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.
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
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
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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.
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.
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