Consider this your official Debbie Downer report on our foray into the wonderful world of radionuclide treatments. We traveled to Univ. of Heidelberg in May where my husband received his first combo treatment. The doctors there informed him that he was an exemplary candidate for the treatment since his cancer put off mucho PSMA. The only anomaly was his PSA which was low, only 5, for someone with such a high cancer load (extensive bone mets, lymph and lungs). The Germans were really puzzled by this (about as much emotion as we could get from these guys.) But they concluded that my husband's PSA just wasn't reflective of his cancer and said that it could very likely go up after the treatment as a result of the amount of dead cancer cells that would be in his bloodstream.
The Heidelberg clinic was interesting and in no way resembled an American hospital. Rather, it looked more like an office, a messy one with papers and boxes and other effluvia on desks and in storage closets and offices off the main hallway. All the furnishings are low budget and mismatched and there didn't appear to be any particular plan or effort toward sterility except for the covering of shoes with disposable covers to protect against any radiation on the floor. There was no nurses' station, no high tech equipment, no cameras. After a consult with the drs, who looked about 25 years old but who spoke fluent English, my husband, David, was ushered to his room down the hall where the nurse instructed him to put all his clothes and belongings in a closed cabinet so they wouldn't be exposed to radiation. Any clothing he wore over the next three days would have to be thrown away or sealed and then taken home and washed separately. We opted for disposal. Ditto for grooming supplies. David asked for a hospital gown since it isn't customary in Germany to issue those to patients. The room was bare-bones with a bed, a cabinet, a table, a television and a calendar nailed to the wall. There is no A/C. The bedroom area was separated from a small visiting/chair area by a half wall containing lead that I was required to stand behind when I visited. The dr injected his IV with the radionuclides and then we all left as my husband became Ultraman and his 2+ days of isolation began. During that time the only contact he had with hospital personnel was the food lady who brought the requisite German breakfast of bread, cheese and cold cuts, a hot lunch, and then a dinner that was an exact repeat of breakfast. My husband was not happy. At night there did not appear to be anyone on the floor which was alarming. What if there was a fire? What if a patient went into extreme distress or had a stroke or embolism? I guess you're on your own. The German way is certainly not the American way---in a lot of ways.
David's reaction to his first treatment was pretty bad, much worse than he had from chemo. Nausea and vomiting, diarrhea, extreme fatigue, depression, loss of appetite, pain at tumor sites, memory loss at times, frustration and anger and even violence at times. The psychological symptoms were the most disconcerting as we weren't expecting them and didn't know how to deal with them. We emailed Heidelberg and their theory was that David was either suffering from a syndrome called tumorlysis where the dead cancer cells build up in the bloodstream to the point that the kidneys can't filter them out fast enough OR tumor progression. Gee. So helpful. But we were to find going forward that that was pretty typical of the German bedside manner. At the four week mark David's symptoms abated so we concluded he had tumorlysis. He felt great. He was thrilled! He was sure the treatment was working and we planned our next trip in July.
But David's high was short-lived. Two weeks before we left for Germany for his second treatment he began having bone pain and became short of breath, signs that the cancer was progressing. He didn't want to admit it but I knew it. His pre-treatment bloodwork showed an increase in PSA to 12.5. The Germans advised possibly not coming. But David adhered to the Germans' initial statement that his PSA might go up due to an increase of dead cancer cells in his bloodstream. We kept to our plans and left for Europe on July 1, touring with our daughter and niece before he got his treatment in Heidelberg on 7/11.
This time the young German dr was less than forthcoming with information. We got the impression that he was going through the motions. He said the gamma scan the morning after David's injection would give more info. The next morning I didn't hear from my husband. Finally, I texted him and got the news: there was no change in the gamma scan from the first treatment. Also, the blood test now showed his PSA at 32, an increase of 20 pts in just over 3 weeks. He was despondent. The young German dr delivered the news in a perfunctory manner but could tell my husband was very upset so he went and got his supervisor. The supervising dr., a regular Marcus Welby, went on to lecture David on possible reasons that the treatment didn't work--even though he had looked like an ideal candidate. He suggested that David go back to the States and have genetic sequencing done on his cancer DNA to see if he possibly had a somatic mutation which would have been a reason the radionuclide treatment didn't work. In the case of such a mutation, Dr Distemper recommended David try a PARP inhibitor. Then he went on to lecture David on his fragile medical state, telling him that he could die any second, that most cancer patients don't die from the disease but from some other complication. "You could drop dead suddenly from a heart attack, a stroke or a pulmonary embolism," he said. Then he related a story of a patient who came for treatment who had a PSA of 30,000; he was dead by the next day. Also, this dr had a patient who fell and broke his leg. Because people with bone cancer can't heal their bones, he died by the next day. So, he told my husband, you must be careful of falls or you could die. And on that uplifting note, he left the room and the young dr pulled out a strip of anti-nausea drugs, trimmed off exactly two tablets, gave them to David and left.
When the nurse came in to help my husband check out, he asked David when his next treatment date was. "They didn't give me one," he said. The nurse's reaction was well, nice knowing ya! and quickly exited. Clearly, the nurse knew what that meant.
Our trip home was not cheery. We missed our flight by 5 minutes due to all the jolly cultural anomalies like buses that don't really drop you off where you're going, lack of services for the handicapped (like elevators in the airport, i.e. an elevator going DOWN but no corresponding one at the end of the path going back UP) and the resultant fall of my husband down a 3 flight escalator which, luckily, I was able to run up and catch him in time. We had to stay another day in a airport hotel and were treated to yet another meal of fried meat cutlets, pickled salad, fried potatoes and Quickrete strudel. Luckily, David was in first class coming home because the side effects manifested in fevers and flu-like symptoms and nausea. He was able to lie down. For that, I'm grateful.
Now we assess what our next move is. David's cancer symptoms get worse by the day. It is wrapping around T7 and impinging on a nerve now. We are meeting with an RO at University of Cincinnati Barrett Center on Friday to see what he thinks about radiating it. All the wind is out of my husband's sails. He put all his hope into the radionuclides. Now we don't know where to turn. If anyone has any good recommendations, I'm willing to listen.
