Has anyone experienced this? Until the end of last year my PSA and ALP numbers were climbing steadily into the hundreds and thousands respectively, despite monthly jabs. But on arrival in Heidelberg, Germany in late Jan for my first Ac225/Lu177 treatment I was surprised my PSA had almost halved (from 440 to 240) compared to three weeks previously. Basically I had restarted on monthly Lupron four weeks before Germany after stopping taking it for five weeks (an oversight / complacency). When I got back to UK a few days later it accidentally forgot about for a further month, however since then I started again monthly and have seen great gains in my numbers recently... PSA down from 240 in Germany to 48 now. ALP was more sluggish to respond but recently down by more than 65% (now to 770) after weirdly remaining close to 3000 6 weeks after Germany.
I should point out that the effectiveness of the Ac-22/Lu177 is measured after 6 weeks by a PSA test.. so in early March it was down to 140 (from 240)- a 40% drop which they said was promising. So these gains since then are more dramatic and have been accompanied by a noticeable increase in ADT symptoms - hot flushes, hair loss, fatigue, brain fog etc.
I was supposed to go back for a second German treatment in mid-March but was sick with a virus or something and they delayed it by two months (due to shortages of Actinum)!
Something worth pointing out is during this past two months I have changed some dietary and supplement stuff - mainly eating less oats, avocado, chick peas and sesame and green tea (since they are phyto-oestrogens - but mainly cos I strangely didn't enjoy them anymore!) and doubling my IP6 dose and adding in Berberine, Boswellia, spirulina and broccoli extract - and which potentially could have helped too
I'm am slightly concerned though that, now the first-line ADT is working again, that the second Ac-22/Lu177 treatment in a week's time won't target the cells that are now responding - I guess it's all about if they still express PSMA which makes them visible to the nuclear medicine.
Insights into this weirdness would be great! Thanks all.
Jason
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Sriyantra
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Thx, I better ask the German docs for their opinion. I do have some bica. They might be a bit mystified why the impt numbers kept improving for me long after the Half Life of the nuclear meds had deteriorated to next to nothing.
I would take the bica for this week. At least I did it before my treatment and I had an excellent result.
My friend and I also take bica about two weeks before a PSMA PET/CT to increase the PSMA expression. He says, with bica you see more than you wanted to see.
Lupron never stopped "working" - that's why it's important to keep taking it. By eliminating testosterone, you are depriving the cancer of one of its fuels. In fact, the cancer becomes more sensitive to testosterone after it becomes "castration resistant."
If the cancer no longer expresses as much PSMA, the PSMA therapy will work less. The best you can do is try it.
So there’s no evidence for stopping first-line ADT and then starting again having any beneficial effect? My PSA was doubling every month until I waited 5 weeks and then restarted the Lupron. Then it started halving every month - well before the administration of ac-225/lu177 and long after its half-life had expired.
You have to look at your testosterone at the time. PSA is only one biomarker - you have to look at the whole picture - bone alkaline phosphatase, met size and number, and symptoms.
To be honest, the thing that I find really "weird" is that you could FORGET to take Lupron for 5 weeks first and then again for about 30 days. You FORGOT ??
Was that brain fog or complacency ?? Figure it out and try to prevent it in future.
The second thing that I find "weird" is that this German place where you are getting your treatment done had a SHORTAGE of Ac-225. They had a SHORTAGE of Ac-225 ??? This does not even happen in Bombay and we import the raw material from Germany.
All the very best, Jason. Keep us posted, please. Thank you.
They called it the Tandem treatment. I think it is done to reduce the incidence of severe problems with the salivary glands caused by a whole dose of the Ac 225 and the same time treat better the bone metastases than using only Lu 177 PSMA.
1. Where exactly (doctor and hospital) are you going for this treatment. It sounds interesting. The study appears to be being done at Bad Berka in Germany.
2. Someone here said the Ac 225 was worse for salivary glands than LU 177. But they must know what they are doing.... at least with respect to the logic.
3. Do you know if this is also helpful to avoid kidney damage?
I never had Ac 225 and Lu 177 treatment. I had Lu 177 PSMA in Munich at the Technical University in 2016. Ac 225 is worse than Lu 177 for the salivary glands. Lu 177 may cause a transitory xerostomia vs permanente or very prolongued xerostomia with more than one treatment 0f Ac 225. I don't know if the combination reduce the potential kidney damage from the Ac 225. I believe they are using a smaller dose of Ac 225 to reduce the negative effects anywhere in the body.
It felt more like intuition, rather than forgetting, I knew it was overdue but something told me to wait. What’s so important if it’s not stopping the cancer advancing? (it wasn’t, and had started to lose its effectiveness 4 months after I started it). My PSA only ever came down to 8 on it, and mostly was much much higher than that ( Enzalutamide had slowed PSA doubling time but I felt terrible on it so stopped after a few months).
By stopping the Lupron recently, it must have had a resetting effect on its effectiveness I think. And yes, Heidelberg said they receive a very strictly controlled amount of Ac225 through the German Government, and it can only be allocated to a small number of patients every two months.
Yes I had intuition to go ahead and fly my plane without a medical ...never been checked in 40 yrs holding one....wait ...I am a dumbass...so I flew with my old instructor to be legal...pretty cool...3700 hrs need training wheels...this is science based not intuition...keep up the fight and stay on board ! Blue Skies ....grounded Sky King
Sriyantra...as far as I'm concerned you have every right to do whatever you deem worthy to keep your wolf at bay.....congratulations on taking these tremendous risks and efforts for your benefit and all our better understanding....hopefully you'll be soon reporting a signficantly lower recovering nadir.
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