I am new here. My husband is Discharging today after first Lu 177 treatment. Heading to hotel two days then flying home to Minnesota USA. What can we expect with side effect symptoms? He is flying home with his brother. We are all in the dark. How should we prepare to care for this man?
First Lu 177 Heidelberg discharge - Advanced Prostate...
First Lu 177 Heidelberg discharge
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MNBoat
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I've had the LU177 in NYC. The side effects are obviously different for everyone, but mine were fatigue and mild nausea...not bad at all.
Hi MN,
I received my second LU177 injection at the Mayo several weeks ago. As noted in other post the side effects will be different for everyone. For me my first injection gave me severe fatigue for about 4 days along with increased bone pain, and some nausea. After the second injection I’ve felt great with no real side effects.
From a results standpoint my PSA dropped from 110 to 37 after 6 weeks. Great results as prior to treatment my PSA was tripiling every 3 weeks.
I know my hemoglobin dropped some after treatment so may want to watch that.
Hi! Hope you are doing great. Curious how you are doing.
Paige20180,
I completed my 6th round of LU177 PSMA in early May and have been feeling great. The treatment worked very well for me but lowering my PSA and resolving the vast majority of my bone Mets. My PSA has been increasing again and I had 3 Mets that I’ll finish treating with SBRT today.
Some would say the LU177 didn’t work for me and I would say it worked wonderfully for me. Prior to treatment I had bone pain, bone Mets from head to toe and a PSA of 110. Now 3 Mets PSA of 4.6 ( hit a low of 0.4 during treatment).
I have tears reading how you are doing! I consider it a great success your pain has been reduced and if Mets can be slowed and reduced where spot radiation can kill this crap, that gives me so much hope. Thank goodness you are doing well. Thank you for the update!
This information sheet is from a different clinic but they have a section on:
"How A Patient May Feel After Treatment"
psmainfo.org/post-treatment...
Thank you so much! I wish my husband would have received treatment at this facility- they have helpful information. I must learn more about this since we must move forward after the first injection and wonder about returning etc. Traveling to Europe for your first time ever while sick and being in the 'dark' about what to expect has been daunting. I am going to airport right now to receive my husband back to Minnesota. OH! They missed connecting flight due to customs giving them hard time with radiation!! What a long trip back to MN
The link l posted also describes these problems when returning to the US
Hi MnBoat; So strong U R with your mate. I am in Mn. also. I am considering LU177 treatments also. I am completely overwhelmed to figure out all of the logistics that it takes to achieve this goal, be in Germany or Australia. One issue for me with Mayo is that I believe they only want trial subjects who have mCRPC. My cancer is all in my lymphatic system in my groin, lower chest and a few spots in my left shoulder. I would like to receive Lu177 without having taken Homones nor Chemo yet. I would sure welcome a chance to talk to you about the myriad of questions I have as to pull of a treatment in a foreign country. I am Docrok, so please respond as your precious time allows. A fellow Minnesotan.
I travel professionally for work. I would be happy to help with an overview so it may be less daunting.
Hi paige20180. Hi there. TX for the offer to help sort things out with the travel. I did decide last Spring to go to Sydney, Au. for my Lutetium-177 treatments. I have completed two of them now and unfortunately, have #3 planned for October 4th. I have experienced some success with the first two treatments, and more are warranted. So any advice from this information U wish to share would be welcomed.
TX much for your interest and offer paige. docrok
Wow you are a pro now having been twice. I was thinking you may have not traveled much. I worry about people being afraid to go abroad and then they don’t get treatment.
Yes and number 3 is scheduled for Oct 4th. Recent Pet scan found progress with soft tissue lymph nodes shrinking but bad news, 3-5 bone mets found now. I am in active treatment so hope for best. Tx for your interest.
We are right there with you. Just had 2 bone Mets radiated but PET conCorning for tiny specs in the presacral that could be inflammation or cancer. We are sitting on pins and needles waiting for a PET 11/12. Meanwhile doing Vitamin C infusions, diet changes. Anything we can think of.