Sorry for the long, long post. But I wanted to detail our experience, even though it turned out negative. There is so much discussion on the board nowadays regarding Lu-177 and so many people considering it that I thought I should include our experience, particularly since it was the combo treatment. I don't want to discourage anyone else from trying it, and I sincerely hope it works for all who do try it. But be prepared that even though it might look like you are the perfect candidate, it might not work.
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Mohopes
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I am so sorry to hear you and your husband had to have such a horrid experience. I can hardly believe this as think the Germans are always so efficient.
That is truly disconcerting for those thinking of getting treated in Germany with that combo. I am really sorry that you and your husband had to experience that trip and treatment. I have heard discussion here that low PSA (with heavy tumor burden) may have to do with some mutations but I am not well versed on the subject. There are many who are and I hope they will respond. Thank you for the time you spent outlining your trip as I know it must be painful to recreate. The very best to both of you!
MeliaQuinn, I realized I left out a really important part about the second treatment. The nurse came in and injected him in the stomach with a heparin shot. This was different than the first time and with no warning. Clearly, they hadn't reviewed his chart because my husband is already on the blood thinner, Eliquis. (He's also on Celebrex which has a bloodthinning effect.) The next day he told the young dr. he wasn't supposed to get the heparin or he could bleed to death. The dr assured him he changed the chart. But then the nurse came right in afterwards with the needle AGAIN! Plus, David had to endure a lecture from the older Dr. Gloom about how heparin was a superior drug and that that's what he would have had David on and that Eliquis was too untried and new and that Americans took too many chances with medications, blah, blah, blah. Well, maybe, but they have more protocols for reading charts.
Sorry you had to deal with that all on your trip of hope. I think many of these clinics popping up in Germany now are just cash grabs. While they do give you the medication you paid for, they are not truly giving you "care". The majority of the money is going into profit and not back into the clinic. It's like many of the stand alone emergency care clinics pooping up here in the US.
I hope things get better for you and your loved one.
BarronS I can’t speak to all the clinics in Germany but the reason my husband selected the Univ of Heidelberg was because that was where the Lu-177 treatment was originally pioneered. But perhaps he would have been better off following the scientist, Dr Baum, who is now at Bad Burka.
What is CAR-T? Also, regarding the high dose testosterone, does it make a difference if Zytiga failed? Does that have any predictive value as to whether or not the high T would work? Of course, in David's case, we can't know for sure because he only took Zytiga for 23 days (with no success) before he went on to emergency chemotherapy. He learned later from the Accredo rep that the Zytiga script had been written wrong--1 pill 4X/day instead of 4 pills/once a day--by, presumably, his first MO. So there is no way of knowing if the Zytiga really failed him or not. We're not sure if it ever got to therapeutic dose. The guilty MO has recently told him it didn't make any difference, that he still had the 4 pills per day in his system, plus David's cancer was the most aggressive he'd ever seen in his career (what is with these bedside manners??). However, the drug rep, my brother and internist, and his wife, a PharmD all seem to think it made a radical difference. When he got emergency chemo at MDA at New Year's they thought that David never should have been put on Zytiga to begin with, that his cancer was already beyond that point therapeutically, and pretty much said that his original MO screwed up. So, not sure what to think on this point. So if Zytiga sensitivity is predictive at all of high dose T success, I guess we don't have a clear idea going in.
Hi, hopefully some good news for you here. Zytiga is a rare drug that when taken with a low fat breakfast such as Greek yogurt, you can get the same benefit with 1 pill 250mg, as if taking 4 pills a day. You can confirm this with your MO and/or a few google searches.
If you can afford it, I think a cell-free DNA test (like Guardant 360) is a good idea. Biopsies can be hit-or-miss, but cell-free DNA tells you about the most active tumors - it is sort of an average. He has some of several kinds of tumors - some are PSMA-avid, some put out low PSA. Maybe a PARP inhibitor, maybe carboplatin, maybe Keytruda, maybe something in clinical trials now.
Thank you to you both!! No matter how long this was it's of interest to me. I too have low generated PSA and lung metastasis. Every monthly visit to my oncologist we talk about it. I read with interest anything lung and low PSA. You both are a blessing for sharing. Fight on. Michael
I am so sorry. I don’t mean to freak you out. I didn’t realize there were others who had had unfavorable experiences at Heidelberg. Is it too late to switch your paperwork to Bad Burka or Munich?
Thank you so much for your honest opinion and details. This is exactly what I need to hear from people on this board with real experience. I cannot put my husband through that in his condition now with Xtandi failing.
I wish you and your husband the best.
Thanks for your very clear depiction of what your husband experienced in Heidelberg. I know I have been interested in going there for the combo treatment and while I recognize it doesn't work for everyone I thought it was going to be more patient centered and state of the art. Super helpful to have your well written explanation. All my best to your husband
One would hope there would be a happy medium between the Shangri-las that pass for hospitals in the US where the price of healthcare keeps escalating and the spartan “care” offered in the drab, less-than-confidence-inspiring setting of the German Clinic.
Thank you for your very interesting post. Sorry that things did not work out for your husband. I too have undergone 2 infusions of Lu-177 in Bombay and they have been a total failure. My PSA has risen from 16 (before infusion) to 46 (now after 2 infusions and about 100 days since the first infusion). Mets have increased in size and qty. Pain in the skull tumor increased to such an extent, that I am now currently radiating my skull. The pain has reduced since I began radiation.
I am considering doing Ac-225 in South Africa if a) they accept me b) the price works out. Last throw of the dice, so to speak.
I truly hope your husband finds some relief. All the very best.
Hi Whatsinaname, I've been wondering how your Lu-177 treatments were going, so sorry to hear you have to deal with yet another treatment failure. You're a very nice person, and deserve a much better response to treatment than you've been getting. Glad to see you're still participating in the forum!
Thank you for your very kind words. Yes, ALL treatments thus far have been of no use to me. I have done radiation of the prostate and the L4 vertebrae, ADT (first and second line), chemo (docetaxel) & Lu-177.
My quacks tell me that I still have enzalutamide and cabazitaxel left. Then, immunotherapy, even though my Foundation One report categorically stated that immunotherapy would not work for me.
