Advanced Prostate Cancer
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Post chemo and my condition is stable (phew!)

I finished 6 rounds of Docetaxel in late June and recently had a CT and Bone Scan to see where things are at. The good news is that I have not had any progression, I have the same number of bone mets as I had in January. I asked the MO if the chemo had done anything, as I had a low and stable PSA before I started. During the chemo, my bone pain was constant, while a lot of guys report a reduction in pain soon after starting chemo. All through chemo and since, I've wondered if the chemo was doing anything. The MO said 'of course' but left it at that, when I asked her. I'm not convinced. It is possible, I would have progressed during the 3.5 months I was taking the chemo, if I hadn't actually taken it, but it's also possible it wouldn't have progressed. How would I ever know? Another thing I find puzzling is that my bone scan last week, was virtually identical to the one I had in January, which was virtually identical to the one I had in May last year. Does that strike anyone as odd? Has anyone else had a similar situation as on this forum, guys report change all the time, either for better or for worse. Don't get me wrong, I'm very happy with stable, I'm just curious. Thanks in advance.

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Congratulations on completing your chemo! Big milestone!

I had pain in my back after chemo, much like I had when I started. The doctor told me my spine had been damaged by the cancer much like a back injury incurred in an accident. And it needed time to heal. He said it really could not heal much during chemo and to give it some time.

He was right. It did get much better and barely bothers me now unless I stand or sit erect a very long time. So your bones may need time to heal.

Of course others with extensive experience might have other advice. But that's what I was told and it turned out to be correct in my case.

Best of luck! We are pulling for you!

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Thanks James. I still felt pain the first 3 weeks after chemo, but recently it has improved, so fingers crossed.

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I have had a similar experience. After chemo, I had continuing pain in my back and hip joints form cancer damage. It takes a long time to heal. I still have pain, sometimes severe, and it’s been a coup,e of years since chemo. But it does seem to be getting slowly better.

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Big congrats on finishing chemo.

I think it may take longer to see the positive results of treatment on your scans. These things take time to heal and if the mets are extensive like mine they will probably not heal completely. If the other indications such as your PSA and ALK PHOS are going down, I would expect the bone mets are healing.

A lot of people report increased pain of all sorts on chemo so that's not unusual. I've had some of that too. Most of those report a drop in pain once they stop chemo. Has your pain gone down since stopping chemo?

As far as the chemo doing anything or not, I would again go back to the large studies that have been done. The odds are clearly better for those who have done early chemo and my doctor said you go with that. I agree. Chances are better that the chemo has helped reduce the cancer cell population, particularly the cells that may not respond to Androgen Deprivation Therapy. It makes sense to me that killing a broader spectrum of cancer cells early on would be the preferable treatment.

I did early chemo with the thought that whatever happens with my cancer as far as progression goes, it will probably progress more slowly with chemo than without. Of course there are no guarantees. I figured I would probably regret not doing it, whereas I doubt I will regret doing it. You have given yourself the best chances possible going forward.

Hoping you have a long and stable remission.

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Hey Gregg, thanks for your comments. My pain was fairly constant for the first 3 week after my last infusion but has reduced recently (let's hope it continues). I will order an Alk Phos test and compare it to one I had a few months ago. I also went ahead due to the survival benefit shown by the CHAARTED and STAMPEDE trials and I hope to get a good deal of extra time, despite what the scans show. I too would have regretted not doing it I think.

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Paul, I am glad to hear you are so stable. IMO since the scans are so identical, I wonder if what they think they see is actually cancer, Other than a biopsy they have no way to know for sure, they use words like suspicious for and such.At any rate stable is good. I have had a little back pain in just one spot mid back since last chemo. Have a great day.

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That's a good point Dan. Bone scans have high sensitivity but their specificity is not nearly as good.

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Dan you are a warrior in every sense of the word. You pretty much ran a marathon of chemo treatments and you are always positive and optimistic. Thanks for the strength and courage you exude. Hope your recovering well from the trauma of the chemo.

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Thank You Dayat a time!

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Good point Dan. I have read that what appears to be lesions on a scan can actually be scar tissue, from where the lesions were. I feel pretty good, so life goes on!

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I could be artheritis or several other lesser things as well.

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I wonder also about the interpretations of bone scans. After my first bone scan (in response to bone pain I was having), I was diagnosed with Paget’s disease. It wasn’t until later, when they started doing more testing like PSA and a prostate biopsy, that they changed it to Metastatic prostate cancer. Funny though, I went to a walk in clinic at the start, before I had the first bone scan, because of bone pain. They took an X-Ray and the doctor there showed it to me, pointed out what he thought might be cancer lesions. It was a rollercoaster ride!

