Hi everyone, this is my first post. My husband has signed on to receive therapy for his metastatic prostate cancer on August 27 at the Hamburg campus. He was surprised to learn that he will most likely need multiple treatments and have to pay more each time as we understand it. He thought it was a one time deal.
We would appreciate knowing how many treatments you have had, how far apart and does it get any easier? We will be returning to the US. Do your doctors help you when you seek treatment abroad? Do they agree to perform the blood & psa tests?
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blueCello
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It's usually multiple treatments, unless it has to be stopped. In the VISION trial they give 7.4 GBq 177Lu-PSMA-617 intravenously every 6 weeks for a maximum of 6 cycles. Higher one-shot doses were found to be too toxic.
When I had the treatment in 2016, the offered up to 6 treatments, one every 6 weeks. The number of treatments depends on the response (I needed only 1), negative side effects and the amount of radiation received by other organs particularly the kidneys.
The usual schedule is a PSMA PET/CT and then two cycles of Lu177 treatment plus another PSMA PET/CT to see how the two cycles worked. Then the decision is made if it makes sense to continue or not. As gyancy wrote: "This is starting to get expensive..."
If the PSA value continues to rise after the first infusion the treatment is not working and you better quit the expensive treatment. The cycles should be the same price but the doctors may schedule different imaging so this could add to the costs.
Your doctors in the US cannot offer the Lu177 treatment so they should not object to do the blood and PSA tests. For treating possible side effects you would ideally go to a hospital that takes part in the VISION trial.
Tango65 and I got the treatment while being hormone-sensitive and having just lymph node mets. We both got away with just one cycle but this is very unusual, please do not expect that. They had planned to give me two cycles but I asked for a PSMA PET/CT after the first cycle already and that showed an excellent response.
He did with Zytiga but has done nothing. He is out of options except trials. Was hoping for Ac 225 trial but right now platelets too low. Not sure what’s next. Disappointed he did not get the drug.
Oh no - sorry to hear. Do you recall what the platelet requirement is? My husband's are finally in the normal range but he did struggle with low numbers earlier in the year.
Also - if I remember correctly, Dr T said that his hemoglobin needs to be at 9 consistently for one month without help from a transfusion. He also struggled with that earlier in the year but thankfully the last couple months has had good numbers. So - fingers crossed.
But - but October maybe he won't need it - at least that's what we're hoping. He has done very well on the Joe Tippens protocol (just finished week 12) and he's now 2 weeks into the Care Oncology protocol. Noticeable gains from both. Again - fingers crossed!
Good question - DR's are trying to understand why he is suddenly doing so well. Not sure if it is the Joe Tippen's protocol (he starts week 13 on Monday with the fenbendazole) or Care Oncology protocol - he's 2 weeks in on that. Or that he is eating a lot of organ meats to build his red cells. He also started taking nicotinimide at the suggestion of one doctor but that is just 3 weeks at this point. Also juicing alot of wheatgrass and greens which are blood builders as well. We are throwing everything at it so perhaps it's the sum total?
The guy who first posted on here 2+ years ago about Lutetium in Germany was named Raul. For some reason he no longer posts. He needed only one treatment as well. He seemed to have a medical background I recall.
The key thing is to determine via a PSMA 68Ga PET scan that the PSMA receptors on the PCa cells are sufficiently active. They will not treat you if the PET scan shows low activity. My brother had 2 cycles 8 weeks apart and two more 18 months later when the PSA started to rise again. Done in Sydney, Australia at about US$7K a cycle. Five months after he had his 4th cycle he is great and has been one of the better results.
By the way, you can avoid damaging the saliva glands by dose moderation. (I have a copy of the paper somewhere).
theranostics.com.au/. They do paying customers in Perth, Adelaide, Sydney and Brisbane. They are based in Perth. The top Oz clinic is Peter MacCallum Cancer Centre in Melbourne. World class leaders in this technology.
I include an extract from my coming 3rd Edition PCa book.
"I recently became aware of Telix Pharmaceuticals Ltd, an Australian clinical-stage biopharmaceutical company, that is publically listed on the Australian Stock Exchange (Ticker Code: TLX). The company announced in June 19 that the dose escalation data of their TLX591 mab ( lutetium 177-labeled anti‐PSMA monoclonal antibody J591), had recently been reported in the journal Cancer. 177Lu‐J591 was trialed on 49 men with mCRPC, dosed (variable strengths) two weeks apart under the direction of the Weill Cornell Medical College (WCMC). The therapy was well tolerated with notably no impact on the saliva glands even at the highest dosage used. (A key drawback till now of this therapy). The highest dose used gave the largest PSA level reductions and gave significant anti-tumour effect with a median overall survival of 42.3 months (at 95% confidence level). Perhaps the most important factor out of this dose escalation study, was that excellent results (both tumour load and minimal side effects) can be had with low and declining dosages."
A key paper on saliva gland toxicity is noted below:
Salivary Gland Toxicity of PSMA Radioligand Therapy: Relevance and Preventive Strategies
I'm 72, live in Canberra in Australia. just had 4 x Lu177 shots, and Psa before I began last November was 25, but now its 0.7, and costs including PsMa scans were about usd $30,000, and I got this from Theranostics Australia and if you go to their website all is explained fairly well, but there is no Medicare rebate here for any of this so its expensive.
The Sydney hospitals where I received the Lu177 here were equal to the best in the world and during No 3 and 4 sessions there were 2 other men from USA who had flown to Oz to get treated. They must have had the money.
