Hello fellow Warriors. Just a quick update and then a quick question for all. I'm in the late stages of CRPC, just finished 7 "juicings" of Docetaxel which kept the PSA somewhat level, between 430 and 320, but more importantly it kept my ALT and LDH fairly low. It's been about 5 weeks since my last Docetaxel juicing and surprisingly my PSA has dropped to 277, but my ALT is up to 142 which indicates bone met activity. In the past week I also started to feel various pain in my bones (pelvis, lower back, sternum, base of neck) which would explain the high ALT. In addition my Bone Scan from last week showed a little more uptake in the existing bone met area, but no new spots. And my CT scan from this past Monday, showed very little increase in soft tissue mets, and not very many of them.
The immediate plan of attack is to get with a radiation oncologist and see if he can zap the bone mets to relieve the pain for now. Then my docs are suggesting to start Xofigo asap. We are also waiting approval to get into the Triton2 trial, which is based on genetic testing. We should know in a week or 2 if I'm accepted for the trial, and this is the preferred course of action over the Xofigo. However, there is only about a 30% acceptance rate into the Triton2 trial so Xofigo may be the answer for now.
Now my question is; If I do the Xofigo now, will that disqualify me for future Lu177 or Ac225 treatments. I believe the clinics in Germany, South Africa, and Australia are just that, clinics, and not Trials so their acceptance criteria may be more liberal than an official Trial. I envision doing Lu177 and/or Ac225 at some point in the future and I don't want to eliminate that option by doing Xofigo now, if the Xofigo will disqualify me for the Lu177 or Ac225.
Thank you for your valued input!
Zoran Polak
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Thanks for your input. My bad - it's my ALP that is high (142 U/L), not my ALT. My ALP hovered between 70 and 100 while I was on Docetaxel. The other blood marker that took off was my LDH - currently at 557, but was in the 200's during Docetaxel. Regarding the Liver, there is a small lesion in the liver 1.4cm (was 1.1cm 3 months ago). However, my doc thinks this lesion has been there for some time and is not convinced it's cancerous. Nevertheless, when I meet with my radiation oncologist we will see if he can zap that lesion. I understand that if there are any cancerous lesions in the Liver, Xofigo is not an option anymore. Never a black and white answer!! Cheersm
Have you had molecular testing for mutations that could have targeted treatments available? There is also second-line Jevtana (Cabazitaxel) chemotherapy you could try.
I know that prior use of Xofigo was an exclusion for the Vision trial with LU-177, but I'd guess you could still get LU-177 in other countries after Xofigo. I would check to make sure. You would also need to get a PSMA PET scan at some point to determine if you have good PSMA expression. With Xofigo, you would have the advantage that it's already approved, widely available and don't need to see PSMA expression.
Thanks for your input. I did have a PSMA PET scan at UCLA back in 2017 when my PSA was around 5. It picked up 3 soft tissue mets which we had surgically removed within 2 weeks. So with that in mind I believe I should still be PSMA sensitive for Lu177 or Ac225, but will definitely have to have another PSMA PET scan to confirm prior to the Lu177 treatment and create a "xmas tree" base line! Cheers,
I managed to get into the Lu-177 "Vision" trial..I don't THINK that being previously treated with R-223 (Xofigo) excluded people from the trial, but there was a waiting period (6 months ?) between the two treatments..I could be wrong.. Now that the Vision trial is closed, they have taken down the details from the trials web-page. The big difference between the two seems to be that R-223 works primarily against bone mets as the Radum is attracted mostly to the bones. With Lu-177, the PSMA617 ligand zeros in on PC cells wherever they are located, as long as they are PSMA positive, binds to them and the Lu-177 kills them.
What the treatment standards are in foreign countries where Lu-177 is available is anyone's guess...But being treated in a foreign country then flying back to the States and expecting your U.S. doctors to deal with any possible side-effects, I would be sure those details had been arranged in advance.. You could call one of the big German hospitals that does the Lu-177 treatment and ask them if having had R-223 disqualifies you from doing the Lu-177. Use the search feature of this board to find more information on being treated in Germany..Names, phone numbers, it's all there..