For the moment though, my biggest success is the radiation to my skull. The pain has eased off considerably and I am tremendously relieved.
The amount of money I have spent on cancer treatments alone in the last 18 months is in the region of INR 3,000,000/- a lot of money by Indian standards. And, then to have every treatment fail, one after the other, is sad I try to keep a smiling face, though, I sense, I do not have too much time left to live.
Cheers, tom67inMA !!! All the very best to you !!!
Sorry to hear that your husband too has failed every treatment. The difference is that he has been fighting cancer now for 18 years, whereas I have been treated for just 17 months. And, I am not yet 63 complete. But, that's the way it goes
Would it make you feel any better if I pointed out that I'm only 51? Probably not. I look at 20-somethings and want to scream at them "Don't waste your youth and health while you have it!"
I was aware that you are 51. But, you are responding to treatment extremely well, as you yourself have pointed out.
You could have been in my shoes IF in the 9/10 months or less that you have been taking cancer treatment, everything had failed miserably and you had virtually run out of options.
Personally, I have absolutely no hassles with youngsters enjoying themselves to the hilt. You only live once. Might as well enjoy when you can. At least there I can say with complete honesty, that I had a fantastic life right up to 17/18 months back. Even now, things are not that bad, but certainly quite different from earlier.
It is difficult to stay positive when everything is failing. We are in the same boat. My husband was diagnosed 10/29/18 at age 58 and so far everything has failed. Fighting this beast becomes your life, your consciousness, it’s always at the forefront of your mind. Our 17 year old daughter refuses to even eat dinner with us anymore because she can’t stand the “cancer talk”. So hard to quash it—we do it even we aren’t aware! Feeling sorry for ourselves can become a pastime if we’re not careful. I feel like one of my roles as caretaker is to help my husband keep his head above the waters of despair. This forum helps me do that. I am forever grateful to all of you who share stories, encouraging words, research and information. We couldn’t have made this far without you.
Yes, Mohopes, whatever you have written is very true. My wife and myself make conscious efforts to keep the "cancer talk" to the bare minimum. We talk about places we have been to and could go to on holiday, restaurants (we are both foodies), listen to music, read a lot, etc, etc. Cancer talk......only as much as required. Otherwise, it becomes your life.
Enjoy life, Mohopes. And, all the very best to your husband. Cheers !!
Remember they are doing Ac225 at Fortis in Delhi now Whatsinaname. I have my first treatment scheduled for September 5th. They only do it once a month since the actinium comes from Germany and they do everyone that is having it that month on the same day. My onco at Medanta is working with Dr. Ishita Sen at Fortis because they don't offer it at Medanta. They have been doing it since 2016. nuclearmedicinetherapy.com
You can Whatsapp the doctor but for those in the states remember Delhi is 9 1/2 hours ahead of the east coast this time of year. She will get back to you if you leave a message. Fortis is a good private pay hospital in India.
Thank you very much, Chris. I will e-mail them today itself and possibly call them after that.
Would you be having any idea what is the success rate (meaning what percent of patients actually had their PSA falling and disease regressing) for Ac-225 ??
Thanks again, Chris, much obliged. If Delhi is good, it will be far cheaper than South Africa. The game drives can wait
I imagine their success rates are similar since they are following the German guidelines. Dr. Sen did tell me there is evidence results are better if the patient is on immunotherapy, but nothing proven. I am on 2 immunotherapies at present in APCEDEN and Keytruda so I am hopeful. My SUV is very good but I know nothing works for everyone. If you want to discuss the APCEDEN vaccines with my immunologist let me know and I can message you his Whatsapp number. They have an August 7th date I believe, but since I am very stable for 2 years now I chose September 5th so I can have more vaccines made during the same trip since it's so far for me and all the airlines quit flying direct because of the threats we've made to Iran and the planes they use don't have big enough gas tanks to reroute around Iran, making the trip 20 hours one way now stopping in Munich.
The reply from South Africa finally came through. After 15 days. They have accepted me for 23-25 September (dates chosen arbitrarily by them). But, they have not told me how much it will cost, the side effects, etc, etc, etc.
I am not keen on doing my treatment with such people.
It could be, I am not sure, but in Delhi I just paid for it so there was no placebo, plus I got it over 2 years ago. From 212 PSA, Gleason 9 in Aug 2914. When I started just the vaccines I had tumors in my cheekbones, spine, sacrum, and so many around my heart it was hard to even see my heart on a PSMA PET scan. I still have the prostate tumor to be flat out honest, but feel great and can work like a dog in our business again which I didn't think would ever happen. APCEDEN and the Ac225 are available about 10 minutes apart in New Delhi. I am aware I got lucky it worked for me, but am hopeful since my SUV uptake is very good that there's a chance this may give me a few more years. Best part is there's no side effects with the vaccines except tjey make you feel better. I know I am going to have some side effects feom the Ac225, but I have to give it a try. Plus, Dr. Sen told me there is evidence, although unproven that Ac225 works even better when the patient is on immunotherapy, and I am on 2 immunotherapy treatments at present. If anyone should go over there and I happen to be there I'd be happy to show you around. I will be this time from August 27th-September 9th. Hoping for the best. Last PSA last Thursday came back at 1.8p, alk phos at 56, and testosterone at 907 and I feel kind of guilty for saying this, but I feel great. Five years out August 8th!!! NEVER thought I'd see it I was so damn sick.
Chris
PS. APCEDEN is at APACbiotech.com and Ac225 is at nuclearmedicinetherapy.com
I truly hope it lasts, but I have my life back at least for now. No Lupron since January, 2016 due to almost killing me with kidney failure.
Hi Whatsinaname,... I also was wondering about how you were making out with your treatment with Lu-177.
Have been meaning to reach out to you... So very sorry that the treatment did not work out. My husband is going for an up to date bone scan soon and then after that, we will be off to get the PSMA scan.. Fingers crossed? I'm trying to keep positive, it's hard at times.
Please keep me and others here posted as to how you are doing.. Good luck with the Ac-225, if you do deside to get it.
