Hi everyone.
So until this morning we were hopeful that Paul's Carbo Platin treatment is going well. But then we got a call from his doctor to say that his last blood tests show that his PSA has doubled from 125 to 250 within the last two and a half months.
We are so worried right now.
We thought that the liver had been getting better all the time; and maybe it is; but now the cancer seems to grow quite aggressively somewhere else.
What does it all mean?
Mel.
It may not mean that much at this point. It's one piece of information, but doesn't tell the whole story. There are some people who have PSAs that fluctuate at much higher levels and still managing the disease.
Is he currently taking any of the AR-based treatments such as primary ADT (lupron, Zolodex, etc.) or any of the second line such as Zytiga or Xtandi? If he has been off these agents for a while, sometimes the cancer can become more hormone sensitive again. In those cases, it's possible to go back on them and have success again for a while.
As far as the PSA test goes. When I consider any piece of information from a test, my question is always the same: How does this information effect my treatment plan? If the PSA test doesn't help inform your treatment decisions, I wouldn't be doing it. That's my opinion.
How is he feeling overall? How are his symptoms, pain, etc.? That would be the more important thing to me.
Keep fighting and hoping that you don't get discouraged. We're all pulling for you.
Hi Gregg59.
Thank you for your post.
Apart from fatigue, Paul doesn't have any symptoms.
Paul is only on ProStop, the three-monthly injection, and the Carbo Platin at the moment. And of course Prednisolone, Lexapro, Maxolon and another anti-nausea tablet of which I have forgotten the name.
With the liver improving all the time, we think that either it is just an unimportant fluctuation of the PSA level or that the cancer is growing somewhere else but at least leaves the organs in peace.
No, we certainly don't want this to affect the current treatment plan, especially not because Carbo Platin is working so well.
I guess we have to wait and see what scan showes.
Mel and Paul.
I would wait and see how he is feeling. Also I would not let one spike change treatment. We monitor my husbands Neuroendocrine Prostate Cancer by Chromogranin A. One week it went up by 150 points.. and a week or two later it was back down to about the same. This was during chemo. I know PSA is different but I sometimes think markers can be a little tricky. They are helpful, but I am not sure they are 100%. I would look for trends. I hope this helps give you some comfort. You could wait a week and do another PSA test.. or ask for a scan. Does the doctor want to keep doing treatment ?
Prayers and Hugs for you and Paul!
Paul could also have neuroendocrine cells since he has mets to the liver and has responded well to Carboplatin. Those neuroendocrine cells don't express the PSA so Chromogranin A is a better test for progression there.
That test may benefit Paul as well. But then it still comes down to the treatment and what you will do with the test information. Having more information doesn't help you unless it informs your treatment plan.
Hi SoftwareMom00.
Thank you for your message.
Paul is feeling fine, only fatigue as side-effect of the Chemo.
His PSA hadn't been taken for a couple of weeks - almost two months. So perhaps it has gone up slowly and to us it looks like a lot because we didn't see it going up all the time.
It is encouraging to hear that it mightn't mean very much at this point.
And, yes, we should ask for it to be taken again as well as for the scan. Well, the scan is going to be done at the end of this week.
Mel and Paul.
Mel,
I agree with what Gregg and Software mom said. I am wondering if they still did lupron shots during chemo ,and have they done a testosterone lab lately. I think I would want a 3 week repeat on the psa, or at least monthly to see what is going on there. I will keep You and Paul in my prayers
Dan
Hi Dan.
The doctors told Paul to continue with the three-monthly ProStop injections during Chemo. That is all he is taking for the cancer.
Looking at the Testosteron level is an interesting idea. I haven't thought of that. They always give us these two sheets full of different blood results and the only ones I ever look at are AST and ALT for the liver really.
Yes, we have to check the PSA with every blood test, I think.
Mel and Paul.
Dear Melanie and Paul,
I am terribly sorry to hear about Paul's latest PSA report.
I'm not sure about what the best thing to do is, but I'd like to make a few suggestions.
Sometimes we need to think about the time we have left and what we want to do with it. There may be family and friends that we want to include in our time, and time we want to just spend with our spouses. There may be things we've always wanted to preserve, maybe by writing them down or by making photos or a recording or a video. There may be things we've wanted to say. For all of its pain and terror, cancer has one benefit that we can take advantage of. We can see where its going, predict the amount of time we have, and plan to use it wisely and the way we want. I think that can be a blessing.
