Just returned from Heidelberg after second treatment (first one was almost four months ago in late January) and already feeling rough from the toxicity / tumor apoptosis. Looking for some advice about how to handle this.
The good news is that the first treatment has had quite spectacular results on my nightmarish condition - before and after scans attached. So the doctors said I might not even need a third treatment in September (longer gaps than normal because my PSA steadily declined from 240 to 40 ish over 3-4 months) . A PSMA PET CT either here in UK or in Germany (cheaper!) in mid Aug will determine that.
So, what a powerful treatment this can be (I had 6 parts Ac225 and 2 parts Lu177). Unfortunately for me, in terms of side effects too, though (apparently most men seem to handle it fine) - mainly mild nausea, brain fog, headaches and deblitating weakness / fatigue. The latter lasted for 3-4 months last time.
I have anti-sickness meds and an arsenal of anti-oxidants like Quercertin, Reveratrol, curcumin etc.. plus some supplements for supporting phase 1 / 2 detoxification - just not sure what is wise to take. I also have a rebounder for helping clear out the lymph system, and I do FIR saunas at home many nights a week which flushes stuff out and takes a load off the liver and kidneys. I also have an ozone generator (for rectal insufflation) but haven't quite sorted that yet.
Any suggestions greatly appreciated.
Jason
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Sriyantra
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The side effects will diminish in time. Keep up your vitamin D3 level. Keep your flushed, lots of water or green tea. It seem like you have a good handle on supplements.
Avoid supplements, especially antioxidants, when you are trying to get radiation to work. They interfere with it. Also before your PSA tests, avoid supplements that may interfere with monitoring your PSA like curcumin, genistein, EGCG, resveratrol, and capsaicin. Also note "Some of these compounds, including curcumin, are capable of forming stable metal ion complexes and should be scrupulously avoided by patients taking Ga-68-PSMA-11, Lu-177-PSMA-617, technetium bone scan, or gadolinium MRI contrast agent."
Indeed. And thanks. I did wonder about supps interfering with the radioactive particles. I want them to stick around and detonate tumor cells, not get flushed out. But mopping up free radicals with Glutathione and similar detox pathway boosters, is, as Nallakrats said, part of figuring out how to feel less whacked by the treatment.
You have given us such good information in the past ,I hop you don’t mind my reaching out again. My husband Has just finished 4 doses of Docataxel, did not work
And 3 treatments of cabazitaxel also unsucessful and is trying to get onto a trial at Weil for Ac225. The problem is his hemoglobin is stuck ar 8.2 even after an iron injection. His platlets are also dropping. Last week 161 today 121. We are petrified. He was Dax August 2016 and has has every treatment including Radium 223
Msk is trying to get him on olaparib but we really wanted the trial at Weil. Can you suggest how to get his blood work up to qualify. I’m not sure I can ask you this but I’m losing it and always respect your advice to everyone
PARP inhibitors seem to work particularly well in men whose tumors have DNA repair defects, especially BRCA 1/2, but may also be useful in situations where carboplatin may be useful. Try to stay with what you know in the present moment
thank you, I need to remember that. He has RAD 51 mutation. I guess we will find out Monday. There must still be a trial and these two large hospitals. We are not ready to give up.
Free radicals is exactly how the radioactivity does its job. The alpha (ac225) and beta (lu 177) particles ionize water and oxygen molecules creating hydroxyl free radicals (among other things). Those free radicals attack the DNA of the cancer cells, causing single and double strand breaks that cannot be repaired. The cancer cell dies when it tries to replicate. "Mopping up free radicals with Glutathione and similar detox pathway boosters" is a prescription for interfering with the process.
My husband is not able to get on the LU-177 phase 3 and is being offered AC_225 at Cornell. What are your thoughts about this trial. He has had, docetaxel, xtandi, zytiga, radium 223 , docetaxel, and now three treatments of cabazitaxel. His PSA is hovering around 98. We are desperate to try a clinical trial but we want to make the correct decision. I have followed your posts and greatly respect your opinion,
Scott Tagawa is excellent and his trial is excellent. It uses a ligand (J591) that may be more specific (lower toxicity) than the ligand used in the VISION trial (PSMA-617), and Ac-225 is a more effective cancer killer than Lu-177, though shorter range.
You know a lot about this Tall_Allen. I have talked to Fortis in Delhi about Lu177, and since it is only showing PSMA expression in my prostate now the doctor is suggesting ACT225. She said it is better if it isn't showing in the bones anymore and works better for tissue. They have been doing ACT225 since 2016, and I am having my scans from India and reports sent to her. Since I am stable I figure it may be worth a shot before having the prostate removed in case there are any CTC's which seems likely in my case.
My primary is still showing as having a PSMA avid of 13 as of my last PSMA PET scan done in January. Started at PSMA avid of 28. And there was PSMA avid in my bone tumors b4 the vaccines resolved them. I won't do it if it doesn't sound good as the vaccines have no side effect profile.
We are in the same boat. The vision trial was SOC for him. Not a good option after failing everything else. Seeing Dr Tagawa tomorrow about options including AC225. Don’t know how he will feel about us dropping out of the trial right away and joining a different trial. I know he has waiting lists for others.
Yes Dr Tagawa has the randomized vision trial which my husband was accepted into but did not get the drug. I believe they may also have the non randomized dosage study but that has a waiting list.
Did you see Allen’s replies below? Seems like free radicals are key to Killing of the tumor masses). Also I have avoided Glutathione supps because of mercury amalgams.. I have ten mostly huge ones! To be honest I suspect this is a big player in my cancer diagnosis but currently don’t have the bandwidth health wise to get them removed safely. I do feel at some point though that it’ll be necessary.. and then there remains the complex issues of binding up the stored body Mercury and excreting it - initial functional tests have shown I’m likely a non-excreter.. (impaired detox pathways). which could explain the brain fog and fatigue i’ve had for almost two decades. I also read in a few places that mercury likes to deposit in the bones causing various cancers, but especially PCa. I don’t know how reliable this information is though.
So... just to update my story... two PSMA-617 treatments did reduce bone marrow tumour masses but I still have many spot tumours throughout skeleton and PSA has recently shot up again from a low of 30 a month ago, to a current value of 75. Perhaps not surprising given my last treatment was May15.
German nuclear medicine doctor in Heidelberg is now recommending Docetaxol in the UK as a possibly more effective alternative to continued PSMA therapy, although if I don’t choose that (not had chemo so far due to methylation concerns from Functional medicine test results) I am still scheduled for a third PSMA treatment in mid Sep but this time he suggested a reversed ration of Lu177 to Ac225 - so probably 6 parts Lu and two parts Ac225 - because of dry mouth, overall toxicity, and the fact that I haven’t noticeably improved physically since I started treatments. Still very fatigued and weak but addressing that currently with coffee enemas, NT Factor supplement and rectal ozone etc.
Aside from the recent PSA rise my bloods are generally way better since treatment .. platelets really recovered to 240 (from 80) and other things improved a bit. ALP is still 700 since March/April but used to be 2500-3000.
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