My Husbands psa has been climbing steadily over the past year, got up to 47in Jan , hes six years in with MPC from the start . psa 310, five mets.Had Doxytaxel straight away, now on Abi/Pred/or the last 3 years, plus lupron from the beginning.
I have been pushing our OC for spot Radiation for the last couple of years (we are in h UK, so NHS) so long story short OC sent Clint for one 'zap'on a met in his thigh in Jan. Two months later, no change, still rising slightly, then two months on , great news psa had gone down to 22! whoo hoo. almost halved.
Fast forward to last Thursdays visit to OC, and psa back up to 57? I was convinced that it would have dropped even lower.
Iv'e heard of psa bounce, but I don't think that would apply to our scenario.
To say we are disappointed is an understatement. Seems to have made things worse.
Can anyone (TA) jump in and give us an explanation as to why it only seems to have worked for 2 months?
Our OC has now ordered new scans (not psma, would have to self fund that at about £3000) and talking about chemo( Javenta . ) in the near future .
😞 Kim.
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There's no credible info that zapping metastases has any net benefit. Although a short term decrease in PSA is expected. It's what I call "treating PSA."
Thankou for your quick reply TA. I was at least expecting at least a six month drop, not just the two we got. Thanks to the link that you also supplied.
Hi TA, I much appreciate learning from your responses but I gotta ask, there is no point doing MDT (metastasis directed therapy) in this situation as there is no benefit, but there is in a salvage scenario? at what point does the rubicon get crossed and salvage after primary treatment is useless MDˇT. Is it time, location, quantity, PSA levels..
I wish anyone could answer that. If MDT has any effectiveness, it has yet to be proven. One RO I know, asked why they keep treating oligomets with SBRT. I answered "because patients feel like they are at least doing something." Another RO interjected, "Doctors too."
BTW, I'm not saying there is no benefit. I'm just saying there is no proof of benefit. My stance is:if safe, why not? And it should never replace systemic therapy.
The Efficacy and Safety of Metastasis-directed Therapy in Patients with Prostate Cancer: A Systematic Review and Meta-analysis of Prospective Studies
4. Conclusions
We found that MDT offers favourable PFS and a low toxicity profile. The application of MDT allows for the delay in the initiation of ADT in a significant subset of oligorecurrent mHSPC patients, helping them to avoid or defer ADT-related toxicity.
Combining other therapies with MDT is an emerging concept for treatment intensification, and the excellent LC of MDT suggests potential as a component of definitive treatment in oligometastatic patients. However, most of the prospective data come from small phase 1/2 studies. Until the results of ongoing randomised phase 3 studies are published, MDT in the setting of treatment intensification should be considered a promising yet investigational treatment modality with an uncertain impact on OS.
Circular reasoning: "The application of MDT allows for the delay in the initiation of ADT in a significant subset of oligorecurrent mHSPC patients, helping them to avoid or defer ADT-related toxicity."
I'm sorry to read your post this morning, you must both be feeling very down right now. I'm replying only to say that I really hope the situation improves for you both soon. I'm guessing that there isn't any point in trying to get a second opinion in the UK, the state of the NHS as it is ?
Thanks for your good wishes, as you can imagine we are both worried.Yes our NHS is under immense pressure. My Husband is having a hip replacement on Thursday, ! as if we havn't got enough to worry about.
I hope that Clint has a successful result from the hip operation. I had replacement knee done in September of last year. I experienced a lot of pain before the operation and immediately afterwards. My PSA increased and I became concerned. It's now on the slide again. My ONC said it was anxiety caused by the pain and the uncertainty of the operation. I did read that pain can cause an increase in PSA, but there is so much stuff out there.
I'm guessing that you've had to wait a long time to get the operation. I really wish you both the best.
To be Honest we have only waited 12 weeks, as hes a priority. We never thought with him having Mets, that anyone would touch him. Our OC put us forward two years ago, and clint just persevered , but this last Six months have been terrible, He can hardly bloody walk now . So we pushed for it and got in to see the specialist. Im hoping the PSA rise might have something to do with the stress ect.. I'll let you know.
I had a hip replacement last year after radiation to spine mets. I told the hip Dr that femur is common location for metastasis (I do not expect him to be expert on PCa) and he chose to use larger size device and use bone cement as well to make as secure as possible replacement fitting because of this. FYI
My wife and I hope that tomorrow goes well for Clint and that some of the stress is lifted off you both. If the operation is as successful as my replacement knee was, Clint will feel totally different. I hope he can get moving ASAP, I did.
