My Husband was treated by Dr. Ezziddin in November 2019 with one treatment of 5.5GBq of LU 177 PSMA 617. PSA was 7.
We are now back in Canada and just test PSA again, it is down to 4.4
We contacted the hospital in Homberg and they are having capacity problems. Our specialist here in Toronto thinks we should definitely go for one more round or two but will have to look for another hospital to take us. Any advice or contacts in this matter would be helpful. I read on the forum that Dr. Baum is at a new hospital, any information on that?
Thank you all for your input. Your support and experiences shared here are invaluable.
Wife of Torontoman
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Torontoman
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I always try to avoid that my PSA value gets above 10 ng/ml. Below that I think you can make arrangements for the next treatment without anxiety. The figure is based on this study on intermittent ADT. They restarted ADT when the PSA value got above 10.
I had 4 Lu177 shots over a 32 week period after 4 Nov 2018
Psa was 25 before I started that ( after chemo had failed ) and Ps hardly moved after 2 shots of Lu177, but I demanded we continue, and after 4 shots Psa began to plummet. Docs added Xtandi to my diet after 3rd Lu177 shot, because its thought it makes Lu177 more effective. Follow-up PsMa scan in August 2019 showed no soft tissue mets and bone mets all healing up, so no need for any more Lu177 unless Psa goes up again. Psa was 0.32 last November 2019, I have Psa test tomorrow ahead of chat with my onco on 30 Jan, soon. I have no Pca symptoms and few side effects from Lu177. I am cycling around the town OK and now doing 180km week regularly, so about 9 hours hard exercise per week, so maybe I am healthy.
Indeed I agree with your Toronto docs that you have to have more than ONE Lu177 infusion. I needed the 4 I had, some men here have had up to 7, and my doc who administers the Lu177 at Theranostics Australia to me said one guy in Germany had 10 shots. ( I live in Canberra Australia ).
I agree with Tall Allen about seeking Lu177 elsewhere in Germany. Then there's a new development in this new Lu177 treatment to address the problem of why 30% of men look like benefitting according to their PsMa Ga68 scans, but they still have advancing Pca disease after having Lu177, and so FDG scans are also needed to see what Pca mets don't responds to Lu177 so that other treatment can be tried.
Pca is a real hard disease to try defeat, or to hold back to get a good QOL. But I got what was available here without dithering around and I think I have done well, because the alternative without Lu177 was palliative care and death.
Was wondering if you had tried other 2nd gen inhibitors before Xtandi was added to your regimen at third dose.
Certainly your treating physicians would have discussed with you,,,which was it,,,the succeeding 3rd and 4th doses, or was it Xtandi that brought your excellent response to treatments.
I too am on multiple pharmaceuticals, if I have a should good response on follow up blood work,,,which of them was giving it?
I made a correction in 2nd line of 1st paragraph. In error I had keyed LU 177,,,corrected to Xtandi.
I had my Lu177 given to me by Theranostics Australia between 4 Nov 2018 and May 2019, and at no time were 2nd generation inhibitors discussed by the chief doctors of that company. I don't believe they knew of the benefits of such things, if any, at that time.
But the doctor who administered patients for Lu177 on my3rd shot was Dr Louise Emmett, a leading research doctor in field of Pca. She was working in the clinic between her times when doing research work at St Vincents Hospital in Sydney, and she was waiting for a Govt grant of funds for her next trials where she would trial patients who were having Lu177 to be also taking Xtandi or Zytiga. She had noticed that in previous clinical work and in discussions with other doctors that patients getting Lu177 did better if they were taking Xtandi or Zytiga because these drugs increased PsMa expression, so made the uptake of Ga68 increase in PsMa Ga68 scans, thus this would make uptake of Lu177 better. This is important in the later doses of Lu177, where SUV for Ga68 declines because Pca is demolished so cannot express the same PsMa expression, so the effectiveness of latter Lu177 is reduced, leading to reduced extermination pf Pca.
Anyway, I explained to Dr Emmett how ADT failed, then Cosadex failed then Zytiga failed, then chemo failed, and I was not allowed to change from Zytiga to Xtandi.