We needn't despair. I believe that all the life that we have is worthwhile, whether it's in the beginning, the middle, or the end of our lives. Sometimes we can make the most of it by taking that time for ourselves, not running from doctor to doctor or treatment to treatment with dubious chances of success, but being home with family and friends, facing the future calmly and with appreciation for the lives we have lived.
There are some practical things to take care of. If the cancer grows, it could become very painful and debilitating. There are palliative care services that can help a great deal with that and since some services are better than others, it can make sense to check around to find a good one in advance and consider any practicalities like cost and distance. Often there are local counseling services for the elderly that know all about this issue and can make recommendations. It can also be useful to think about whether Paul wants to stay home if things get bad or be in a care facility. It is sometimes possible to get home care these days that can be as good as a nursing home but allow a patient to live in his own home. Studies have shown that sometimes people can actually live a little longer when they are relatively relaxed and at home than if they are in a hospital. There are other practical things to think about too. There may be things that Paul knows he needs to write down for you Melanie, and legal documents like wills and legal and health care powers of attorney. There may be things to be discussed frankly with your children.
I don't want to scare you or to discourage you from pursuing any treatments that you think might be able to help. I just want to encourage you to face any changes in a positive way, with your own plan and your own desires about what remaining life should be like. What you're going through now is a normal part of life. Every one of us will go through something similar. I think we want to choose how we wish to live the end of our lives. I think we want that time to be meaningful to us, a time of reflection and appreciation and love, a time from which pain, fear and panic are smoothed away.
I hope with all of my heart that this is useful to you, and that you and Paul can face a future that is as good as it can be.
My best wishes to you both.
Alan
Alan, thank you for your message. It was very painful to read it because the things you mention are exactly the things I have been trying to run away from for months. But this morning over breakfast we decided to sit down and write a list of all the things Paul wants and all the things I will have to do once he is gone, not because we think that the end may be close but because it is good to have such a list anyway and to know what to do in a situation where grief might prevent you from thinking straight.
And you are absolutely right. We have to do it now.
Mel.
The "Get It Together" workbook is one of several good planner/organizers for people facing serious incapacity or eventual death. Just going through the process teases out a lot of the previously hidden practical and emotional issues that any patient and family may need to address sooner, rather than later. For example:
amazon.com/Get-Together-Org...
There are probably several others available that do similar things, and this is not an endorsement for this particular product.
I took my time and completed an initial version of a planner/workbook like this during my first year after diagnosis - doing it a little at a time. Now it is relatively easy to update once a year, or as minor changes occur.
There are also good "In The Event of Death Checklists" out on the web, too.
My spouse and I also engaged some professional help from an estate attorney with a divorce mediator background, and created balanced Estate Planning documents, tailored to our mix of separate assets, our wishes to provide security for the other on the event of either of our incapacities or death, and to provide for the transition of some assets to prior adult children of our mixed family. A trust, decisions of what assets went into or stayed out of the trust, discussions of our various retirement and other accounts and their beneficiaries status, powers of attorney for financial matters, powers of attorney for health care & health directives, wills, etc. Again, just going through the process brought up significant loving wishes, lingering fears, desires, and a better resolution of things previously left unsaid or unaddressed, ... until we actually sat down and talked about them with a facilitating professional. It helped us both as we took the time "up front", while dealing with my ultimately incurable Stage IV prostate cancer diagnosis.
Just some thoughts from our experience,
Charles
That all sounds like excellent advice Charles.
I haven't been at all organized in getting things together for the time after I'm gone, and I wasn't aware (but should have been), that people have thought about this a lot more systematically than I have and have written guides that can help.
Thanks for posting this. It's probably worth posting as a separate top-level post too.
Alan
Charles.
Thank you so much for posting this.
And thank you, Alan, again for your posts, both the first one and the one from yesterday.
I think really writing out lists like you suggest is very important but we haven't done so because there is this feeling that, once we do that, we resign and stop battling and accept now that this is the end. But it is really important for us - Paul and myself- to remind ourselves that this does not mean the end; he could still live for a good number of years, or I may pass away for some reason, but at least we have things in order for when things happen.
