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.