But she suggested I begin taking Xtandi asap on the day of my 3rd shot because she had seen many men get a better benefit.
So in the following week there was a flurry of emails between her and my oncologist who has to follow public Medicare protocol for cancer treatments, and my onco prescribed Xtandi soon after that 3rd shot. It seemed this made the 3rd shot more effective, and made the 4th shot very effective. Dr Emmet said that even though the chemo had failed, I had had enough to re-sensitize my Pca to Xtandi or Zytiga, but she favoured Xtandi.
There was a follow up PsMa scan in August 2019 which painted a very favourable picture of war on my Pca, soft tissue mets all gone, bone mets healing, and Psa has kept on going down, and no mention has been made of any images in CT part pf scan that cannot also be seen in PET part of scan. Nobody has mentioned I should have FDG scan.
Since I began Lu177 therapy the research has continued at Peter Mac in Melbourne headed by a Dr Hoffman, and work is to find out why some 30% of men who have initial PsMa scans that indicate Lu177 will work, but then find that they get a luke warm response, Psa just flatlines, or hardly reduces much before going up, or it just does not work. It seems that men with mutated Pca are in the "we tried but it failed" category, and so from what I have heard, PARP inhibitors are used if the man has Brca-2 genes found in a DNA analysis. I probably do, because my dad's mum died of either Oa or Brca, my dad died of melanoma, a sister died of Oa, and other sister survived her Brca with double mastectomy and HT etc.
But none of my family history guarantees that PARP with say Olaparib would work if I was Brca-2 positive. My mother died at 98, never had any cancers.
But work at Peter Mac suggests that where a man has Pca flare up again after being beaten down by the usual 4 shots, he may have more Lu177 and get a similar response, and this can happen a couple of times before the accumulated side effects of Lu177 reach an unsafe level. This means that the mean time of extension of lifetime could be increased from the 14 months now known to happen with Lu177 patients.
I do NOT know what the future holds for me, but I am symptom free, and fairly side effect free, so can cycle 180km a week at present, and my onco doc will be pleased to talk to me after I have cycled 17km across town and in lycra, to see him next Thursday. He knows I am doing whatever I can to lengthen my life expectancy.
Psa before Lu177 was 25, and last November it was 0.32, so even if Psa is rising now, there is time to get myself analysed and try something else. And it looks like I will be getting an extension to life time of longer than 14 months. If Lu177had not worked at all, and nothing else did, I'd be deep into palliative care and waiting to die.
But I may live another 5 years, and who knows, live long enough for latest research to turn into effective treatment that is available here.
It is a nice day here today.
Was truly horrid yesterday, and even by 8:30am it was 30C. I had a rest of 30 mins after cycling 30km across town, but then the tailwind turned into raging headwind on way home where it nearly blew me backwards and on flat parts my speed dwindled to 7kph when it seemed wind was 80kph at times, and it had gotten hot, 34C, and I could not stay cool. I had to walk across two bridges because the cross wind made it so dangerous. But I didn't need to catch a bus home, I just kept going, and today I feel fine, so at 72yo, I have fairly good health. Huge clouds of dust accompanied the wind and turned the sky brown, as bad as the smoke from recent bush fires. Today is clear, no wind, so I could work on things in my yard.
I had keyed a rather lengthy response to your post. This miserable editor on my Apple Ipad, just pulled the football again and wiped clean my posting before I could save it.
Appears many software engineers have not learned much in all these many years.
Yes I am aware of copy and paste from notes, word,,,etc.
I have accidently deleted my own postings before sending on more than one occasion, so you need to be careful using a keyboard. But cable that brings broadband internet and plugs into side of my lap top has broken lugs that keep it well plugged, so I have to make sure I hold the plug before pressing "Reply" after typing what my wordy mind types.
Have a good weekend. Here its friday, which of course is a *poet's day* because...…….
We just met with our Doctor in Toronto. He suggested that my husband should have a shot of ADT before the next trip to Germany. Will have to check with doctors there on that.
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