Interested in hearing people's experiences with PRRT

Hello @marifersitacastro

When you posted last month you were thinking of coming to the U.S. to see if your husband could get some treatment for his carcinoid crisis. Were you able to do that?

Has his condition improved any?

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?

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

@marifersitacastro I am glad to hear that he is doing better. I hope that the second treatment is easier for him.

Is he able to be at home? Will you post again after the August 11 treatment?

Hello @klpetts

I was wondering how you were doing with the oral chemotherapy. I hope you are feeling better.
Will you post an update when it is convenient?

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, 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!

@marifersitacastro

I'm so glad to hear that your dad is doing better with the second treatment! That is good news.

I have not needed to have PRRT treatment at this point so I can't answer any of your questions from personal experience. I have heard that there is a product available that has been used by others in treatment for cancer. The name of the product is Enterade and I believe that it can only be obtained by ordering online. Here is the website, https://enterade.com/?gclid=Cj0KCQjwnJaKBhDgARIsAHmvz6e1ug4ZF3mqyfcvYtWk7OEuQfjRtaOJ_wD534W6dluQicHo6LfE9k8aAtXzEALw_wcB.

As I said, I've never used this myself but many in a NETs support group have talked about it favorably.

I look forward to hearing from you again. I hope your dad has favorable results in his October treatment.

Will you post and let me know how he is doing?

Hello @klpetts

Just wanted to check-in and see how you are doing. I hope the oral chemotherapy is helping you.

Could you provide an update and let me know how you are?

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