I don't ever intend throwing in the towel without a good solid fight. But, when you are whipped, smashed and then pounded to the ground and you cannot get up even though the referee has counted you out and then some...... I will accept gracefully that cancer has thrashed the shit out of me. Excuse the straight talk, please.
Mentally, I am prepared for anything and am fairly strong in that department
On that cheerful note, I thank you once again Lynn for all your gracious support and encouragement. Thank you very much, indeed.
Hi Carlos, ... Just read your reply, I really felt like crying...I know where you are coming from...I've watched my husband through the years, with all the grueling treatments/operations etc. It's been a long hard journey... Such a cruel disease. Such a waiting game.. My husband Sam before this cancer that robbed him of everything, he was a strong, healthy guy. He had his own construction company for years.
Sam is also mentally strong for what ever happens, I'm not... 😢 Waiting to hear when we will be off to get the Lu-177 ... It's our last option.
maybe some more chemo, that would give him three months.?? Hate this cancer, what it does to a person, both mentally and physically, it destroys the person and there families. Carlos, I know you are a kind good person.. I share all your feelings, frustrations...hate cancer!!
Keeping you in my prayers.🙏🏻 I'm hoping for some miracles!!!
Thank you very much, Lynn, for your very kind words.
I do hope Sam manages do recover through Lu-177 or a combination of Lu-177 and Ac-225. Here's wishing both of you all the very best. Thank you very much again, Lynn, for your sincere feelings. Cheers !!!
My wife has asked me to thank you profusely on her behalf for all of your good wishes. So there you go : Thank you very much, Lynn. Lets hope a miracle saves both Sam and myself. Cheers, Lynn.
Apparently, you have to be careful in the German showers, as well. But so very sorry to hear of the terrible experience. I've actually been treated in some very poor ways here in the States, so one doesn't have to travel abroad to be treated callously. But really, bone pain and shortness of breath is a sign of cancer progression? Why did I not know this?
As a Pole, I'm aware a safety hazards that have marred the success of a simple German shower, with overcrowding historically being a tell tale sign of disastrous consequences. But then, I digress from the topic of this forum which is cultural differences leading to an uncomfortable stay, as well as bedside manor. Perhaps there are some success stories to be found!
As an afterthought, the one thing that struck me was that your husband's PSA was very low at 5, for a person with so many tumors. Yes, he was PSMA avid, BUT HIS PSA WAS VERY VERY LOW AT 5. I wonder if that meant anything, apart from what the Germans told you.
Yes, the Germans were a bit baffled by that. But according to members on this forum that might be one of the hallmarks of a somatic mutation in the cancer DNA. Further testing is warranted.
What a harrowing experience, I am so sorry for you. Many of us talk from personal experiences; on the contrary my Lu177 experience has been positive. I had a course of 4 Lu treatments 2 years ago which probably stopped my CRPC in its tracks for 1-2y (who knows). I had 6 or so soft tissue lesions in the pelvis which all decreased in size. My highest PSA pretreatment was 2ng/ml. I was Dx 9y ago, T3bM0N0, GL9. My belief is that this systemic treatment is most effective given early in the course of the disease following primary treatments, and for soft tissue lesions. I have subsequently developed bone mets. I hope you do find good follow-up treatments for your man. =Rob
Rob, I am very glad for your success. Sounds like you were one of the early pioneers. We really thought David might have an outcome like yours so it’s a bitter pill. Still, your success has nothing to do with our failure so we are grateful that the treatment is working for many and that there is another arrow in the quiver for the fight against this pernicious disease. I am sure there must be some validity to your hypothesis that there is more chance of success when using the treatment early on in the disease cycle. Once this beast gets out of control it’s like fighting a morphing hydra that knows all the secrets of your own body. It stacks the cards against you. So demoralizing! I wish you continued good health and success in taming your beast.
Ouch! Thanks for sharing your nightmare. Here is my 10 cent's worth of conclusions without the full facts:
FAIL marks to the Germans for giving bread and beer to a cancer patient! They should know that both are "cancer food" and thus a total NO-NO!
PASS marks for the Germans mentioning a higher PSA means dead cancer cells. This is actually the very first time I have seen an institution recognise this - PSA measures the KILL RATE and not the number of cancer cells.
Higher PSA from the isotopes DOES mean it worked and killed cancer cells. How many is another matter.
A PSA of 7 when the cancer load is obviously much higher (say it should be 50?) meant your husband's immune system was at such a low ebb it had little ability to kill cancer cells. They were thus free to multiply as his immune system was the only thing (now plus radiation) that can slow this growth. It looks like the cause is over-medication. Chemo (in particular) trashes the immune system for months and causes false low PSA readings. No need to look for exotic DNA and other far-out possibilities as the cause.
It is a pity you did not rather book into one of the German (or Malaysian - they are cheaper) clinics offering intravenous Vitamin C before going the radiation route. Find a supplier nearer home, as daily then weekly drips are what you should be looking at right now. Don't delay. Good luck!
Re your comment about PSA measuring kill rate, does that mean the higher the PSA is an indication the immune system is doing it's job? Conventional wisdom seems to suggest a high PSA is bad. Please elaborate.
It's not that complicated, and a lot of odd PSA measures only make sense if they measure kill and not cells. There are only 2 killers in common use that "spike" the PSA - Vit C, and radiation, and they are pretty much the only "meds" that actually kill cancer cells (other meds are to help the immune system to kill). Vitamin C via IV should give a higher PSA the next day if it is working, and the PSA declines from there. Half-life of PSA generated is two and a half days. Thus a quarter left after 5 days. Wait a few days to see the real result and "long term" trend. Lu177 should keep killing for a few days, so "should" look like it is a failure! Lu177 (when it works - it needs to get a good binding to the cancer or it will kill the good guys) may take weeks before the true low PSA levels show up.
The "residual" PSA is then the kills the body's immune system is making - the only number (and the changes in that number) that really counts in this game. It does usually give a good idea of the cell count as well, but only if the immune system is working properly. Thus a medication can "look like" it has worked because the PSA has gone down, but all the medication (like chemo) may have done is reduce the immune system's ability to kill and you are worse off. Two people with a PSA of 5 may not have anything like the same amount of cancer if one has a better immune system than the other - and the cancer may be growing much faster in the one than the other.
