Docetaxal failed cancer spread to lymph but PSA dropped from 0.6 to 0.4

User

Posted 17 May 2017 at 00:29

Graham completed 5 of 6 docetaxal infusions befor it was stopped because of swelling to the leg. Checked for dvt all clear so referred to lymphodemic nurse. Leg, lower abdomen, hip and buttock badly affected, fluid not dispersing. Ct scan done. Results today show large blood clot in pelvis area, and cancer spread to the lymph system. I don't know the details of the spread but the oncologist just kept saying she was very sorry and that the cancer which is very aggressive has broken through the chemo. We came away with a months suply of another hormone treatment (name escapes me now, it's not abi but the other one I see discussed on here a lot. The strange thing is that despite this spread the PSA has draped from 0.6 to 0.4 it only started at 15 which seems very low compared to many people on here. The onco said the PSA might not mean much in Graham case, what does that mean, has anyone else experienced this? The way the onco was talking I felt as though we are coming to the end of the road, he has only been diagnosed a year.

User

Posted 17 May 2017 at 08:36

Yvonne,

I'm so sorry to hear this. I think our Lyn is best placed to provide you with some understanding of this but I'll define what I understand (I may be wrong). PSA is a pretty unreliable tool for diagnosing PCa. It is a more reliable, but still imperfect tool, for helping to judge whether a particular treatment for PCa is working or not. Sometimes PSA will drop but the PCa may still be spreading. Sometimes PSA will rise but the PCa is not spreading dramatically. So, it's an imperfect tool but a relatively cheap one to deploy. I think the only real way to monitor how well or not treatment is working would be to perform scans at the end of every treatment cycle (every 3 weeks with docetaxel) but this would be absolutely impossible for the NHS to do (we'd need hundreds if not thousands more scanners and radiologists).

I think the other treatment you are referring to is Enzalutamide. I really hope this proves effective for Graham. It worked well for me, click on my profile to see how well.

David

User

Posted 28 May 2017 at 11:25

Hi all. Things not improving yet but I am a bit calmer than my last post. We can't do very much until the clot has gone and so the effects of the blockage and severe swelling below waist are making everyday activity very uncomfortable for graham and not being able to be active is what's getting to him the most. Catheter had been fitted, now have a bladder infection being treated with AB's. We won't know if the Enzalutamide is having an effect on the PCa yet / fingers crossed 🤞

User

Posted 28 May 2017 at 12:34

Yvonne

PSA: less can be produced as PCa becomes more aggressive set against that new growth can increase it. So it's a better than nothing guide to the bigger picture. On that I read genuine disappointment, rather than giving in, that Graham didn't have the type of PCa, of the 27, that didnt respond as well as hoped. This differnet drug could well give a far better outcome. That combined with sorting out his other health issues shows they're still fighting with you. Fingers crossed Graham is soon more active.

Good luck to you both.

Ray

Edited by member 28 May 2017 at 12:37 | Reason: Not specified

User

Posted 29 May 2017 at 01:46

Thanks so much for your response Ray? It is so helpful to be able to voice and share thoughts, concerns, celebrations, tears of laughter and joy in this place.

User

Posted 30 May 2017 at 00:28

Hi Mountainstream
the onco could have meant that Graham's cancer was always low-secreting and so PSA is unreliable - was it definitely diagnosed as adenocarcinoma? Do you have any copies of the medical letters to the GP that might say what kind of prostate cancer he was diagnosed with (some kinds are known for not producing much PSA and are also known for not responding to normal hormone treatment)?

The other possibility for the fall in PSA is as suggested above. Active cancer produces lots of antigens which can be measured in the blood (a PSA test) but sometimes (rarely) as the cancer gets more and more aggressive it stops producing the antigens because it wants to exert all the energy it has on reproducing; hence the PSA falls as the tumours spread or get bigger. It is quite rare but happened to my father-in-law; unfortunately, his onco wasn't aware that this could happen so they just kept saying he was fine.

Fingers crossed that you get a better response to the enzalutimide.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 Jun 2017 at 08:53

Hi I all

I'm afraid things have declined a lot since my last post. Graham has been in hospital for last 10 days. Enzalutamide stopped because both kidneys became blocked. They have unblocked one and he has a nephrostomy bag? The oncologist said there is nothing left in the box with which to treat the cancer which is running uncontrolled. There is significant spread in the lymph in the pelvis and abdomen particularly around the aorta. The pain has been very strong and we have a couple of bad experiences over the last few days where his pain relieve was administered 3 hours later than it should have been. The good news is he is coming home today. Macmillan, the hospice at home team and our district nurse have been great. I think if we can keep the pain under control he can still have some quality of life though comfort and mobility is very much impaired by the lymphedema. One of the most difficult things is the lack of clarity about some things - for example they are now saying that there might not now be a large blood clot as originally thought and for which he was having daily clexine injections. Instead they say it could be a large mass. The kidney tube is now running well and the fluid is a good colour but it seems to be just blood from the tube that goes into the bladder.

I think I'm rambling here a bit, there is so much to say but I am getting tired of talking and I don't know what to ask. Just wanted to let you know.

User

Posted 15 Jun 2017 at 09:05

Yvonne,

I really hope that Macmillan and the hospice at home team manage to stabilise Graham so that you can still have some quality time together.

David

User

Posted 15 Jun 2017 at 10:24

So sorry to hear this. I hope that you both can get all the appropriate help you need at this time so you can enjoy some quality time together.

User

Posted 15 Jun 2017 at 12:37

Sad to read you're at this stage. I hope and expect Graham will be kept as comfortable as possible via Macmillan and district nurses. You to will need support so dont be concerned about asking those helping Graham to help you if need be.

At this time try to forget mixed medical comments as there is no gain in letting them concern you.

Ray

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