Thanks for your input. I do know that Xofigo is only for bone mets, and the fact I don't have many soft tissue mets, Xofigo may be the quickest answer and cheapest, I live in Ottawa, Ontario and Xofigo is completely covered by our medical system here. I could start the Xofigo tomorrow if I chose to, but I don't want to potentially eliminate any other future options, such as Lu177 or Ac225, by doing Xofigo now.
I'm in the process of contacting the German clinics now to confirm if Xofigo will disqualify me from future Lu177 or Ac225 treatments.
If you have the mutation in either the BRCA1, BRCA2 or ATM gene, you can take part in the Triton2 trial to test Rucaparib. Frankly, I think this is more or less a me-too product for Olaparib and that is already used and will be FDA approved soon. So if you do not get into this trial you can just take Olaparib.
In Germany the official recommendation is to use Lu177 after all other treatments failed. So if you had Xofigo before, you can still get the Lu177 treatment. Most clinics are so impressed by the results of the Lu177 treatment that they offer to treat you much earlier than "after all other treatments failed".
In my opinion it does not make good sense to get the Lu177 treatment after all other treatments failed because then the patients are already very weak from all the side effects that were caused by these treatments.
Thanks for your input. Yes, I have heard many times to go straight to Lu177 as it is very effective. However, no one really mentions the side effects of it, being long term dry mouth, and even worst for Ac225. This would drastically impact one's appetite, and me being only 150lbs (on a good day) would not help. I was very active and athletic, in great shape, about 175lbs but now a frail 150lbs frame. I just came off 7 rounds of chemo which totally destroyed my taste buds and ruined my appetite which cause my weight loss. So I'm trying to regain some body mass now before potentially losing my appetite again due to dry mouth with the Lu177.
Each treatment has a "life span", even Lu177 or Ac225, and each treatment is cumulative from a life extension perspective, so by doing as many treatments prior to Lu177, I believe I would be extending my life span as well. Just a thought.
If the PET/CT shows metastases expressing PSMA you could consider getting treated abroad with Lu 177 PSMA or with a combination of Lu 177 PSMA and Ac225 PSMA (Tandem treatments) if the scan shows diffuse infiltration of the bone marrow.
I believe Bad Berka and other places in Germany offer the Tandem treatment. There are many places in Germany and Australia for Lu 177 PSMA treatment.
It seems that these treatment may be more effective done earlier instead of waiting for other treatments to fail.
You could also consider to get the genome of the cancer studied by direct biopsy if possible or by a liquid biopsy. The cancer may have mutations which could be treated with specific drugas, mainly keytruda and olaparib depending on the mutations found.
You are right that prior use of Xofigo will not automatically exclude you from per protocol treatment in Germany. I don't know that Ac225-PSMA is worth waiting for, if you can get Xofigo now. Remember that the PSMA-based treatments only work (for a time) on cancer cells that express PSMA, and we know that PSMA expression is heterogeneous. However, the one I have my eyes on for guys with your Dx (bone mets) is the trial of Th-227-PSMA. What makes it interesting is that Th-227 is an strong alpha emitter (like Ac225 or Ra223), but that it soon decays into Ra-223 (essentially, Xofigo), which then detaches from the PSMA antibody and is then available to attach itself to sites of active bone remodeling regardless of PSMA expression, so you get the best of both worlds. Trials have begun in Finland and the UK, and they expect to recruit at Tulane and MSK.
Preliminary results of Triton 2 have been presented. Triton 3 is recruiting. The results so far have been good, but toxicity was high. Over half of patients had to take a break from treatment or reduce the dose. Rucaparib seems to have more effect than olaparib on some of the other non-BRCA DNA-repair deficiency mutations.
I think you ought to contact the providers of Lu177 to see if having Ra223 before Lu177 might exclude you from Lu177. Afaik, you could have Ra223 after Lu177. Don't forget Ra223 has side effect of making bones more brittle, but maybe the size of bone mets determines also determines this.
