First, the warning. A week ago, I was in the airport in Bucharest, Romania after finishing a Danube river cruise. I set off an alarm and was taken out of line for a Geiger counter check. Five weeks after my VISION Lu-177 infusion and I was still radioactive! Romania had a radiation terrorist attack in 2008 and installed detectors. They accepted my explanation of cancer treatment, but be aware.
Third Lu-177 infusion yesterday. My second bone scan shows original bone mets stable or growing slightly, but "significant" and "considerable" new bone mets. My PSA and alk phos continue their upward trajectories at 101 and 454 respectively. My liver numbers are good, so it's the bone met activity that's driving the alk phos. So, at this point, it looks like the Lu-177 isn't doing much good. I'll give it another month before I reach that conclusion definitely, though. I tell you, I've got one TOUGH mutha cancer! It has whipped every standard therapy cold; you really have to admire it.
What next? Well, nothing; I've run out of options. However, I've been written off twice before and I'm a tough old buzzard so we'll see. The good news is there's no pain and I feel pretty good. If there's no pain by now, I may have dodged that particular bullet and that would be a great deal.
What is, is and you just deal with it. It's still a beautiful world, so enjoy it and ...... keep on truckin'.
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Stegosaurus37
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Whoa Stego , sounds like a spy novel .. The Danube and Bucharest,I envy you there Sir..sounds wonderful .. Setting off sensors . Wild man... You have a strong persona ... I happy that you’re in no pain . You ain’t no quitter , that’s for sure . Hang in there . We hope some good comes your way .. you are one “ tough muther” . Safe travels friend .. 🌵Scott
We visited the USA after my husband's third ACT 225 injection and were concerned about the TSA picking up the radiation but luckily no. Had a great trip and came back to good results. Bone mets way less and PSA was way down. However the PSA has climbed since then. One hot spot left in spine and one in pelvis. Still much less mets though.
I was gonna try those LU-177 treatments but people said it would make my ( 350 lb ) butt look fat.
Hang in there Stego ...I have a buddy that’s been out of options many times himself and he’s still here after more than 22 years. There are lots of new things in the PCa treatment pipeline ... nows a key time to spend time with your loved ones and ( as it looks like you are ) do those things on your bucket list.
I lived in Bucharest for work in 1995 - I'm sure it's changed a lot since then. I wrote a story about an island in the Danube that was submerged by damming. Have you had a Foundation One analysis done recently?
I'm not aware of Foundation One; could you give me more detail? I imagine Bucharest has changed a lot - Communist statues pulled down - but it definitely has a Parisian feel. The wide boulevards and fin d'siecle architecture.
I was there after Ceausescu, but Bucharest was scarred by Soviet architecture.
Foundation One is a genomic analysis that is done on tumor tissue. There are a few genetic mutations, not many, that can be targeted with meds like PARP inhibitors, platins, PD-L1 inhibitors, and a couple of drugs in clinical trials.
I may have had that done. I've got an appointment with my oncologist this Tuesday and I'll find out then. I do have the ATM mutation, which is why i was accepted into the TRITON II trial in January. Didn't do me any good and I was taken off the trial in March. Then I found out that they knew last November that rucaparib, the PARP inhibitor in the TRITON II trial, wasn't effective against the ATM mutation. Months which I can't afford lost.
Very happy to see you keeping a sense of humor. Your cancer can definitely beat up my cancer Hope you're able to find something even tougher and take it down a notch. Have you tried things like BAT?
Yes, keep on truckin’ and do as much of your bucket list items while you still can.
A high PSA with Lu-177 can mean a good kill going on. If it is working, the PSA in the days after the infusion will be higher than the day before. In fact if this is not the case, there would seem to be no good reason to do another.
New info from the last few days: There is a possibility (this needs to be confirmed) that Vit C IV reduces the number of binding sites on the cancer cells, so fewer molecules of radioactive markers or treatment will attach to the cancer. This means a Ga scan will also show less cancer than is actually there.
As pure speculation of what may be happening, the Vit C will "take out" the "low hanging fruit" which are the "active" cancer cells on the surface of the tumour - the same cells that would preferentially get the radioactive marker being attached. This would also then work the other way - Vit C after Lu-177 will not find as many easy kills. Or - to speculate further, Vit C given a few hours after the Lu-177 could "open up" another layer to use up more of the unbound Lu-177 instead of it doing damage elsewhere. This should not be too difficult to test.
You have so many well-wishers, your truck is getting over-loaded!
Shortly after a bone scan I visited the White House and set off a radiation detector. They sat me down next to a big wooden box and five minutes later it told them what kind of isotope I was emitting and they accepted my story.
That's weird... every time I go through those screening cubicles in airports I get an erection. Many times, I've asked airport security if those cubicles are on wheels and would they let me bring one of them home?
They said, no way....they use them themselves.... (selfish little bastards)...
I recently received my first radium 223 treatment. I was given a certificate that explains the reason for my mildly radioactive condition, along with an on-call contact number, should more info be needed by authorities. Any medical facility that offers injected or implanted radionuclides should supply a similar cerficate as a matter of course.
Dear Stegosaur, keep the faith. As you say; still going strong, keep going. Amazing that you still are lighting up like a Christmas tree. Have you tried a keto type diet? You might consider that everything you put in your mouth is important. No sugars, alcohol, carbs might prolong your life and make you feel better but what do I know. Good luck and keep your sense of humor.
Very surprised that the radioactivity showed up as Lu177 has a half life of only a few days. I presume you had a Ga68 PSMA PET scan done before your first injection. If there was not enough ligand uptake, they would not have gone ahead with the Lu177. I think there is still a good likelihood that the Lu177 will do the trick.
Numerous clinical trials will start to offer new therapies in next 12-24 months. In interim, diet + exercise is important imho. For motivation, read Jane McLelland's How to Starve Cancer. A good integrative medicine doctor interpretting and offering her MetroMap V2 protocol, would also help. Email me for a copy.
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Hope you're able to find something even tougher and take it down a notch. Have you tried things like BAT?
Zytiga and Liver Function
Comparison between alk phos bone specific range compared to non specific which would include liver etc.
Blood Test results -3 weeks after 2nd LU-177 infusion
LU-177 I&T, FAILURE?
Pluvicto Update: Second Treatment Coming up