Could be that because this is somewhat of a support group, you are going to get a lot of the bad experiences. There are hundreds in each study that looked at Lu that have done well. You're just not hearing their stories on here.
I am so sorry that you had such a bad experience. I also thought Germany would be more hi tech and "luxurious". However my husband is being treated on ACT 225 at the University of Pretoria here in South Africa. It is a government, university hospital. Our first impression was also a bit of a shocker because it does not have luxurious items like Oncology rooms have. The place is clean and the the treatment area is an old hospital ward with chemo recliners in the room. (Sometimes when us spouses have to sit and wait for the husbands to have their scans, they allow us to sit in the comfy chairs). The waiting periods can be long. Since it is a trial, they only have a certain amount of the ACT 225 and sometimes it runs out so if you last in the queue, you could be told to come back the next day. The Professors and nursing staff have been nothing but brilliant and generally well organised. Hubby was on Zytiga when he started the trial in January with a PSA of 48. First scan in March showed drastic decline of PSA to 9 and almost NO bone mets left in spine and skull. Next treatment was in May. PSA had dropped to 2. Then we did another scan in June. Still 90 percent of bone mets gone BUT one hotspot reappeared on one vertebrae and still one hotspot in pelvis. PSA started climbing and today is on 14. The professor did not seem to be too concerned about rising PSA at this stage as he says it's lifestyle related ie) sexual activity. Only dietary comments they have is NO DAIRY. Side effect DRY MOUTH / ZEROSTOMIA. So eating a german kind of breakfast must have been very difficult for your hubby as the dry mouth kicks in virtually the next day after treatment. We have a what's app group with our fellow patients to compare side effects etc. After the 4th injection in July most of them said they felt awful for the first few days but my husband has been carrying on as normal. Ocassionally they all complain about pains at night but pain killers do the trick. We have been happy so far but of course the rising PSA is a concern. Some of the patients also came with PSA's in the thousands. Today the Oncologist is testing testosterone before they change to Xtandi.
Wow! Congratulations on the success so far! I hope it continues. It is weird how the different clinics have different protocols and advice. Clearly the Germans don’t think dairy is a problem since they bring it at least twice a day for meals. (In fact, it would be difficult to eat in Germany and follow an “anti-cancer” diet). They let you sit nearby while administering the Ac-225? That seems incredibly cavalier given the radioactivity of that isotope, especially during the first several hours of administration when the danger of contamination is highest. The Germans practically give the shot and then run out of the room. And no one comes back for a long time.
In Bombay, the only time my wife was asked to leave our luxurious room at the hospital was when the Lu-177 was being actually administered. This took a maximum of 30 minutes. She waited in the lounge. After the Lu-177 was administered to me, my wife was called back by the sisters/nurses (there are plenty of them, all through the day and night). What a contrast with Germany.
Btw, my wife had a plush bed in the same room that I was a patient in. The room had an A/C, two ceiling fans, attached toilet (with soap, towels, napkins) two large beds, closet for clothes, rack for luggage, flat screen TV, etc, etc, etc. The food was tasty and with a choice of vegetarian and chicken/fish. Breakfast was eggs (any which way), toast, cheese, jam, butter and a range of South Indian delicacies like dosa, wada, upma, etc, etc,etc.
German food is delicious but yes contains alot of dairy and processed meats like Bratwurst (yum). We are allowed in during the treatment as the Professors say that if it wasn't safe, they would all be in alien type suits with masks like you see in the movies. The only time the patients are seperated is when they are injected with Gallium for their scans. They are isolated for an hour before scan and hour after scan. Then given some liquid to pee it out before they leave the hospital.
I don’t think anything in Germany is luxurious! LOL! I don’t think luxury rates high as one of their cultural values.
David got the dry mouth side effect with the first treatment (of course, much more likely with the Ac-225 since it is stronger) and has trouble eating anything without also drinking water. We are hoping this improves with time. The Germans told us that the chance of it becoming permanent increases after four treatments.
WE are 4 injections in and the dry mouth does not improve. Now I cook soups, stews, anything with gravy. Hubby found that eating sliced juicy tomato on bread helped as well. Coconut oil in the mouth before bed keeps the mouth lubricated at night. Always carrying water and I have placed a bottle of coconut oil on his desk for during the day. Sometimes his tongue sticks to his pallet and he battles to talk. He enjoys an ice cold beer too. We have tried all the Xerostomia gels etc from the pharmacy but they don't last, just a temporary fix.
Oh dear! I am so sorry! My husband, too, is eating tomatoes. Also lots of fruit, anything juicy, cereal. He HATES coconut, though, so I don't think he'll go for the oil remedy. I heard there is something you can get at health food/holistic med stores that helps with this problem but I can't remember what it's called. I think Dave wrote it down. If I find it I will message you. In the meantime, take comfort that the treatment is working? The Germans told us that it could take a year for the saliva to come back. Boo.
So sorry to hear about your husband's bad experiences, but thank you for posting! It sounds like he's been through much worse than what I've experienced so far, with airline travel on top of the deal (I hate airline travel, particularly the bit with airports and security).
If I'm not mistaken, there's a bit of dark humor in there with the comments about food and every story told by the doctor ending in ".. and then he died the next day". My urologist is German, and everything he says is very dry but I'm beginning to think he has a sense of humor. After a particularly uncomfortable cystoscopy in which I screamed so loud my wife could hear me in the waiting room, he simply observed "some people are a bit sensitive".
Yes, gallows humor. Guilty as charged. But the German Dr really did end his stories with “...and then he died the next day.” My husband was dispirited, to say the least.
The last one just two days ago wasn't nearly as bad, just a bit of agony when first going through the sphincter. Within a few minutes I was given the all clear and was back at work about 30 minutes later.
Colonoscopy: Done under general anesthesia, looks for cancer and polyps in colon
Cystoscopy: Looks in bladder for cancer and polyps, no anesthesia, just a bit of lidocaine squirted into the urethra a few minutes before the procedure.