For any Lu177, you need PsMa Ga68 PET/CT scan, and you must have high enough SUV, ie, specific uptake value for Ga68 that indicates Lu177 will also be uptaken at met sites. PsMa avidity needs to be high enough. You should also know if you have Pca met sites which don't have SUV, it also means with low PsMa avidity.
Hello Patrick. I know from your posts that you've had Lu177 treatment in Sydney, but did you ever have Radium 223? If so where and at what cost? As it's still not on the PBS after years of lobbying, I was just wondering.
You only get Xofigo paid for once by medicare. I made mistake doing it too early.
Oncology mistake thinking had bone destruction from cancer rather than from destruction of a pubic bone caused by radiation. Oncology did not even look at my radiation records. Saw a CT scan and said bone destruction. Big mistake. Did Xofigo too early. Did not do much because not many tumors yet.Side effects were nill because not too much to treat.
Waited a long time before they would let me do LU177 per trial rules. Xofigo does not work well on soft tumors, only bone. LU177 works on both. Wish I would have done LU177 first. Still have bone tumors that could have been further treated later with Xofigo. Would have extended my treatment and my remission.
That oncologist quit this month and did not inform me until I walked into my appointment 2 days ago. Had to see a nurse practitioner instead, who also informed me of another surprise. Xgeva injection was my last one because my prescription would expire next month due to him quitting and could NOT be renewed at this time by the nurses. Have to wait a new oncologist to get hired. A year ago filed a grievance for him disappearing on vacation in the middle of my chemo treatments, canceling my appointment, and NOT assigning me to a new dr.
Good riddens to that oncologist. Good riddens to that cancer center. Went elsewhere to line up a better oncologist who I will see in about 3 weeks. Different institution. Thank God for PPO insurance that allows me to go anywhere to find care.
Regarding the rules in USA Vision trials. "Exclusion Criteria: Previous treatment with any of the following within 6 MONTHS of randomization: Strontium-89, Samarium-153, Rhenium-186, Rhenium-188, Radium-223, hemi-body irradiation."
An unwritten exclusion is if you are treated with one of the above, you my have to wait a very long time, perhaps a year, before your PSMA PET scan will show enough activity and your PSA is high enough to qualify you. That is why I had to wait for LU177.
Much of what you say applies to my situation as well. I did Taxotere rather than Docetaxel Not sure where my PSA is at the moment as I have pretty much given up on that score as meaningless.
I definitely have had bone met activity that includes bones (pelvis, lower back, sternum, base of neck) and my most recent Bone Scan from about three weeks ago showed very little change in the existing bone met area, but no new spots.
As with you, I have got with my radiation oncologist to zap the bone mets to relieve the pain for now. Then we start Xofigo. But we are NOT involved in the Triton2 trial; didn't know it was the preferred course of action over the Xofigo.
As to the question of whether doing the Xofigo now will disqualify you for future Lu177 or Ac225 treatments, I'm in the U.S. and know nothing about what the clinics in Germany, South Africa, and Australia are doing, so you will have to dig a little deeper for the answer to that; however, take note that a post here said that if you might eliminate the option of doing Xofigo it will disqualify you for the Lu177 or Ac225. More importantly, someone else posted that Medicare only pays for one round of Xofigo.
Just a note of caution as regards Lu-177. My brother who has had 4 cycles of Lu-177, the last three of which returned his PSA to below 5, and was regarded as one of the 'best' patients by the Theranostics Australia clinic, has recently rapidly seen his PSA and ALP levels rocket to 100 and 400 respectively. This change has happened within about 2 months. He is in a fair bit of pain as well. He is visiting the TA clinic next Friday and a oncologist 2 weeks later.
The MO is likely to offer docetaxel or xofigo and the RO might want to zap the skeletal lesions to reduce his pain. Another prospect is Veyonda, a new drug undergoing trials in Sydney right now. Noxopharma are expect to issue an update on their trial results within 2 weeks.
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