I think we will sit down today and write things out. Firstly, Paul would like to make a list with me of things that I need to do immediately after he is gone. And I agree: that will be very helpful. And, again, the list would be the same if I the situation was reversed. And then he would like to talk about what he would like in his last weeks or months of life, about funeral arrangements and that.
Yes, it is painful, but it will also bring us even closer together in this difficult situation.
And thank you, Charles, for posting the online resources.
Mel.
Melanie,
I thought long and hard before I posted my reply to your posting. I was afraid of causing you more pain - something that I absolutely didn't want to do. But then I thought that maybe it would help and the shock and pain would be less over the long run than if I didn't post it.
Many years ago my wife and I took an Alaska cruise. We met an elderly couple who lived on a farm in Oklahoma. They were in their 80's. The husband was a sturdy old farmer and the wife was an endearing lady, bound to a wheel chair and suffering from terminal cancer. They had never been on a cruise or gone to Alaska before. I doubt that they had spent much time outside Oklahoma in their whole lives. They said that they wanted to see Alaska while they still could. A few days later I saw the two of them on shore at one of the Alaskan towns on the cruise route. He was pushing the wheelchair and she was gazing at the snow capped mountains with a wonderful smile on her face. I thought, these people understand life and are living it beautifully. They taught me something. I hope I, and all of us, can do as well.
Best wishes.
Alan
We all must do what is suggested by Alanmeyer. My 90 yr old mom was just told that she has stage 4 kidney impairment. At 90 it’s critical. Our hope is not to have much brutal suffering for ourselves or our love ones. so this is my prayer for mom and for your Paul and for all of us.” Please limit suffering and pain and let us share love every day”
Hey guys, just one thought: When the AST and the ALT markers are improving and the PSA should really be going up, doesn't that suggest that the cancer is growing somewhere else, possibly in the bones?
It is so difficult to say, isn't it?
Paul's PSA has gone this year from: 7 to 10 to 11 to 27 to 98 to 105 to 129 and now to 250 When we met with the oncologist in July he said what had happened was that the cancer had spread into the liver. So we thought: Okay, this is why the PSA has gone up! But then the PSA kept going up and the liver function seems to improve!
So I am wondering: What don't we see?
Mel.
Melanie, my heart goes out to you and your family as your husband battles this terrible disease. My understanding, and I certainly have no medical training, is that once PSA exceeds 100, PSA level is no longer associated with prostate cancer mortality. By that I mean, the health and condition of other organs come into play and is of prime concern. Keep working on the Liver. Look for other areas of the body that need attention.
Without nuclear bone and soft tissue CT scans, one can not know where the disease or how the disease is affecting the body, not knowing about NHS and their protocols, I do not know if this is available nor to what extent. Point is that without information, your Medical Oncologist does not know where and how to prolong life.
Comment. Testosterone level (T) is a level that needs close attention. Most care and treatment is based on this number and it is a predictor of cancer spread as it feeds and expands to other areas.
I read recently the phrase, "Most metastatic Prostate Cancers are not curable; and thus treatment is usually based on prolonging life." As such, Alan's writing is very important to you, and frankly, most of the men and families in this group. Keeping fighting, yet prepare for a less than positive outcome.
Gourd Dancer
Gourd Dancer,
Yes, we will get a CT scan next Monday. We would love to do a PET scan as well, but they don't offer that here, we would have to go to the UK for that.
Interesting what you say about the PSA and how it is viewed when it exceeds 100. I hadn't read that before.
Mel.
Mel, I'll find my source and send it. BTW, I have never had a PET Scan that I am aware of.
GD
Jeez Mel,
Can you go over there and give Paul a big hug from all of us. Keep up the good fight, It's all we have.
J
Hi J. Thank you so much! 