The hospital rooms in Germany are usually not well furnished but cost a fortune per night. Also there is no air conditioning since the special air conditioning systems for hospitals are very expensive and the health insurance will not pay more if the room has air conditioning. Due to the climate change there are much higher temperatures in the summer now than in the past and the lack of air conditioning is a problem. The food is also no good because the health insurance does not agree to pay more for food. In general the hospitals show a loss at the end of the year and get subsidies to be able to continue. However, there is always a nurse available and you have a button in your room to call her.
I am very sorry that the treatment did not work for your husband. Unfortunately it just works for the majority of the patients but not for all. One patient who took part in the VISION trial, mentioned in this forum that his PSA value continued to rise in spite of the treatment and the doctors refused to continue with the Lu177 treatment.
My understanding, as explained to me by people who live in Germany, is that the “health insurance” is the government which they pay for through taxes. If a citizen isn’t happy with the basic level of coverage provided through the government program, then they have the option of paying more to obtain private, better coverage. I am not sure how this would play into the conditions within the actual clinics, however. I have to say I was relieved that our stay fell between the dangerous heat waves this summer in Europe; I cannot imagine how miserable of an experience my husband’s would have been without A/C in 100 degree heat.
I do recall there was a button for my husband to push if he needed a nurse, but I don’t think they were very responsive. The one evening I left at 8:30 there was no sign of anyone on the floor and the hallway lights had already been turned down for night. It was desolate. Anyone could have come in or out without notice.
What you describe is the insurance system in Britain. In Germany, if you are employed, you have to have a basic health insurance and the employer will have to pay for half the cost of that. This insurance includes your children and your wife if she is unemployed. If you have a high income or you are employed at the goverment etc. you get a more expensive private insurance. The goverment will pay this for its employees.
In my case they locked the door to the nuclear department and you could only enter or leave if allowed to do so by the nurses. If you press the button in your room the nurse may be caring for a different patient and it will take a while until she shows up. They do not expect that there is a an emergency, just that the patient wants to ask the nurse to help.
I stand corrected. You do have to press a button to gain access to the locked door of the nuclear medicine department.
I described the system as it was described to me by a German businessman on the Deutsch Bahn. Perhaps the language difference caused gaps in my understanding. If you work for the government you get better insurance than everyone else?! Well, that sounds like the American Congress! Some things are the same the world round.
First, I am so sorry and wish I could hug you. I love the city of Heidelberg and we could have chosen this hospital but we will absolutely steer clear. I spoke to another lady and her husband that had a fantastic experience in Homburg. This isn’t the news I want to hear but greatly appreciate information whether it’s positive or negative. Thank you. ❤️
Might be worth having the genetic test for that mutation... it might mean your husband is one of the few who will respond to immunotherapy. Best of luck with everything and thank you for your honesty
I am glad that you shared this with the Forum. It is a grim story but one that needs telling. It sounds much like a Tijuana krebiozen clinic in the 60s. I have no basis for comparison as I have never been treated in Germany, nor visited it. As the others have pointed out, there are still things on which to hang your hope. I hope and wish for both of you a smooth path.
My experience with LU is great I am on the Vision trial I will receive my 6th and last infusion next month PSA went from 1460 to 60 and I feel great. My experience with Xtandi and Chemo left me week tired and I lost 20 lbs.My scans are stable.Can anyone tell me how long I can expect this to last?
That was an incredible report. Sometimes we talk about our problems at such an abstract level that we don't fully appreciate the real difficulties that each of us may go through in our daily life and our treatments. Your posting made everything very real.
I am sorry that you and your husband have had such an ordeal. For whatever they are worth, I think you both have the sympathies and best wishes of everyone in this forum.
Thank you, Alan. I didn’t mean to make our experiences sound any worse than anyone else’s—I hope my post didn’t come off that way! Oh, dear! Am I crying because we were fortunate enough to have the opportunity and resources to even go to Germany to try the radionuclide treatment? No way! I’m glad we did it! Otherwise we would have always wondered. I merely wanted to share our experience so that others might gather insight before making decisions or traveling. Personally, I like to be prepared before I go into an unknown. I don’t want to discourage anyone from going to Germany, only be informed. And this is only one person’s experience. Others will report differently, no doubt. I should also share that one aspect that made our travel challenging was my husband’s use of a wheelchair. If anyone else has that challenge, they can PM me and I can share more extensively about tips for handicapped travel.
I don't think your report was even the slightest bit making your experiences sound any worse than anyone else's. It did not come off that way at all. It came off as an honest and deeply perceptive account of one couple's experience in a complicated situation filled with hope, stress, and not a little disappointment. I learned a lot from it. I learned things that we should all be aware of when we choose to get this treatment, and when we recommend it to others - and that is just what you wanted me and others to learn. Thank you for writing it.
I am sorry that things went so poorly for your husband in Heidelberg. However I was there at approximately the same time as your husband and had a very different experience. Yes, the rooms are spartan, but this is more or less the German standard. My wife taught in a German school for a year and says the very same thing about the school, very bare bones with few of the bells and whistles of American schools. And yes, the food is terrible, but it's not unendurable and it's only for two days.
As for the doctors and staff, both I had my wife had quite positive interactions with both and encountered no rudeness or condescension, nor were we lectured to. We left feeling that we had been very well treated.
As to results, the combination of Lu + Ac lowered my PSA by more than 50% after the first cycle. Moreover the PMSA scan showed significant shrinkage of all known lesions. More importantly, my liver lesions, which were very evident on the initial scan, were undetectable at the end of the first cycle.
Everyone's experience is, of course, different, but I would have no difficulty in recommending treatment at Heidelberg.
Thank you for sharing your comparative insight. Perhaps if my husband had had your success with the treatment it might have colored our experience differently. Likewise, if you had NOT had success after two cycles like my husband, you might have been received quite differently the second time around by the Germans and would have received very dire advice and the callous dismissal that he did. I did not exaggerate or omit any remarks from the senior Dr (whose name I can’t remember but it wasn’t Dr Haberkorn—we never saw him at all). Nor did I make up their giving David heparin when he was already on Eliquis, a clear sign they didn’t read his chart. OR that the treating Dr told his supervisor he changed the chart to omit the heparin and then a nurse came in with another shot which showed that the treating Dr patently lied to his supervising Dr right in front of my husband. Nor did I say the food was “unendurable”; I implied that it was unpalatable and repetitive and unhealthy. I never said my husband was mistreated. I do think patients are neglected, radioactive or not. His nurse, Tomas, was delightful and did his best to make David feel comfortable, but he was the day nurse and after that attention was scarce. A thought to keep in mind is that this treatment program is still a research program. Patients are being treated on the basis of “compassionate care” but they are still guinea pigs. The clinicians are predominately researchers and once the guinea pig is no longer showing progress under the therapy they lose interest and eliminate him from the statistical population. Ultimately, it is a cold process but one we accept going in; we just tend to forget that part.