I am so thankful your lymph nodes responded. Thank goodness. You have the number of Mets I have read can be treated and you are still curable according to our doctor. You’ve responded well so I have all the faith in the world you will beat this crap! From what I’ve read three treatments are pretty common and up to 6 treatments though it’s sure an inconvenience may be in order. I pray this is over for you soon😘. Looking forward to hearing great news! Hang in there❤️❤️❤️❤️
Hi Paige:
TX much for your supportive words. Yes time will tell as the trope goes. I want to be as optimistic as U R in that the bone mets can be successfully treated and minimized. I hope that it is serendipitous that I am in active Lutetium protocols and now may be able to "nip these bone mets in the bud." Maybe wishful thinking. Anyway, TX Paige for the encouraging words.
Doc
Doesn't mention tumour flare up which are MO has just documented which can pretty full on.
Can you please describe this more? We’d like to know the pros and cons. Thank so much.
I would echo the comments about the idiosyncratic nature of responses to the treatment. My husband had his second cycle of Acc-225 + Lu-177 at Heidelberg two weeks ago. Fatigue, sometimes being nauseated (though never actual nausea), lack of appetite (made worse by the xerostomia), and continuing back pain (that he had going in to the treatments) are the primary issues. His oncologist has been great about prescribing pain meds and he has a nagging wife <grin> to help keep him drinking water and eating something -- mostly yogurt and other soft foods. A dog on his lap has also proven to be rather soothing!
If your husband has not yet come home, ask the airlines for a wheel chair for both the Frankfurt and home airports. Also tell him and his brother to be carry all the paperwork from Heidelberg with them for getting through passport control. Those radiation detectors do their job. After the first treatment, we flew into JFK and had to go to a separate room to be questioned. The paperwork at first was not satisfactory. Then I saw a sheet of notebook paper taped to the wall with "LU-177" written on it. After pointing that out, all was fine.
This time we flew in and out of Boston. The folks there were even more concerned. Again, we went into a room and were held there for some time. A security guard with a geiger counter kept coming in and out. Again, the Heidelberg paperwork was helpful, but not considered conclusive. Eventually, a security guard came in to say that she had dealt with someone coming back from a similar treatment a week ago. So we were on our way.
Both these encounters were pleasant and the folks we dealt with were respectful and courteous. But it took much longer than expected to clear passport control. Again, I was very grateful that we asked for a wheel chair.
Of course, YMMV.
Chewing cherry tomatoes helps with dry mouth. Also lemon juice.
If you have Global Entry, would there be less scrutiny? On one hand I’m glad they are concerned about a dirty bomb. Since the life is 6.6 days would it be better to delay coming home to allow the radiation to decrease?
Global Entry did not make a difference. My husband was emitting enough radiation to set off the detectors worn by almost all of the guards. Once we knew what to look for, we could see the lights flashing! That detection seems to trump (sorry) everything else -- understandable.
I don't know about waiting a week. We just delayed by one day (after release from the hospital; the stay itself was already about a 48 hour delay).
Perhaps the more important consideration is how the patient (you, your significant other) will feel after the treatment. Patrick just wanted to get back home and to his own comfortable surroundings. We stayed in a great small hotel with wonderfully helpful people. Still, never as relaxing as home. So it depends on your situation.
I totally understand wanting to be home! Thank you so much for the info with customs. It’s so much better to be prepared for as much as possible! Best wishes❤️
I am scheduled for a total of 4 injections with up to 6 possible in the study.
I did just have bone scans last week and they still show wide spread bone Mets but it will take some time for the bones to heal so I’m guessing the next scans in January will show improvement.
I will keep posting as I know this is and area of high interest. I know the more information we can post and gather on results and the treatment in general will help everyone.
I will have a Choline PET on the 19th with my third injection scheduled for Dec 28th. While my initial scans show a lot of metastasis still they said to expect the first scans to not show much change
I definitely will need to talk with your further. Guess where they are right now??? Customs in Atlanta and missed connecting flight.
