Nice to meet you all - this is my first time writing on here and I am so inspired by all of you. I was hoping that you could share some of your experience (or some words of assurance).
My dad (62) was diagnosed with relatively aggressive, stage 3 prostate cancer back in 2019, and he was responsive to radiation therapy and chemo, and went into remission. His PSA levels started rising again last year, and his oncologist located an isolated nodule on his lung - something we have been told is quite unusual. The nodule was resectable, but his oncologist opted not to operate as it probably indicated more systemic/widespread presence of the disease anyway.
Since then, he’s been on lupron and xtandi, which have been keeping his PSA stable. He had scans last month, showing the nodule on his lung had not grown, and no bony metastases, which we were happy with as he has had very minimal side effects.
A couple of weeks ago, he became very fatigued and weak - he says that he feels unsteady on his feet because of this, so we arranged an appointment with his consultant. He has a brain scan next week to rule out brain mets, which we are told are quite rare. Consultant doesn’t expect anything to show up because his scans from last month showed no signs of further spreading, but wants to check anyway as my dad’s presentation has been somewhat unusual so far, with the isolated lung nodule.
Lots of rambling from me here, but I just wanted to see if anyone had experienced anything similar - sudden onset of side effects to their drugs or something similar. We’re based in the UK, where treatment can sometimes be quite conservative, so I just want to make sure that we’re advocating for the best treatment possible at all times.
Thanks everyone and take care X
Written by
Bradshawsl
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If the nodule on his lung did not shrink after the Lupron+Xtandi, it is probably not prostate cancer, and is probably a benign nodule (which is common).
It was biopsied and confirmed as prostate ogliometastasis, but as I say, highly unusual. Consultant said he either expected it to shrink or stay the same size on the xtandi + lupron and dad doesn’t really present any symptoms for mets on the lung thankfully.
Maybe just another incompetent MO? Did you have a PSMA PET scan? That should tell you if the mer in his lung is maybe a prostate cancer met? What is your PSA now? Did you have a liquid biopsy?
Thanks for getting back to me. He did have a PET scan and biopsy yes, the tumour in his lung is a met.
Ogliometastases are very rare but not unheard of - my only concern is that the dr didn’t want to operate to remove it. It is resectable. The rationale for not removing is that drs tend to assume removal is pointless when QOL is high, because there are probably ‘micrometastases’ that imaging is not yet advanced enough to pick up. Not sure how I feel about this, but we have had a second opinion.
My dad started Xtandi just over a month ago. His oncologist warned him about possible balance issues - luckily so far he did not have problem with balance, but as far as I understood, this can happen with Xtandi. He is more fatigued though.
You can visit product site - it is also listed that "XTANDI treatment may increase your risk for falls and fractures."
I did catch this on the side effects - just very panicky that his oncologist has ordered a brain scan. Did a bit of research last night and saw lots of men presenting with fatigue and weakness in their legs, which makes them unsteady which makes me think it’s the drugs.
He has been on them for just under a year with minimal side effects (initially just mild fatigue), so seems odd he’d deteriorate on them so suddenly. His PSA is still stable (can’t remember the number but it hasn’t gone up) so seems to be working on that front.
I read from many men of the site, that side effects were accumulating over time, hopefully there is nothing more to it for your dad as well. Several fighters here, who are on Xtandi, had to lower the dose due to side effects and did just as good in terms of controlling disease.
But I get the panicking and worrying - I experience it often myself. If possible try to engage in some activities, that will keep you busy till scan results are available. I know it is much easier said than done, but tell yourself you did all you could - your dad is now getting a scan and there is nothing more you can do at this point.
Can you fill out your profile? Which therapies did you have until now? We hat is you PSA? Can you get cabasitaxel chemotherapy? If your PSA is above 5 or even better 10 could you do the liquid biopsy guardant 360 and find out if Olaparib or Keytruda would work? Can they start cabasitaxel chemotherapy as as possible? To get back a result from a liquid biopsy you may need one more month. What was the result of the biopsy of the lung? Did they find any workable mutation?
Obviously you are castrate resistant therefore Enzalutamide is not shrinking the tumor. You need a cabasitaxel chemotherapy. That is crossing the blood brain barrier.
Is any good reason that you can't fill out your profile?
Hopefully you will get some help. Keep us informed what's going on in the future. You have to push.
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