Really, I am happy for your husband’s good fortune and wish you continued success in the program. (If you travel at Christmas time I urge you to visit Strasbourg for its Christmas market; it is magical.). I have no doubt that the research drs at Heidelberg are competent. That was NEVER in question. And the hospital is very conscientious about refunding any charges not used during your visit, a practice unheard of in the U.S. My report mainly details our most recent visit, when the news was disappointing, and how events went during that time. It would be remiss not to report the cultural disparities in nursing care, drs’ bedside manner, the provision of post-procedure medication (two anti-nausea pills?) and environmental comforts to those members on the forum who have no idea what to expect in the line of care in a foreign country, especially if they haven’t traveled internationally before.
Thank you so much. I'm one of those that would rather hear the bad so that if we have to travel that route we're prepared. Our local radiologist is a great proponent of this treatment and talks about it every time my husband gets scans. He actually flies over with this patients (patients pay for it of course) and walks them through the process. We're lucky, so far, that my husband's cancer hasn't been too aggressive so we haven't had to take him up on his offer. Thank you again and I'm so sorry the treatment didn't work for your husband.
Wow! Your radiologist goes with his patients?! That’s really an amazing dr! I would think that would be a great comfort to have someone along who had a good working knowledge of the procedure and who could discuss it with the Germans in professional terms. It sounds like you’re in good hands.
j-o-h-n, yes, we are considering Sloan Kettering since MD Anderson pretty much said there wasn’t much more they could do for him. All they did was chemo, anyway, nothing too heroic although his inpatient care at New Years was exemplary. Really, MDA is like the Anti-Germany—it’s ridiculous! It reeks of money! (Spent and charged). But really I think we’d only be interested in Sloan Kettering if he could get in with Dr Morris. We’re tired of second stringers who “know all the same protocols.” We are also exploring a couple other avenues. But for sure we have to jump on this gene mapping thing. That’s our next step.
Thank you for the sympathetic words. Really, the clinic in Heidelberg wasn’t so bad as the word that the treatment wasn’t working. David would endure hanging if it meant getting rid of this disease.
Can’t comment on your first wedding but the WWII thoughts came to mind often. The “rules for the sake of rules” and “make sure everyone else is following the rules” mindset made me crazy! It struck me that the Millenials I know would have a very hard go of it in Germany! LOL!
All of these treatments are poisonous, pure and simple. Doctors rarely disclose this adequately and the patient is given false expectations.
There is a better way...I strongly believe the proper course of action when facing an incurable cancer scenario is alternative medicine and prayer. Search my posts for my recommendations. I am a clinical research scientist of 33 yrs with Stage 4 PCa. Feel free to message me if I can be of help. Only God can bring the healing you desire and the fear, worry and concern we face works against our healing.
Hi Larry, That’s interesting as today we told our brother in law that my husband is considering taking dog dewormer as pCa treatment as he becomes more desperate end stage.
BIL said he has been taking rat poison for years for his AFIB—Coumadin. He is 86 and very sharp.
I also take the dog dewormer fenbendazole (brand Panacur C). It is hit or miss wth PCa but worth a try! It could take 6 months to know if the dewormer med makes an impact. Good luck!
Thanks for the post. Many useful info to me because you gave so much detail on the treatment that most people receiving Lu-177 had not done before. I am not yet in the path of looking to Lu-177 for treatment (much less going overseas from the US), however, what you wrote will help others. One more thing after reading some replies is that going to name-brand cancer centers does not guarantee that you will have the best possible treatment. Follow the right doctor(s), instead the institution, otherwise you will get standard of care and not the best possible treatment.
Socialized medicine? But my wife spent three nights in a French hospital in Bordeaux in June for AFib and treatment was superb. Nurses were friendly and attentive and tried to speak English which was fun to watch . The Cardiologist spoke English. The facilities were spartan compared with US but she had a private room. I didn’t see any rooms with multiple beds. Meds cost 1/10th the US price. Haven’t received a bill yet for the room and tests. But I was in ER for potential blood clot for four hours. Turned out to be venous insufficiency not DVT. The bill was $142 most of which was for blood tests.
There are certainly arguments to be made for socialized medicine. I’ve heard great stories like yours and I have a friend in Ireland whose husband recently needed surgery and they were thrilled with the efficiency and results. The American woman living in Germany I sat next to on the plane had mixed reviews on the German healthcare system. But NEVER break a bone and have to go inpatient in Italy! My sister fell off a Vespa and smashed her tibial plateau and then found herself stranded in a Florentine public hospital for five days. For two days she was in a hallway. The rest of the time she was in a room of four with a teenage boy and a belligerent old man who kept cursing at the nurses. No one spoke English. No privacy. Food was good though.
I think there are vagaries in the systems depending on location. In your wife’s case, Bordeaux sounds spare but charming, and I’m sure the food was good. Sounds like a great story no matter what!
Yes it’s a bit scary to need to go to an ER outside the US particularly when there’s a language barrier. But the fact that the nurses were so cute and French is such a melodic language certainly made it an interesting experience! Plus I learned that translation apps can make communication easy. Just type in your language and the French ( or whatever is appropriate) magically appears and you’re good! 😂
So very sorry for your terrible clinical experience at the German clinic. It is unfathomable how you were treated. That on top of non responding. My heart goes out to you. Please fight on with all of the support you have.