Without the pain and some less stress, perhaps his PSA might start to drop.
Hi, Operation went really well thanks. When i visited today, they had , had him doing pyhsio, climbing stairs etc hes still in pain obviously, but they were very pleased with him.
Yes less stress would be good right now, thank you and your wife for your good wishes
Hi Kim, that's great news, I'm pleased they've got Clint moving, it's absolutely vital. The pain should subside, honest. I'm known as " Herr Klick " my knee is always there klicking away.
Fingers crossed that the PSA might begin to drop over the next few weeks.
Thanks for letting us know. We're thinking of you both.
Our OC has now ordered new scans (not psma, would have to self fund that at about £3000) and talking about chemo( Javenta . ) in the near future . If he is mobile you can get a much better price by travelling overseas for it. I got a price in India that was way cheaper even after including airfare and basic accommodation. Maybe worth thinking about?
We will get the chemo on our NHS, so no payment, as we have paid our tax's for many years to cover our treatment.
I have already looked at Lu-177 in India, a couple of years ago. May I ask where you got your quote from for India, and did you travel there? I suppose that is our last option looking further forward.
I am in the UK also. I did a google search and came up with a list of hospitals that do it at an unbelievably cheap price. All were around $600 at the time, if I remember correctly. Example below, will look for my other emails if you need them. I didn't go because of Covid19 travel restrictions and Indian hospitals closed their doors to foreign patients due to the large number of nationals in need of hospital care.
Don't know why you can not get it in the UK as in the end I didn't go to India and was sent for mine in the Churchill Hospital, Oxford. I had over 15 lymph node mets. above and below my diaphragm and that's when they gave me 6 rounds of Docetaxel. I think the treatment was worse than the disease lol but you have to try all available avenues.
Re: PSMA PET/CT Scan Enquiry
15 Jul 2021 at 09:08
PrintRaw message
OPD - MPCT Hospital
To: *************************
Pls call me on 8291900609
On Tue, 13 Jul 2021, 17:22 PET Scan Mumbai, wrote:
Message : Want to arrange a full body PSMA Ga68 PET CT Scan complete with scan, interpretation of results, report and CD of images/data. Are you open to foreign patients yet?
Same as the other posters, I wanted to share my solidarity with you both and offer my prayers 🙏 for a resolution. Your one of our most positive posters.
It is possible to pay for a second opinion at The Royal Marsden for approx £600 I believe and as mentioned, scans in India and I believe Turkey are much cheaper. However, I'm also thinking, can you switch from Abiraterone to say Darolutamide or Enzalutamide. I've never taken Abiraterone (Zytiga) but I'm sure I read that some people switched over from prednisone to something similar and had a good response. Best wishes.
The switch from prednisone to dexamethasone (DECADRON) with abiraterone often extends control for a number of months - about half the patients see their psa cut in half when they switch - ncbi.nlm.nih.gov/pmc/articl...
My oncologist, Dr. Oliver Sartor at Mayo, advocates having mets zapped, it’s worked for me twice already, he said I can continue to do it indefinitely depending on location and number of mets. On scans of previously zapped mets it showed resolution and healing.
Really pleased its worked for you. My Husband will have scans in Aug, to see whats happening. In the UK they only zap mets for pain relief. Again might have to look further afield for this treatment.
I feel that treatment options in the UK are far below those you have. As my Husband retired at 60, the private insurance stopped. unfortunately for us, we never got private Ins again.
Although I would spend all our savings on his treatment, we are saving for the Lu-177 chemo which is about £110,000 here, cheaper in India. Not sure if my Husband would agree to that .
I,ve already asked our OC about adding to or changing the Abi, A definite NO to that, says it won't work changing the meds, , so he's keeping him on the Abi for 3-6 more months. Our OC follows the rules to the letter. Yes maybe a 2nd opinion could be an option,
My Husband is having a hip replacement next week (due to playing football several times a week) and he's is in desperate need of it, so we can't fly for 12 weeks. Like we havn't got enough to worry about!
Thankyou for your kind wishes , and support, and your suggestions.
Hi. Am in Uk and also asked about changing from Abi to Xtandi when Abi looked to be failing (PSA rising steadily). Main argument against was cross resistance.
But my argument is.... why can't they just try it !! It just might work! I despair sometimes. Surely if your med is failing, try something else. They say no, and thats end of story.
I understand your frustration. But in my experience the system works according to agreed treatment protocols. If you want to do something different, you can go private but costs can be prohibitive, in Uk at least. In France moving from Abi to Xtandi is acceptable, so there are different views on this matter.