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Paul, Great feeling walking away from the last infusion, I couldn't wait for my body to recover. Its kinda like a really bad hangover that doesn't go away. Your body can actually bounce back without getting beat up again in 3 weeks.

The experience I had was that PSA dropped and cancer on prostate shrunk significantly. However many of my nodes were still showing enlarged. Before surgery it was the doctors opinion I had bulky disease showing in nodes. It was only after surgery it was discovered it was scar tissue from where the cancer was.

It makes me wonder how often that happens with other men and how many men are denied localized therapy due to doctors believing they know what they are seeing.

Ron

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Thanks Ron. Glad to hear you did so well.

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Paul

Good to see your chemo conclude. Question: Have you come across Theranostics P/L in Perth? They do LuPSMA Therapy. In Perth and Sydney. My brother has had a remarkable result after two treatments with Lu-177. His 30+ mets are gone and his PSA now down to 1.24 and still dropping. The other benefit of this Therapy is there are almost no side effects, other than dry mouth with some patients.

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Hi Alan, yes I have heard of Theranostics. I am considering signing up for the Lu-177 trial via Fiona Stanley Hospital in Perth. As far as I know, you need to be post Docetaxel, but have not yet had Cabazitaxel as the two arms will compare either path. The thing that concerns me is a 50/50 chance of getting Cabazitaxel, when I want to get the Lu-177. Cheers Paul.

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Paul, well done. It must be such a good feeling to have completed Chemo. Now give your body time to recover. And maybe they can do another scan in a while to see if things have changed. And you could mention this about the scar tissue as well. Stable is good in any case.

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Thanks for that Melanie. I'm feeling better, so that's a good start.

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Alan, I am not sure if I have missed your reply to me, that's why I am posting again.

When you say your brother's therapy with LU177 was so successful, can you tell us what mets are gone? Where they only in bones or also soft tissue and organ?

Sorry, I know I asked before and maybe you have replied and it has just gone out of my head.

Mel.

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Mel. Sorry only just seen your request. My brother had about 30 mainly bone mets. Also some lymph nodes in pelvic area also had mets. He had cancer in ureter area of his bladder as well. His creatinine levels have dropped from critical before enzalutamide, to just above "high" level to now above mid range, but suggesting far better kidney function. (One of his GU specialists wanted to remove his kidneys before the Xtandi treatment)

His PSA was 1.47 two weeks back and now down to 1.24 on Monday this week. His oncologist and urologist are both very surprised at his progress.

It appears that he has had a result to date much better than most LuPSMA treated men. Why is this so? I invite input.

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Big congrats on finishing chemo Paul. I finished my 6th and final chemo 4 weeks ago and i feel great. My bone pain from my pelvic, thighs and hips have diminished considerably. I am able to jog for the first time since 8 months ago. My Onc said that I had a very aggressive cancer. My PSA was 135 in Nov 2016 and rose to 435 two months later. Right now it is holding at 0.1. It maybe slowly but surely for you, but I know positive results will come out of this. Here's to a long and healthy life. God bless

Nick

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Thanks Nick and well done on your own great success.

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On successful completion of your chemo cycles, let there be light for your delight!

Hope good results will follow soon.

Sisira

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Cheers Sisira, much appreciated.

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after my 6 rounds of Docetaxel my PSA dropped to lowest point at 1.59, then increased and doubled once chemo was done. Post chemo scans showed all the lymph nodes had been absorbed by fatty tissue, and the metastatic bones had not changed or advanced, however they were still lit up like a Christmas tree. Bone pain subsided significantly during chemo, but as soon as the PSA started doubling the pain came back and with a vengeance. Only after 6 months of doubling, a brief stint on Casodex, i went to Zytiga and finally got some relief from the bone pain and some reduction of the PSA (First 3 weeks) from 225 to 155.

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Thanks for the info. I'm sorry you didn't get longer out of the chemo, you need some reward for the unpleasantness you have to go through. May the Zytiga give you many years.

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A shout out to Paul.

j-o-h-n Wednesday 08/09/2017 12:01 PM EST

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Cheers John, keep on fighting!

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Hi Alan.

Thanks for the info.

Mel.

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So happy you're finished and stable. I hope you continue to feel better and better Paul :) End of chemo hugs.

Jackie

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Thanks so much Jackie, it means a lot.

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Hi Paul

I'm near Port Lincoln in SA, and have an MO in Adelaide. His advice was straight into Zytiga, backed up with Chemo if the Zytiga fails.

I have read a lot about the Lu177 and it sounds very promising.

Good luck cobber. Stay strong, positive and happy!

Cheers

Thevvy

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Hi Thevvy, I'm in Perth. When I started chemo (March-17) Zytiga wasn't available to me. I'm now on Enzalutamide. I should be getting Lu177 over next few months. Cheers Paul.

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