After No 1 Lu177, Psa remained at 25. Doc was uncertain that I continue, but this is not uncommon as Lu177 takes time to work, especially if you have bone mets. I knew it would be my luck to not have an immediate response, because trials indicated that often happened. So Psa started to fall after No 2, and then fall after 4 was very good compared to what probably would have happened if I'd continued with chemo. I still have side effects of chemo, and my walking is a shuffling gait, but no pains, but then I'd had both knee joints replaced in early 2017 when there was nadir in Psa after being on Cosadex for previous 6 months. So although my knee joints don't hurt any more, there has been a lot to disturb the physiology of my legs. But right now I am coping with life OK and able to do things at home and not need any support as a single dude living in a house alone.
But I am also on enzalutamide, said to enhance the action of Lu177, and that also expensive but fully covered by Medicare. I take enzalutamide at night after dinner, and it seems to have effect of making me sleep more which is real good because when we are asleep the body gets busy trying to renew itself.
What Tall Allen says about multiple doses of Lu177 is correct. My doses were 8 weeks apart, and No 3 dose was increased +20% but not No 4.
My last PsMa scan report says I have had a pretty good response and bone mets were healing, and soft tissue mets are gone. But "gone" means mets are so small the scan can't see them. Maybe some Pca is still alive, but it may take a long time for the mets to get up to where they were a year ago. So far, I have no dry mouth side effect in daytime from Lu177, but at night I sometimes feel dry during my 4 wake ups to pee.
But my doctors and I know Pca is likely to grow back up like a terrible weed, but then I could have more Lu177 or AC225 if the mets show enough PsMa avidity. The PsMa scans are supposed to predict if the Lu177 is likely to work. Of those treated in Oz by TA, 70% get a benefit, ie, Psa goes low, and mean extra time alive is 14 months, but could be a lot longer if you get Lu177 early enough, and your Pca has not mutated in to various different types of Pca, some of which may not be treatable with anything.
You know, at this time of year, it gets cold in Canberra's winter. We get 100 frosts a year with a few -5C mornings. Now the venerable public hospital where I go does do some research, and a few years back a somewhat misguided patient got a big benefit during a trial and he was wealthy, and so he gave the hospital a life size brass stature of Chimpa, the chimpanzee who was first living thing to benefit from the research work, and who lived 20 years after the given treatments. The hospital could find no room for Chimpa's statue, but accepted him gracefully, so they found a corner in a garden where he could be erected on a concrete plinth, and bolted down firmly so he would not get stolen for his obvious scrap value.
Of course hospital patients don't venture outside to sunny areas in gardens anywhere as much as they should so Chimpa feels very lonely.
One would hope Chimpa does not remind patients of themselves.
But I used to cycle over to see my dour oncologist to hospital, and the best place the parks a bicycle was beside Chimpa and I could lock the bike out of sight to the statue.
Well, last year, after a particularly cold early morning at -7C, I cycled over at about 9am, only -3C, and went to lock up the bike, and Chimpa's balls had fallen off. I brought them into the main entrance office, and they must have passed them onto a maintenance guy who must have fixed them back on.
Anyway, I know how Chimpa felt with no balls, because the doctors have seen to my ball removal quite well, and, as everyone should know, it does get cold enough here the freeze the balls off a brass monkey.
My experience similar to Patrick. 4 doses, 2 months apart. Stopped PC soft tissue progress for 1-2y. Likely to need more, next weeks PSMA scan will tell me. R
Thank you so much for the wealth of information here and such quick replies! I am lucky to have found such a wonderful group of people. Some other things I learned from our Booking.com liaison with our "medical tourism" project to save his life might help someone else here (by the way Tall Allen, we wanted to try Oz but never got a reply and I read that you have to fail with hormone therapy first which my husband would never take so we gave up waiting.)
In Hamburg, spouses are not allowed to be anywhere near the diagnostics nor allowed to visit due to toxic radiation. There is a possibility that I can wave at him through a lead window.
His clothes must be supplied by him and should be thrown away after the treatment.
They do offer different diets; he has been trying to manage his cancer with Provenge "off label" and our version of a ketogenic which means no sugar, no sugarless foods unless they have stevia, no alcohol, no carbs nor any of the good stuff you really want.
If you want to take Vitamin C supplements before treatment bring them. Probably also bring the ice packs to keep dry mouth down and I have seen cancer "caps" that cool your scalp possibly keeping back the possibility of losing your hair.
He can bring a CD player and a phone to hospital.
There is a night time staff at hospitals in Germany but "it is time to sleep".
Finally, most of what I have learned about cancer came from reading a very interesting book "Tripping over the truth" by Travis Christofferson. In a nutshell, it explains the metabolic theory of cancer, that your cells stop being able to process oxygen and turn to sugars for energy which drive cancer cells to madness. Turn off that switch (or pursue a keto diet) and we might find a cure. A very hopeful new possibility out on the horizon.
Would you please tell us your husband's age and your location in the US? Also his treatments here in the US, PSA and Gleason, which treatment facility, and doctor's name(s)? All info voluntary but it helps us help you and helps us too. If you do respond please respond on a future date and NOT to me. Thank you.
BTW quick look and I thought your user ID was blueGello. (Hospital Jello)
j-o-h-n- has asked for info about my husband's cancer. First, I would like to ask a simple question. When prostate cancer turns into lymph node cancer and bone
cancer is it still prostate cancer? Will lutetium attack those new areas with equal vehemence?
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