know the results of other blood tests including the testosterone?Best
VGama
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Treatment...VascodaGama said:Good news indeed
Grace,
Please note that we are not doctors and do not own this forum to give you instructions. You do what you like. However, I think that for the sake of the many reading our exchanged discussions (even to those newbies not participating) the fluidity of the conversations can be understood better and turn beneficial to you and the reader (who could be confronting a similar problem).
I still do not know the full scope of your friend's treatment protocol. What does it include?
The treatment for metastatic PCa in bone typically includes bisphosphanates like Fosamax or drugs that apart from strengthening the bones also cause damage to the cancer, like Prolia, etc. But these adding concomitant treatments are not free of side effects. They are linked to osteonecrosis of the jaw. In any case, such occurrence is seen more often in guys that had taken the drug for long continuous periods. In the case of Prolia (denosumab), it is contraindicated in people with low blood calcium levels, because it uses calcium in its work with the osteoblast (to bone formation).
The lower PSA is great but expected. I believe the chemo has already killed many buggers. Let's hope for continuing improvements.
Do you know the results of other blood tests including the testosterone?Best
VGama
Hey VGama,
FYI
PSA 606, down to 314 after one chemo treatment and hormone injection
Gleason score has been placed at 4+4, they originally gave a combined score of 9
Mets to seminal vesicules, bladder, femur, rib. Large tumor on the prostate.
His treatment plan is straightforward. 5 months of Tasotere (I may not be spelling that correctly) given every 3 weeks. He has had a total of two chemotherapy treatments with the Tasotere so far. He is getting a hormone shot every 3 months. He received the first one at the first chemo treatment. I do not remember the name of the injection and the paperwork is at his house.
I specifically asked the oncologist about his testosterone levels this week and was told that had not been tested. I have not asked about his calcium levels but I will.
The nurse specifically warned him about osteonecrosis of the jaw so one of the meds you mentioned must be a part of the protocal.
Thanks for being such a help on this forum. Your support, knowledge, and encouragement is a blessing.
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Drug
Grace,
His chemo drug is Taxotere ("Tax-eh-Tear"), the most common conventional chemo given to metastatic PCa patients. I say "conventional chemo," because when Taxotere stops working, other, newer chemo-Hormonal hybrid drugs are used, specifically Jevtana and Zytiga.
Your friend's degree of metastasis is severe. Taxotere is harsh to endure, and its effects intensify with use (for nearly all patients). He will get weaker fast. I hope he is an inpatient now, given the urinary issues you discussed. Taxotere can extend life, sometimes significantly, especially if the HT drugs he is getting work well. But know that he is not curable in any scenario.
Know that his ability to function alone will drop off a lot, almost certainly. Plan accordingly. Profound weakness, sleeping all day, no apppetite, are all likely. When I was on combination chemo for Lymphoma years ago (not Taxotere), I was so weak at times I could not speak into a telephone held up next to my head. That is the kind of weakness I am speaking of.
It's great that one infusion cut his PSA in half. Between the chemo and the HT drugs, he might rebound and have a better period with quality of life.
http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx
max
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