For those looking into Lu-PSMA treatment abroad (as I am currently) I would say that the South Africa inquiry (Department of Nuclear medicine at University of Pretoria) did respond to my inquiry. They are indeed less expensive than in Australia: "47,419 SA Rand if isotope is procured locally = US$ 3,372. And 56,656 SA Rand = US$ 4,171, if imported due to non-availability locally." My inquiry to India (Fortis Memorial in Gurgaon near Dehli) did not even respond to my inquiry.
So I am going to choose Australia, assuming my 68 Ga-PSMA scan is reasonably favorable. - Dr. Nat Lenzo of GenesisCare, Theranostics AU. They charge around US$8,000 per Lu-PSMA treatment. They also have 225 Ac. I had a very good Skype consult with him that inspired confidence and answered all of my questions. Also sent me some good research that he is co-author on as well.
Just posting this for others who may be comparing such options.
Hello, and I echo the many comments above commiserating with you about what sounds like it was a terrible experience.
Since this post has turned into something of a discussion forum for ex-US Lu177 treatment options, may I suggest that Australia might be a good solution for those considering their choices.
Peter Mac is Australia's foremost cancer hospital and is heavily engaged in Lu177 treatment research - I know some of the leading researchers and there is no doubt they are highly regraded in the US and elsewhere....
And of course, the sort of cultural and language barriers you experienced would be much less of an issue in Australia.
Lu177 has been offered in the private sector in Australia for several years (MateoBeach references GenesisCare in his post above), but I suggest you first explore options with Peter Mac, which is a government facility targeting patients from all over Australia. Information for non-Australian patients is available at: petermac.org/location/melbo...
Having just returned yesterday from a few weeks hiking in the US, I can attest that the overnight flight from LAX is pretty bearable these days - and the A$ has taken a battering in recent times, making Australian treatment a more viable option than it was a few years ago.
I went to Bad Berka, and was seen by Prof.dr. Baum, and got Lu177 treatment almost 3 months ago. The hospital is in a beautiful setting in the country, and has huge atriums and rooftop gardens. The rooms are a bit spartan, but adequate. The dr.s and nurses were very nice and attentive, though they did not come in often, unless called, during the isolation period. The traditional hospital food really sucked, but I was only confined for two days, so could bear it!
I had a prostectomy 7 years ago, with a gleason 8, and high PSA of 7.4. Visceral abdominal lymph node mets (stage 4) were discovered by Ga68 scan, after my PSA rose slightly to 0.72 in November 2018.
I immediately started Lupron and Zytiga, which I continue to this day, and still hate.
A Ga 68 scan in Bad Berka showed reduction in my visceral mets, but a progression to a single bone met on a rib. Prof. dr. Baum said that since my tumor load was low and early, he would give one treatment of Lu177 (about $15,000 US), then monitor my PSA. He suggested no PSA test for 6 weeks, for the post treatment spike to settle. I have had 2 PSA tests since and are undetectable at > 0.02, as is Testosterone. It seems like so far so good!
I would highly recommend the treatment that I experienced. The hospital atmosphere is quite different than in the US, with a low key atmosphere. The various scans and workup seemed state of the art, and all of the staff were great.
After discharge, I stayed in the nearby town of Weimar, hotel Kaiserin Augusta, just across from the train station, where my wife spent the two days of my isolation, then two nights in Frankfurt at the 5 star Steigenberger Frankfurter hotel. It was over the top in luxury at a reasonable price. We wish we had spent more time in Weimar though, and less in the big city.
Only time will tell for sure, but I have high hopes of being in the 10% that dr. Baum reports as going into permanent remission.
Thank you for your report on Bad Burka. My husband has both bone and visceral mets. I wish David had gone to Dr Baum, no matter the hospital experience. It sounds like the food and isolation is about the same and I'm sure the technology is similar. I will say that the general areas of the Heidelberg Clinic were also nice, although I can't speak to any rooftop gardens or such. I really hope your treatment works and is permanent. I think the success statistics reported are a little bit all over the board and are causing people to either panic about getting the treatment or false hope or, maybe, exaggerated hope. Heidelberg never used the words "permanent remission" but, rather, said that the treatment generally added eight months to OS. That is, of course, an average. I think (I'm going from memory here) the numbers went something like this: about 60% of men respond to the treatment. Of those, about 30% respond "significantly" ( so 30% of that 60% is 18 men.) Of those 18, only 15% have significant, lasting success (that would be 2-3 patients of the original 100.) They did not specify whether these statistics applied to Lu-177, Ac-225, or the combined treatment. We have no idea why David's treatment didn't work as his PSMA avidity was off the chart. We are investigating other possibilities.
We stayed at the Steinberger hotel at the Frankfurt Airport when we had to stay an extra day after missing our flight. It was the nicest hotel we stayed in during our two weeks in Europe and the least expensive!
I believe there were some numbers released recently about the success rate of the Lu177 treatments in Germany. It was posted on here. There was a lot of variation between those who previously had chemo vs those with less treatments. It was the only time I had seen any written statistical results and I believe it may have been from Bad Berka facility.
Alas! I wish we had seen those statistics before our venture. My husband still would have opted to go through the treatment given that MDA told him they didn't have any more they could do for him. It seems that the success for American patients will be skewed more toward the negative for the time being as, in most cases, chemo is a therapy already given before patients opt for the radionuclide treatments. In fact, I think the VISION trial requires patients to have had chemo before qualifying, which makes no sense now given the German findings. The Germans are ahead of us (in their own discovery--what a surprise!) yet this nationalistic mindset in medical care keeps our medical industrial complex from exercising any common sense or humility for the benefit of patients, cost savings or time savings. So frustrating.
I have been there . PSa went from 365 to 51 after 2nd trip. Returning for third 11/10. Accomadations are bare but ok. Food not bacon and eggs for breakfast but I was told the hot meal in This area of Germany the hot meal is lunch. Doctor there said my PSMA was very high and they will melt my cancer like butter in the hot sun. Not disapointed.
Psa is now ONE. Going back for the forth time 3/14. For the last time. I think the lack of bedside manner is there fear that there english is not good enough and therefore seem not to care. Also, most of us who go to Germany are elderly and they make think we do not think highly of them.
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I try to keep a smiling face, though, I sense, I do not have too much time left to live. 
LU-177
LU 177
The prices for Lu 177 in Germany
