Update: Lutethera treatment is over

Posted by sandy23 @sandy23, Jan 10, 2024

Hi all, just wanted to check in with an update for everyone. Sorry it has taken some time, treatments, vacation, holidays and sickness have all been happening in our end.
So, I wanted to let everyone know how things went to hopefully help in your jounry, one that we all are on and in different stages. Hubs started his Lutathera treatmenr in Aug with treatment every 8 weeks, ending on Dec 6th for his last treatment. If y'all aren't familiar with this it us an IV radiation treatment that is given every 8 weeks, is VERY expensive and must be approved by your insurance as well as you have to be accepted into the treatment program....ie; not all stages or labels if the disease warrant this treatment.
On the day of treatment hubs has NOT had an injection of Octreotide for 4 weeks....Very important . He goes in, they set him up with 2 IVS one to give him the drugs he needs for protection of his kidneys, nausea meds, and I believe potassium....(sorry I should of referred to the Lutethera info for more accurate drugs given). Anyway, he gets the initial meds first to get him ready for the Lutethera (radiation). This is all done in the Nuclear Medicine depth of the hospital. After he's been monitored they bring in the radiation. The Nuclear med Dr comes in, has a chat with the hubs and myself. Asks how the last treatment went, any questions, concerns and so on. All that done. Next the radiation is started in his other IV by the nuclear medicine Dr. They check the level of radiation at different times throughout the process and after about 45 min or so the radiation is done. Dr is still there monitoring the entire time asking questions, chatting and finally checking his radiation levels. Then more meds are given to help protect him. Another half hour goes by. Many trips to the bathroom throughout the day (yes, a day long trip....7:30 to usually 4ish. Being did and lots if liquid, preferably water). Then after everything is given the nurse gives him the Octreotide shot. Pose keep in mind hubs is ALWAYS being monitored, they want him up to the bathroom every hour and the nurse is keeping track if his every move. Lol but luckily we were fortunate to get a wonderful nurse, the same one each time and the same Nuclear Med Dr. It was comforting to have familiar faces.
As far as side affects go here is what we noticed. His hair was sorta ready but not in the normal way, just different feeling. Yes, we think he lost a little bit of hair but only bc he could see it in the comb. I noticed slight thinning but nothing major. His hair did seem to get more gray but that that could be a coincidence and not an issue. We bought a Geiger counter and he registered high for about 2.5 to 3 weeks. At which time we took precautions to where we were still sleeping in separate beds and using separate bathrooms as well. Recommended is 3 days of both only. We just didn't want to take any chances. I'm not a spring chicken and have my own health issues.
One thing I noticed that has alarmed me is that he is having short term memory loss. To save on reading more I'll just say I did test this out in several occasions and the nuclear medicine Dr and his oncologist all noticed it as well. In taking with the Nuclear Med Dr he stated this is NOT a side affect and to tall to the oncologist. Next visit I brought it up to the oncologist and he recommended a neurologist visit is warranted. However, between the last 2 oncologist visits we did not get a call to schedule a visit. The 2nd visit to the oncologist I couldn't go due to the crud going around and me not wanting to expose anyone in the office, mask or otherwise. I mentioned to my hubs to find out about it and he things he doesn't need it. He feels it's due to stress or a side affect of the radiation or just getting older. All of these things we both discussed with both Dr's. So for now, since he's due to get a CT scan on Friday and I'll be going to the next visit we'll let it go. I can't force him or talk him into anything when his mind is set on something.
That's about it. Treatments are over, CT is set up... earlier than expected but Oncologist said it'll be a good baseline. So we'll see. Short term memory is still a thing, still frustrating on my part. I have to stop and think... is it the cancer or selective hearing? Lol Either way I hope it's not serious. All I can do is pray and relay what's going on and the Dr's knowledge. Hope this helps.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@zacharycat

After first diagnosis Dec 2023, had lanreotide injections and a hepatic artery embolization. Neither seemed to help much. In Feb 2024 started folfox chemotherapy, which i tolerated but with side effects (nausea, numbness in hands and feet which i still have).
The PRRT with Lutathera ran from May- Nov 2024. Much easier to tolerate than chemo, probably because it targets the
tumor sites specifically.
In April 2025 had some problems and was taken to hospital in ambulance as in Dec 2023. Surgeon removed tail of pancreas, spleen and gall bladder, and did liver ablation. Had PET scan today, will meet doctors several times this week. Maybe i shouldn't have read the test report online as it has me rather depressed.

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I don't know how you don't read it and feel like you got punched in the gut afterwards. But, try to get some rest and get ready for your doctors' appointments. Have some questions prepared, keep an open mind, and listen. New treatment opportunities might be available. Things are changing more rapidly than even. If you learn something exciting, or boring for that matter, please share here. We are all learning things together.

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@tomrennie

I don't know how you don't read it and feel like you got punched in the gut afterwards. But, try to get some rest and get ready for your doctors' appointments. Have some questions prepared, keep an open mind, and listen. New treatment opportunities might be available. Things are changing more rapidly than even. If you learn something exciting, or boring for that matter, please share here. We are all learning things together.

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Thanks for the kind words. I meet doctors on Thurs and we will see.
One question i have is about clinical trials. Whether i apply for them or need a doctors reference?

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@zacharycat

Thanks for the kind words. I meet doctors on Thurs and we will see.
One question i have is about clinical trials. Whether i apply for them or need a doctors reference?

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Hello @zacharycat and welcome to Mayo Connect. I see that you have been on this NETs journey for a while now and various surgeries and treatments have been tried.

You said that you would be meeting with your doctors on Thursday. @tomrennie made a good suggestion about bringing a list of questions and concerns with you to the appointment and keeping an open mind and listening. As these appointments can be stressful, I'm wondering if there is a family member or friend who could accompany you to that appointment? It really can help to have an extra set of ears to hear what is being said and someone to take notes on the doctors' comments and suggestions. If there are specific questions you have regarding a scan or report that you have read, feel free to bring that with you and note your questions.

How are you feeling now? Do you have an appetite, are you able to eat comfortably? Any blood sugar problems related to the surgeries on the pancreas?

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Hi
I did 4 PRRT treatments with octreotide
Did a PET scan and a MRI
It worked no new growth some shrinkage
I just did a brain scan terrible short term memory loss
All good
I think it is from the Octreotide since I had it but not as bad before the PRRT

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@hopeful33250

Hello @zacharycat and welcome to Mayo Connect. I see that you have been on this NETs journey for a while now and various surgeries and treatments have been tried.

You said that you would be meeting with your doctors on Thursday. @tomrennie made a good suggestion about bringing a list of questions and concerns with you to the appointment and keeping an open mind and listening. As these appointments can be stressful, I'm wondering if there is a family member or friend who could accompany you to that appointment? It really can help to have an extra set of ears to hear what is being said and someone to take notes on the doctors' comments and suggestions. If there are specific questions you have regarding a scan or report that you have read, feel free to bring that with you and note your questions.

How are you feeling now? Do you have an appetite, are you able to eat comfortably? Any blood sugar problems related to the surgeries on the pancreas?

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Having someone to accompany on appointments is a VG idea. I have such a friend, a retired nurse, who has been extremely helpful both on appointments and hospital stays. She has health problems of her own now, as well as a sick family member to care for so I don't want her to do too much.

Feeling now is not too bad. Good appetite, can eat what I want but avoid alcohol. Took a short bike ride, pretty much the highlight of the day. tried a longer ride Sun but that wasn't so good. Fatigue and maybe a bit of low blood sugar. First appointment tomorrow is endocrinology so I can hopefully get workable monitoring of that.

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