Apparently in the UK you can move from Abi to Enza, or visa a vers a in the first 3 months, if you cannot tolerate the one you are on, or its not working.
Thank you John, yeah in hinds site, wish we have taken medical insurance, would have been covered for a couple of procedures at least..... you live and learn.
We are based in the North of UK, (near Manchester) where we managed to go see the 'Eagles' play about 3 weeks ago, they were fantastic!
I liked watching Benny Hill too. Haven't seen any of those shows pop up recently. I am in the US. When I was young I was able to watch Laurel and Hardy. That's how old I am.
Let me tell you something about Benny Hill and his demise.
When he was a alive he found an old urn which he decided to clean by rubbing it.
It turned out to be magic one which spoke to him and said he would be granted one wish as long as he followed the magic instructions.
Benny agreed and asked what were the instructions?
The magic urn said you can have anything you want as long as you don't shave for the rest of your life, however if you do shave you will end up in this urn forever.
Benny said okay, and grant me a wish to be a multi-millionaire forever.
So Benny lived the wonderful millionaire's life for years and his beard grew and grew and was so long he had to drag it along every where he went. It was dirty and smelled so bad and itchy that he couldn't stand it any longer and finally shaved it off. Of course as predicted Benny ended up in the urn forever.
So the morale of this story is (hold onto your hat now).
I also have 4th stage Prostate cancer, but I am not familiar with abi/pred functions~ is it similar to the lutamide drugs? Darolutamide or Nubeqa? As I understand it, Nubeqa doesn't lower the Testosterone but blocks the T receptors in the Cancer cell. It seems to be very effective at helping to keep the PSA low. I don't know if it's available where you live, but it might be worth investigating.
Sorry but i'm not sure if Abi /pred is similar to any of the drugs you mention, but will look into Nubeqa not sure if we have that in UK, but thanks for your suggestions.
I’m so sorry to hear Clint is having this happening. Seems like he was ever so stable for so long. I know you both must be pretty upset. Dang nab it. I hope his hip replacement goes smoothly, and a beneficial path forward develops soon. A big fuzzy ehug out to both of you guys. I’ll put Clint on my transfer of merit board . Keep us posted on everything, ❤️❤️❤️
Hi Starsky. If you go onto TallAllens profile, there is a link to his prostatecancer news website. On the right hand side is an index of everything Tall Allen has written, the last entry is Zytiga. Open this, grab a coffee or tea and browse downwards. There is a section that basically says the following:A trial in British Columbia. 202 newly diagnosed mCRPC men were randomized to either Zytiga or Xtandi first. After progressing on the first therapy, they were given the second therapy (cross-over).
The Zytiga-first men progressed after 19 months vs 15 months in the Xtandi-first group
After cross-over, PSA was reduced by more than 30% in 36% of those who had Xtandi-second vs only in 4% of those who had Zytiga-second
Until we have a larger study that follows men for the rest of their lives, we can assume that the extended progression-free time among those who use Zytiga before Xtandi will translate to extended survival.
It's worth noting that it has been found that Zytiga can work a median of 10 months longer if one switches from prednisone (10 mg/day) to dexamethasone (0.5 mg/day) when progression begins (see this link).
Please discuss these findings with your Oncologist. There is proof that switching from Zytiga to Xtandi (Enzalutamide) extends life. There is also proof that switching from prednisone to dexamethasone can extend life. Good luck.
I have disscussed switching pred with dex, and our OC shakes his head no, its not up for discussion! As I have mentioned before NHS OC will not think out of the box, they follow a script, and it drives me to despair !!!!!
We are not allowed to change OCs really either, our local Hospital only has three, and you get one, an have to stick with them.To be honest he is ok, but will not really listen to the patients, he will say ( in the nicest possible way ) that he knows 'a lot more than me'
I will look at TA profile and website, thanks for your input, all I can do is try and convince our OC , but can see it happening.
I'm in Leicester. I've responded brilliantly so far to Enzalutamide after an eye watering high PSA in May 2020. I've met my oncologist twice! I have spoken to him on one other occasion, otherwise it is registrars etc. that call. Mine did refer me privately about radiotherapy, which didn't happen even privately, but he was reluctant then as not soc, so you have my complete sympathy. TA quotes a guy called Khalaf and there is a link to the research. Can prostate cancer UK nurses help? Ask them what the appeals procedure is. Even switching to Bicalutamide has to be worth a try.
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Post SBRT rise in PSA
Rise in PSA
Slight rise in psa - is it normal 
PSA after salvage radiation
PSA increase .08 to .15
