I've been taking Xtandi for two months now and my PSA has continued to go down, however, I'm definitely getting more pain from a tumour on my back below my shoulder blade. It's gone from being just uncomfortable to now needing to take some painkillers before I go to bed otherwise it's too painful to get to sleep.
This seemed counter-intuitive as I expected the Xtandi to shrink the bone tumours, but while following references from papers I came across this one from last year which suggests that anti-androgens e.g. the lutamides can fuel the spread of bone tumours in advanced prostate cancer.
Hi. I started much earlier (2014) than you but there are similarities in our current situations. I experienced bone pain from Nov 2021. Started Zytiga (+ Prednisolone) in Jan 2022 and bone pain stopped soon after. Am also on Zoladex, which is keeping Testosterone steady at 0.7. My PSA continues to rise slowly however (now at 14, see profile) but CT scan comparisons show no progression. Plus am feeling ok with no side effects. Am also in NHS. This may be worth raising with your oncologist.
Thanks Ian. Reading your Bio, I see that you phased out Paracetamol in December 2021 when you stopped Casodex but didn't start Zytiga until a week later. Did the pain ease as soon as you stopped Casodex?
Casodex was phased out as I began with Zytiga. Bone pain was less evident then as I was using Paracetamol, which was also phased out as Zytiga was expected to be more effective countering bone pain, which it has been ever since.
Thanks, Allen but your links refer to the effects on PSA after stopping taking the drugs. My issue is not PSA level (which continues to drop) but is the fact that my bone met pain is increasing while still taking enzalutamide.
You wrote about your concern that Xtandi was feeding your cancer. I was assuring you that your concern is unfounded. But all second-line hormonals eventually fail even if they don't feed the cancer. The way to tell is to have a scan.
Thanks Russ, you may be right but I had some mild pain/discomfort in the same area of my back before I started the Xtandi and it feels like that's just got more painful - and my previous CT scan did show a significant met around there.
I do have an option to switch to Zytiga but being on the NHS, it is very limited. I have a 4-month window since starting Xtandi to see if the SEs are too bad in which I can make the switch, but it is a one-time decision. Once I've moved to Zytiga, I can't change back. Adding in the vertigo episode I had a couple of weeks ago, I may make that decision and do the switch.
I have my next appointment with the MO on Jan 6th at which we can compare the CT scans of last week with 3 months ago and discuss the way forward.
Have you heard that the Queen's Hospital at Belfast found that dying or dead cancer cells send signal to neighboring cells to grow. That is scary. So what you are saying may have some truth.
The good news is they have been working on medicine to stop the signals from either being emitted or blocked. Something like that.
I don’t know about the drug your taking, but have you researched Nattokinase it’s a enzyme that eats fibrin & tumours are shielded by fibrin once fibrin has been removed the body can see the tumour & deal with it as fibrin mimics our dna 🧬 & tumours keep growing & spreading, do some research as I use natural remedies where I can hope you don’t mind my input to you all the best
I have been on Xtandi, with monthly Degerelix injection, for nearly 2 years. I am nearly 70 years old and the only pain I have is the injection site, which goes away after a few days, and some slight muscle and joint pain. The bone mets were all cleared up, I had four, from my last scan in March, 2022. I do have some aches, though.
Are you sure you don't have a Scapular muscle injury, causing your pain, or some other ligament or tendon? When I first had bone mets., I pulled my Scapular muscle, doing bench presses & thought it might be the bone mets.
My MO put me on Apalutamide (Erleada), Lupron & Xgeva & my PSA dropped from 7.3 to 0.1 in 3 months. Scans showed everything shrinking so I think it was a muscle. With care & strengthening exercises it has gone away.
Actually I thought it was muscular at first. When I has sciatic pain about 6 months before I was Dx'd for PCa, I was using a walking stick and thought I'd pulled a muscle in my back through heavy leaning on the stick. But the pain never subsided then my first CT scan showed a met in that area so I assumed that was causing the pain. Since I've been on Prostap and Xtandi, the pain has gotten worse so whether it's a met or muscle, I would expect it to gradually improve rather than worsen. I've just had another scan so hopefully that will tell whether the met has shrunk.
yes. The xtandi is killing off ( for lack of a better word ) the cancer. Stopping there growth. On xtandi now for 6 years. This new normal will come and go as your cancers react to all of you meds. I have been on MS Contin ever since we started this battle. Never give in
As you mentioned there, in regards to the study, while Xtandi is great for soft tumours, it can rapidly accelerate bone metastases, as shown with the trial. Darolutamide appears to be a better option, as it doesn't cause AR splice variant mutations, doesn't cross the brain blood barrier, has higher efficacy than Enzalutamide, and very little side effects. It has also been shown to work in cases where xtandi has failed. This research on the effects of Enzalutamide on bone mets makes you question why it is still being pushed in these cases.
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