My dad had his first Lu177 treatment 4 days ago at Heidelberg in Germany. Two nights ago he got really bad pain in his back, at a spot where he knows he got lots of cancer. On a scale 1-10 he says the pain is a 9, snd he usually don't complain so now it must hurt a lot. He was also shaking and feelt sweaty as it hurt so much.
He also feel very tired and don't feel like eating anything.
Have you heard of or experienced any similar side effects after a Lu177 therapy? And if so, when does it go away?
Do any of you also know when it's safe for him to be around kids again, due to the radiation? He had 2,6 measured the day after treatment.
Thanks!
/Sandra
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Sandysol
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Lu-177 is short range (only penetrating about 125 cells around the target), and it's half-life is 6.7 days, so it is practically all gone within a month. There shouldn't be any restrictions about being close to people.
Xofigo is another radiopharmaceutical. It is Radium 223 (an alpha particle emitter), which replaces calcium in bone mets. You can read about the difference here:
The ligands I've seen most are PSMA-617,PSMA-I&T, and PSMA-1007. Scott Tagawa at Weill Cornell is also using PSMA-J591. PSMA-1007 is promising because it is excreted less by the kidneys - which could be dose limiting.
I tried to get in contact with them yesterday but couldn't reach them before the office closed.
My dad didn't tell them anything about the back pain, neither did he tell me before he was back in Sweden again. So sometimes its really difficult to help him out as he stays quiet if I don't ask the right things. But I've sent the office at Heidelberg an email so hopefully they will get back to me by Monday.
He's really dry in his mouth. He didn't getting anything for that. I know that in Finland at Docrates Clinic they let thwm have 4 packs of ice at different places for a few hours so the salivary glanss don't get hit so badly. But nothing at Heidelberg unfortunately.
I think you need to have an ear, nose throat doc look at him.
They will be able to quickly diagnose and treat any salivary issues far better than some oncologists that appear to be disinterested in such plebian matters.
Non functional salivary glands are a major health issue. Maybe as life endangering as the cancer. Or so I have been told.
What did they do to protect his kidneys? You may want to insist on some kidney function testing.
They report that the dry mouth (and loss of tears) lasts for 3-4 weeks. They also have to watch for hematological toxicity from destruction of bone marrow. They usually split the doses to avoid some of the toxicity.
I have not heard why there is pain, but if there is a big tumour in a bone, a lot of Lu177 is attracted to it, and its blood vessels so there is a lot going on at that spot. The radiation is beta type which travels only 1mm, or 0.04inches, and and if the tumour is large, it may the radiation might not reach into all parts of the tumour. I am not an expert, but that seems like common sense to me, so more than 1 infusion is needed to get it all, and while the work goes on of radiation on tumour, nerves could be affected; its a small local invasion of a body. So pain killers might be needed, but I figure it should not last forever.
I have had a lot of beam radiation as primary treatment for PG, and the beams are Xrays which go right through body, and they beam them in different directions and the beams intersect at the tumour, so that gets a high dose. During the first lot of RT which lasted 35 days, after 14 days I found much pain urinating because the tissues and nerves are attacked and irritated, so they hurt. But I coped with the pain, it lasted only 3 weeks total and never returned. I had a second lot of RT to PG and that didn't hurt at all.
It there is pain at a tumour with Lu177, maybe that's a good sign its got to a target and its doing its best for your dear dad.
It is early days, and sometimes discomfort is a large part of treatment. I had both knees replaced 18 months ago, and had frightful pain, I was allergic to endone, strange effects, yet in a week I was pushing a walker in the corridor of hospital along with many others.
Oh yeah, pain long afterwards, poor sleep, but in 10 weeks I was back riding my bicycle again, and the doctors were amazed at my good recovery.
Nobody can deal with cancer and treatment pain without the added worry and anxiety about the future, I do, we are all human, so love ya dad, and he'll get through it all, I am sure.
Yes it is that trial. It consists of two treatments, but Dr. Tagawa said the dosage is much higher than the (3 times) German method. I've seen no side effects on my salivary glands and no results yet from the trial. I'll go for a follow up this Thursday. It is supposed to work on bone mets.
I'm about two weeks out from the 2nd and last infusion. There was no PSA response from the first treatment and I'm waiting for results any day from labs after the second. I'm still quite fatigued after the second...not so much from the first. I have passed two kidney stones in the last month so there's no shortage of pain.
My Dad has metastatic castration resistant prostate cancer. Please share your experience here (place of treatment, contact details, cost, doctor name, side effects experienced, duration of treatment, follow up )
I don’t know anything about LU-177 but someone mentioned that the kidneys are at risk with it. When my dad was first diagnosed his kidneys were going into failure. He experienced tremendous back pain to the left and right side of his spine, his right side being higher I believe. Is the pain directly on the bone or could it be the kidneys?
My father might have the same. It might have to do with bone Mets and bone marrow blood production. What was PSA to begin with?
From my experience there was no pain. The nausea and fatigue lasts about 3 weeks for me. My instructions were to not be around small children or pregnant women for 6 days. I’m using Phenergan for the nausea. Good luck hope he gets to feeling better.
Just got back from the third treatment. I’m more nauseous this time than last treatment. I’m sure it will pass. Overall I am feeling 100 percent better. So happy to hear that your dad is feeling better after his first treatment. Keep that positive attitude going it makes a huge difference in the healing process.
Thank you! Prayers that this will be the future for many men that are stage 4. Please keep us updated, my dad is better but many ups and downs over the past few weeks with labs & electrolytes. Did you experience bone pains as well with 1st/2nd infusions?
My Dad has metastatic castration resistant prostate cancer. Please share your experience here (place of treatment, contact details, cost, doctor name, side effects experienced, duration of treatment, follow up )
My dad had the treatment on the 7th of Aug with Lu177 PSMA at Heidelberg.
Today is 3 weeks post treatment and since the treatment he's been having alot of gas and feeling bloated. He also got diarrhea and sometimes it comes blood in his feces.
Is this related to the bieffects of the treatment you think?
Has anyone of you who've had the same treatment got these side effects?
How is your dad doing? My father has WBC, Hemoglobin and platelets declining. Ha as well experience some nausea, and pain and fatigue . He takes ibuprofen for the bone pain. The areas he used to complain about pain he stopped having aches there about 3weeks after treatment. He now has generalized pain mostly pelvic knees and ankles. Keep updated on how he doing. Praying for all of our fathers, dads and men going through this.
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