Dear Mel:
My husband and I are sharing a similar journey as you and your husband. My husband's cancer has traveled to his bones and liver. His treatments since mCRPC in January 2016 have been a cycle of 4 treatments of docetaxel with Lupron and Zometa. The side effects prevented the last two rounds. In January 2017, the cancer metastasized to small cell liver cancer. He then started a cycle of six treatments of carboplatin and etoposide and continued the Lupron and Zometa. His PSAs are rising, albiet they are low due to small cell, August 2.37, September 5.7 and November 10.98. AST is currently 76, ALT, 92 and Alk Phos is 177. I do not see on his test results any testing for Chromogranin A so I will ask dr. about that. I learn something new everytime I read these posts. The oncologist suggested adding Xtandi to his regime of meds but we could not afford the co-pay which was $10,000 per month originally. We wrote the pharmaceutical company and could only get the co-pay down to $3,000. Both Xtandi and Zytiga are out of our price range so we are using ketoconazole and prednisone. We have to watch the side effects very closely as it could have contraindications with liver function. It is a very scary time. If keto has to be stopped or doesn't work, I believe we will have to try chemo again. With limited income, it feels like we are running out of options. My husband is very depressed with a lot of anxiety attacks and poor guy cannot even take his anxiety medication because his Xanax does not mix well with the keto. I am trying to keep him positive but he is sick and tired of being sick and tired. I look forward to watching how your husband is doing and feel like I am not alone in my journey surrounded by everyone on this site. I will keep Paul in our prayers.
Lynnette
Dear Lynette.
Thank you so much for your post. I, too, feel less alone now knowing that your husband and my husband are having a similar journey.
I am sorry to hear that certain treatments are not available to you due to the high cost involved. All those drugs are so expensive!
I think we were very lucky that both Xtandi and Zytiga were available here through our public health system.
It is also very unfortunate of course that your husband can't take his anxiety medication as this would interfere with his cancer treatment. It would be so important for him to be able to take something for his anxiety and depression right now!
Yes, it must be a very scary time for you both as much as it is for us.
Paul's AST and ALT have come dow a lot on Carbo Platin. I don't actually have the blood results in front of me here, but I know that one of the markers is back in the normal range. The other one is at 76 or 74. The third one you mentioned is, according to our oncologist, not very important as it is always raised when a man is on this Chemo treatment and the large amount of anti-sickness medication.
I hadn't heard of the Chromogranin A either, and it is definitely something we will have to ask about.
Let's keep sharing our story. And you, too, are in my prayers and thoughts as is everyone else here.
Best wishes
Mel.
Yes, Lynnette, staying positive is so very important, and sometimes so difficult to do. There is always this up and down - good news and then bad news and then all the not knowing in between.
Sending you a big virtual hug!
Hi Lynette,
I'm so sorry for the troubles you have to face, not just from this horrible disease, but from the support you don't have because of your social standing. This is a terrible time in our history, where we all are threatened with cuts in every aspect of our social safety net. What happened? Are you not on the ACA? Was/is it available to you? It's open enrollment time, right how. (not affiliated with any party or group, I am not a paid spokesperson.) Very best of luck.
J
Dear Jonzey:
Thank you for your response. My husband is on medicare and has supplemental insurance and the co-pays are just too high. Unfortunately, we are just a lower middle class family with limited resources and cannot afford the newer medications due to their high costs. We are grateful for the keto option and still have chemo to fall back on if that fails and just take each day as it comes.
Lynnette
Is your husband collecting SS or SSD? This whole thing makes me sick, mainly because I have great insurance. If I was on my own, I would have been gone a while back, I think. I'm at a loss for words...
J
He is collecting social security and is retired -- he is 70 years old. It really is difficult to understand the high cost of prescription medication and the choices people have to make based on affordability. I took am shaking my head about the position many people are being put in by the greed of pharmaceutical companies.
you need to get scans to see what is going on
We will get the scan done next Monday. I really hope that they won't interrupt the Chemo. I mean, his next infusion is due for November 16, three days after the scan, and I hope that they won't postpone the infusion and wait for scan results. Whatever is happening in Paul's body, the Chemo seems to work on the liver somehow because the liver function has improved, so interrupting the treatment is not a good idea I think.
Mel.
PSA matters less the more the disease has advanced, according to the experts. ALT and AST being stable is something to be thankful for. With liver metastasis, I would be much more concerned if reversed (low psa. high ALT, AST). The liver is of course where the disease becomes lethal. Imaging should be done every 2 cycles on the Carboplatin in advanced patients, so important. Be Strong, Never GIve Up!
Yes, Foreman471, that is probably a good point.
Hi everyone.
So I now have the results in front of me:
The ALT is normal between 0 and 55 and currently is 50.
The AST is normal between 5 and 34 and currently is 71.
So, yes, liver function has improved but slowly...
Mel.
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