Interested in hearing people's experiences with PRRT

Hello @markmark007,

When you say that you do understand that these questions are "patient specific" you are correct. I have heard of NETs patients who have had more than one round of PRRT and most likely there are other treatment modalities that I am not aware of. It is important to communicate some of these concerns with your oncologists.

I might also recommend that you connect with Mayo's virtual support group if you have not done so already. This group meets on the first Thursday of every month from 5:30 to 7 p.m. EST, via Zoom. The meeting originates from the Mayo Jacksonville campus and the facilitator of the meeting is a Mayo social worker. There are approximately 25 NETs patients who attend each meeting. While there is often a speaker from Mayo's staff there is usually a minimum of a half hour when the members have an opportunity to share with each other and ask questions.

I realize that I have not answered many of your questions, however, NETs treatment is quite an individual process.

Teresa:
My wife Sharon has recently had a C/T which showed additional lesions in the liver which were "stable" 6-8" months ago. Additionally, there appears to be a lesion on her spleen. Her recent blood work (Chromogranin & serotonin) showed troubling increases. She does not present with typical NET symptoms. She has been on lanreotide injections since 2017.
She is scheduled for a Ga 68 scan on 02/02/2023.
Questions:
1. If PRRT therapy is recommended for her case, is this the "last resort"?
2. If not, what other therapies have been used - we do understand that this is patient specific - just want to know what others have done post - PRRT.
3. Any other input will be sincerely appreciated.
Many thanks and God bless,
Mark

Teresa:
My wife Sharon has recently had a C/T which showed additional lesions in the liver which were "stable" 6-8" months ago. Additionally, there appears to be a lesion on her spleen. Her recent blood work (Chromogranin & serotonin) showed troubling increases. She does not present with typical NET symptoms. She has been on lanreotide injections since 2017.
She is scheduled for a Ga 68 scan on 02/02/2023.
Questions:
1. If PRRT therapy is recommended for her case, is this the "last resort"?
2. If not, what other therapies have been used - we do understand that this is patient specific - just want to know what others have done post - PRRT.
3. Any other input will be sincerely appreciated.
Many thanks and God bless,
Mark

Hello @sherryboynton

First of all, welcome to Mayo Connect. I see that you just began posting today and I'm glad that you are reaching out on this discussion group. On Mayo Connect, we have only had one Member who has mentioned PRRT treatment. She is this process now and I will invite her to discuss it if she would like to. Her name is @tresjur.

Regarding your appointment at Mayo in Jacksonville next month, you should definitely discuss this with them. I have not been treated at Mayo. While I've had three surgeries for NETs at this time there is no evidence of metastasis, so I have not looked into this type of chemotherapy. I'm sure that they will do their best to answer your questions. As I was reading some of your other posts it seems like you have met with a lot of doctors who have indicated that your type of tumor is not a candidate for this type of treatment. Is that correct?

How are you feeling now? Do you have symptoms of carcinoid syndrome? What is your greatest concern right now?

Here is a video about PRRT treatment from the Carcinoid Foundation, https://www.youtube.com/watch

While on the PRRT my tumors responded well to the treatment plan. Unfortunately several months later it stopped working for me and am now on a different treatment plan.

Hola, ésta segunda aplicación estuvo más tranquila, tuvo 1 crisis carcinoide que lo llevó al hospital por 1 día, pero bastante mejor que la primera aplicación. Se está programando la tercera aplicación en octubre. Los médicos dicen que se puede saber si ha habido mejoría hasta finalizar el tratamiento. Ha bajado mucho de peso, me recomiendan algún suplemento o alguna dieta polimérica para ayudarlo? Gracias por estar al pendiente saludos!

Hello @marifersitacastro

I was wondering how your dad is doing since he had his second treatment in August?
Will you post an update when you have time?

Hola, mi padre está mejor, el 11 de agosto recibirá el segundo ciclo con lutathera. Definitivamente las crisis carcinoides aumentaron mucho después de ese tratamiento y después de 2 meses han disminuido bastante. Mi padre bajó bastante de peso pero esperemos que este ciclo le vaya mejor, gracias

Hello @klpetts

I've been thinking about you and I hope that you are doing better. As it has been a few months since you started the oral chemotherapy, I was wondering how are you feeling?

Anything new in your treatment plan?