Update: Lutethera treatment is over

Posted by sandy23 @sandy23, Jan 10 10:49am

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.

@colleenyoung

@kc43, the liver is an amazing organ. I'm glad to hear that it has recovered 70% of its former self. It sounds like your doctor is monitoring your health closely and that stopping chemo, at least for a period of time, is advisable. Are you comfortable with that decision? Have you stopped yet? How are you doing?

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I was surprised to find out from my net specialist that his patients don’t use the Cap/Tem chemo for longer than two years due to bone marrow issues that occur with long-term use. I’m wanting to know what others have tried once the tumors start growing again.

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@kc43

I was surprised to find out from my net specialist that his patients don’t use the Cap/Tem chemo for longer than two years due to bone marrow issues that occur with long-term use. I’m wanting to know what others have tried once the tumors start growing again.

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Hoping not to sound like an idiot but what is Cap/Tem??

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@sandy23

Hoping not to sound like an idiot but what is Cap/Tem??

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Cap/Tem is a chemo based pill that is typically used as a first course of treatment upon diagnosis of NET’s. It was generally tolerated ok, better than what I have heard from other intravenous forms of cancer. It has been very effective in most cases, but your team will make that decision depending on what’s best in your case. Hope that helps?

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@sandy23

Hoping not to sound like an idiot but what is Cap/Tem??

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Good question, Sandy.
CAPTEM is the acronym for the chemotherapy combination with drugs called CAPecitabine and TEMozolomide.

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So glad that you were able to complete the treatments. My spouse had one treatment as you described and got sepsis 3 days later. The Oncologists "think" it was caused by the "melting" of the tumor material. Needless to say they stopped the treatments.
I do want to stress it's what the Oncologists think might have caused the sepsis. This occurred several months ago and they are still not positive that is what caused the sepsis.

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