Sorry, I just saw this, but ,... aargh! So sorry your husband and his brother had to go through this. Hope both are home now and resting and relaxed.
Seems like they need an international hospital wristband with a bar code that customs can scan that goes to a data base that says yes this a cancer patient that just had radioactive treatment. Does your husband look like a terrorist?
Great idea.
I am seriously considering this treatment. PCa is now at 180 . On xtandi and fermagon.
How do I set this up?
Thanks
Tonto
I'm not personally impressed with xtandi, did very little for psa and turns the patient into a state of drossiness and confusion.
I can give you my contact info in Homburg if interested.
Hi Mn. Boat: I am living with PC for 18yrs. Psa doubling in 1 month. Had Pet ,mri PSMA imaging in SF in 11/18. Considering Theronostics in Au. for treatment, not Germany. I am living in Mpls. so would like to be able to talk with U about your experience in Germany with your husband. Write me back and I hope U R interested in sharing mutual experiences with Lu-177. TX much. Warming up from our recent deep freeze weather? I am slowly thawing out. Best regards; docrok
I am afraid I will not be helpful to you. My husband(age 68) had his one and only treatment Nov 29 and died Jan 1. My main message is Timing Is Everything. The doctors will not decide for you that the time has passed. You have to be honest with yourself. In addition, you must get good oncology support to be successful. You can still get treatment and have oncologist.
He worked very hard to get this treatment with a number of horrible derailments due to poor medical care. He was ready to head out for the trial and suddendly had kidney failure from incorrect prescribed medication regime for bone pain. If that had not happened in August, I believe he would have had a least a bit longer to live. Once his blood count improved despite all predictions, Mayo had very poor customer relations. So my husband headed out to get Lu177 privately.f He couldn't wait. He went to LA for PSMA. Living was what he was all about. He was far too frail to tolerate the foreign travel. Other than some loose bowels for a week he did not seem to have any negative reactions as far as I can tell. He came home with serious swallowing problems that had intensified. I don't know if that was due to Lu177. He came home unable to eat or drink without lots of problems. His blood work never got better. It was irresponsible of Germany to accept him as a patient. Mayo Clinic had been wonderful with his care for 10 years. He was told he had only 4 years when he first went there for care. But once his PSA and scans looked horrible in July they left him hanging! At least they should have helped him get established with a good oncologist. He was no longer 'research exciting' I believe.
My advise get your treatment asap since your PSMA will not stand up much later.
Be strong when you get it. If the cancer is ravaging you from within focus on
palliative care and getting you relationships and business in order.
With or without LU177, Find an oncologist in Minneapolis that will treat you and your support system. I can recommend someone. My husband avoided palliative care because he was told by a random Mayo nurse it would exclude him from trials. This was wrong and a real shame. Hospice never got to really help us and palliative care was essential for last 3 months. The Palliative care team supported all my husband's desires to pursue treatment. He wishes he had started with them sooner.
You have to accept death and continue to fight. My husband never accepted it until he was too weak to gather the support he missed out on. So go try it out quickly!
Bless you. I hope you are doing as well as can be expected. You are a great person. It looks like you supported him 100 percent. Thank you so much for trying to help us! We are at Mayo too and I can’t tell you how much I appreciate you making me aware of these things. You may give my 12 year old a dad longer. Thank you again and big hug to you❤️
Hello Mn Boat: Thank U for your honest and candor re: all of this. First of all, my condolences with the loss of your husband. I am no stranger to death given the losses I have endured with my time on this planet.
I am working on getting connected to some place that will treat me with Lu-177. All clinical studies in the USA, which is the only way one can receive Lu-177 here in the States, for subjects want more advanced disease dudes vs me. I am a biochemical recurrence, not having received chemo nor am I mCRPC = castrate resistant PC. Thus I do not qualify for any clinical studies, which is the only way I can get the Lu-177 here in the USA. Thus, I am coerced into considering Germany or Australia.
