I had a full body MRI scan this week at Royal Marsden in London. The purpose was to assess the effectiveness of docetaxel after 3 infusions. The results have been very disappointing, and I'm struggling to keep a sense of perspective - not least because I was feeling so good, and had seen all of my previous symptoms (bladder discomfort, pain in rectal wall, and more) disappear. I'll try and be brief (questions to you all in brackets):
1. My PSA has risen after falling during infusion #2 - a fall from 32 to 25, now risen to 34.
2. The ALP has gone down - from 380 prior to chemo to 193 after 3 infusions. The conclusion is that the Doce is working well for mets in bones but is actually making local tumour in the prostate worse (has this been anyone else's experience? Is there something about Doce that works better on bones than organs?)
3. The recommendation is that we switch to Cabazitaxel (Q: Has anyone had experience - positive or negative - of switching?)
4. A single spot on the liver now has a friend - a tiny 2nd spot has appeared. (Q Should I be really concerned (I am), or is the systemic nature of chemo going to address this?)
5. I've been so lucky with Docetaxel in avoiding any significant side effects (Q: What SEs can I expect from Cab?)
6. The enlarged tumour is causing pressure on the ureter, which is leading to hydronephrosis. They are recommending a stent, presumably until we can reduce the prostate. (Q: Is it bonkers to think that the prostate could be reduced through surgery?)
7. I am awaiting the genomic analysis of a biopsy to see if there might be other treatments available to me. If the Cab doesn't work, I'm considering Lu-177 (Q: Would the chemo experience so far affect the prospects for Lu 177?)
Any thoughts you have would be welcomed. I have some big decisions to make.....
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PS I forgot to mention: After the news on my kidney, I've given up alcohol,a nd I have also given up sugar. Am I over-reacting, or is this something I should have done years ago?
My husband had lu177 to reduce the spread to rectal wall. They were then able to use external beam radiation to the prostate. Not SOC in UK and no evidence it helps but we thought it worth a go. He went to Docrates in Finland.
And did either of those strategies work? Did he have EBRT when first diagnosed? Or was this his first time? I had 7 great years after brachy and EBRT. But I may not be able to find someone willing to do it. Would love to know if the Lu-177 worked as well!
I started cabazitaxel plus carboplatin in Jan 2022 when my PSA was 52. It dropped to 0.4 in Jul 2022 so was very successful. Now after 27 treatments my PSA is up to 36 so I’m changing to Radium-223 for bone mets.
All in all I did very well the cab/carb with minimal side affects. Also have been taking a boatload of vitamins and supplements and no alcohol, meat or sugar (impossible to be zero sugars). Had peripheral neuropathy initially (numbness in my heel) so my cabazitaxel dosage was reduced and I put my feet on ice packs during infusion. No more increase of neuropathy after that.
Thanks TA. I like the sound of Cabazitaxel and Carboplatin - I feel like I need to hit it hard. Since I already had EBRT to the prostate (albeit 14 years ago) would I be eligible for further radiation?
Jan through Sept 2022, I had 10 infusions of docetaxal. Let me start by saying that my experience was worse than typical according to my docs.
Side effects were all you can list but the worst was horrible fatigue and nausea at least one week of every three. My PSA did not go down much until after the 4th infusion and then steadily declined to about 1.5. It then began climbing rapidly about 4 months following the last treatment . I wouldn’t have done it if another option such as Lu-177 had been available to me in the US. Also, I believe failed chemo was prerequisite then. I’m not sure about now.
In May 2023, I had a PSMA PET scan at Duke and arranged treatment with Lu-177 at London Clinic, Dr Amy Eccles. It wasn’t available in the US at the time. She and her team were remarkable. MY PSA began a rapid decline even a month following the first treatment.
I have now had 4 treatments (the last 3 at Duke as it became available here) and my PSA has dropped rapidly. Scans have confirmed the benefit with smaller, to no longer visible, tumors. I will have my 5th treatment this month. Side effects have been minimal, some fatigue, couple of days of mild nausea feelings. Some bowel urgency. From my experience, I would encourage PSMA-PET and if a good candidate for Lu-177, go for it. All the best to you on this difficult journey.
Thanks to all who have taken time to share their experiences. I appreciate your honesty, although those who have had 'success' with either Docetaxel or Cabazitaxel seem to have enjoyed only a few months before PSA rises and the cancer seems to become more aggressive.
Are there any men for whom chemo has led to longer periods of stability - perhaps a year? I'm not looking for false hope, but it seems like a lot of potential pain for a couple of months of low PSA!
“Are there any men for whom chemo has led to longer periods of stability - perhaps a year?”
Good question and I wonder myself. It’s worth researching. Meanwhile I can suggest reading the Related Posts at the bottom of this thread to get some insight.
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