Dealing with Lutathera treatments alone: Tips?

Hello @shirleyslominski, and welcome to the NETs support group on Mayo Clinic Connect. I am glad you found this forum so you can meet others who have NETs and those who have had the Lutathera treatment.

I feel concerned that you are not sure that your doctor has the answers you need when you ask questions. My first thought would be to consider having at least one consultation with a NETs specialist. Not all general oncologists are specifically trained or experienced in the treatment of NETs. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Carcinoid Cancer Foundation with NET specialists in the U.S. and worldwide: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. There is great value in seeking a second opinion regarding a rare cancer such as NETs.

Regarding your reactions to the Lutathera treatments, does your doctor offer any suggestions? A number of Connect members have had these treatments, with good results. I would like to invite them to discuss their experiences with you: @vinnie@694, @dbamos1945, and @sophiarose.

Is it possible for you to get a second opinion?

@hopeful33250

It is my location that is the problem. I drive 3 hours one way for the treatment alone. Duke University would be ideal but that is almost more than 4 hours away. My experience oncologists in my area is that refer me to hospitals for information. So everything I'm getting is online concerning the nets. But I can't find any information about the side effects of the procedure. And no there isn't anyone at all who can help me or who have helped me. In fact my oncologist just tells me to talk to another doctor at MUSC where I don't have a doctor just the treatment. I have a treatment tomorrow I'll go ask them but at this point I'm considering perhaps maybe taking the third treatment and not the fourth if I I am unable to get further information I am afraid of some of the side effects on feeling.

@shirleyslominski
I can understand your hesitation to drive four hours; however, have you considered meeting with this specialist for a one-time consultation? Often, if a NET specialist can meet with you and review your records, he/she might be able to answer your questions in a way your current doctor cannot. Also, if this specialist feels that your treatment might need to be changed, then he can work with your current oncologist.

Does that sound like something you could consider?

Tomorrow I am going for my 3rd lutathera treatment. If we could do something over the phone or video yes. And in eight weeks I'll be going for my fourth treatment. My biggest concern is the effects of the radiation on my body and how I'm feeling. I get my information online however I would prefer to speak to a patient who is suffering these eight weeks between treatments. I just want to know what their symptoms are how they're feeling. Because my doctors are not telling me or referring me to anyone who's had this treatment. I know what I have it's stage 4 I'm aware of that. What is the long range effects of the radiation? How do I know that the treatment is actually working. I'm told I can't have another PET scan unless I have four treatments because the insurance might not pay for it. I sound like I'm all over the place but it's basically how I feel 8 weeks after every treatment.

Shirleyslominski, I had my first Lutathera treatment at Mayo Phoenix in 2021. On day 3 after the first session I got out of bed to go to the bathroom and on my way back suddenly the room spun and I went down, striking my head on a chest of drawers, and off I went to the ER. (To see a doc who never heard of carcinoid cancer but immediately started doing some research). Bottom line - from then on my docs at Mayo cut the dosage in half. I am 4’11” and only weighed (then and now) 95 lbs. After effects were still challenging but nothing like that or what you’ve described.
Fast forward to last year and I did another round of the Lutathera at UNM Cancer Center and again, with half dosage. I felt kinda crappy but had plenty anti-nausea meds, Gatorade, got hydration when I needed it, etc. In November we brought Mayo back in for a consult (Dr. Sonbol). My scan in January was “stable”. And this is my eighth year since diagnosis.
So maybe your doc will consider a lower dosage. Mayo does many, many consults but FYI - the oncology department will no longer do video appointments.
I hope you can get the help you need-I believe it’s out there.

I found a doctor who specializes in the treatment and she answered a lot of my questions. Most importantly, some people do experience what I have experienced and some have not. She listened to me she took notes she believed me. And when you say all about your balance that happened to me on my first treatment and I fell into the coffee table. I still have times when I can feel my equilibrium isn't there but I'm aware of it and I walk slow LOL. I had a treatment yesterday we'll see how I feel today so far not too bad yesterday was horrible especially cuz I had to drive 3 hours home but never mind. I hope you feel better and it's really hopeful when our doctors listen to us and look up the information and are willing to admit they don't know a lot about it. So that that's a good start.

@shirleyslominski PRRT was the one treatment I had with no negative effects. Got sick on chemotherapy, high fever for days after hepatic embolization, side effects from all oral meds, most recently cabometyx. Surgery was disabling for some time and I still have some stiffness and pain. On PRRT between treatments I could almost forget I had cancer, and for several months later. Of course the symptoms did return.
The way I felt was the main assurance that the treatment was beneficial and lab readings and scans confirmed this. They didn’t show me before scans, which is just as well as they were bad. On after scans tumors were barely visible. They continued shrinking after treatment although as I said symptoms reappeared (with insulinoma a very small one can make lots of insulin).
The radiation didn’t really concern me as the doctor explained how the Lutathera bonded to the tumor cell receptors sites and targeted them, minimizing effects elsewhere. Used to visualize it destroying the tumor cells DNA so I didn’t mind the treatment. Also the staff at U of Michigan was excellent and very helpful.
It’s expensive and even with coverage I still owe them money. I am paying it down so that maybe if needed I can get more treatment. (I had four sessions, I hear some patients got six or even eight. Maybe that’s too much radiation for the kidneys though.)

@zacharycat I just heard yesterday about using more than four treatments? I was surprised to say the least. Seems like you've gone through a lot. I was living with the tumors for 22 years without any problems and it started in 2024 so I figure I had a long run. Not feeling too bad today not feeling too good. One more treatment and then I can have dotate PET scan see if the treatment works?

@shirleyslominski 22 years is quite a while. That they didn't cause problems until 2024 is encouraging.
Mine were only found less than two and half years ago. No symptoms until two months earlier. At age 69 then, so I guess I can't complain either. They had already spread to the liver, maybe getting some tests earlier would have made a difference but I understand this is typical.