Yes Mayo has not been suitable for me neither. I have dealt with them along my path of PC, and been dissatisfied also. "Research exciting"--what a concept. I am sure this is a reality with these clinical issues. Ugh!
I have several Oncologists I talk with here. Whom do U recommend? I live in Mpls.
I am aware of Palliative Care. I am not pursuing that course of action yet since my Cancer is not at that level, yet! I certainly plan to integrate PA into my life when it is warranted.
TX so much Mn Boat for replying to me as one sort of similar to your past husband's situation. Since U live in Mn., I wanted to connect with you Very kind and supportive to respond to me.
Warm regards and condolences; doc rok Minnesotan with U sister.
Hello,
We've found in Vienna, Austria, an oncologist/radiologist who makes the 177Lu-PSMA treatment for my husband who has a biochemical recurrence, after a prostatectomy in December 2018, not having yet received chemo nor ADT. He'll get his first injection on 27th of February, after a positive Ga-PSMA Petscan. He has six lymphnodes with agressive cancer cells and is Gleasonscore 9 (4+5). The Doctor thinks that two, or for a maximum three, injections should be enough to kill all cancercells. We have to pay ourselves the very expensive treatment, because my husband has not yet a castrate resistent PC...
Maybe you could try the same therapy and it could help you?
Best regards.
Good morning Claud68: TX for the info. Yes your husband seems to be in a similar place as to my cancer status. Yes, I know how expensive these treatments are since I am looking into Theranostics from Australia. Would U please send me the contact info. to the doc in Austria? I am searching for options to receive the Lu-177 treatment. As U know, one must leave the USA to receive it if one is not mCRPC. Very thoughtful of you to write C68.
If possible could you please send the same info to me regarding Austria? We were plan to go to Homburg. My husband is a Mayo patient as well. He is not hormone resistant therefore does not qualify for trials so we will go abroad. He just had 2 bone Mets radiated. He went off lupron for 6 weeks and grew one huge lesion on T6. His radiologist thinks this will happen again. I’m am preparing to act quickly as an insurance policy.
Hi paige20180,
Now my husband had got thee treatments in Vienna. The last was on 1st of August. His PSA has dropped to 0.67 12 days after the third injection and should continue to drop as it does since March 2019. He had no side effects at all, even not dry mouth. Only a little nausea the night after the treatment. But my husband had no bone mets, only 6 mets in lymphnods after the prostatectomy on November 30th 2018.
The professor Markus Hartenbach in Vienna made the therapy with Lu-PSMA in his office. You can go home with your husband after the infusion which lasts about one hour. After a Ga168 pet scan he will see if it is possible to do the therapy. Each treatment costs 14.000 €. He speaks English very well.
His email: office@minute-medical.com and the website:
You are welcome if I can help you with other information as we are all in the same terrible situation to fight this terrible cancer.
How should you care for this man? With loving care !
I've nobody to care for me and live alone. I'm 72, and just had my 4th Lu177, and was able to get a train back home to Canberra which is 300km sth west of Sydney where I got my Lu177 from Theranostics Australia. I had to walk around and do stuff, and in weeks that have followed each Lu177 shot I had a dryish mouth slightly for 2 weeks then that went away, but the side effects for me were far less than having Docetaxel and so Lu177 was very tolerable.
So far, Psa was 25 before no 1 Lu177, its now about 4. Psa reduction has been slow because Pca is mainly in my bones. I might need more of it. My type of Pca did not make much Psa at beginning and maybe that's true now. Psa was under 6 at biopsy in late 2009, but when docs tried to do open RP in 2010, they found PG was inoperable. My tumour was more like a tumour that would give Psa of 50+ So like many men I was diagnosed 4 years too late to be able to get a fix from an RP.
Its all water under the bridge now, we can't plan all things, and I wish your returning man the best for his and your future.
Patrick Turner.
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