Interested in hearing people's experiences with PRRT

Posted by SMB @sherryboynton, Mar 29, 2019

Sorry if this has been discussed before, but I was interested in hearing peoples experience with PRRT (Peptide Receptor Radionuclide Therapy)? I live in Georgia and have an appointment at Mayo in Jacksonville next month and I was wondering if this was something they would discuss...

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

Profile picture for KL @klpetts

Yes, I had my third treatment last week on the 19th. All went well, was a long day. This one left me very tired. My fourth and final treatment is planned for October 14th. Is anyone else on here going to Rochester for this?

Jump to this post

Hello @klpetts,

I was thinking about you and remembered that your last PRRT treatment was scheduled for next week, the 14th. Is that still scheduled? How are you feeling? I wish you well as close out this treatment. I would love to hear from you when you have time to post an update.

REPLY
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @klpetts,

I was thinking about you and remembered that your last PRRT treatment was scheduled for next week, the 14th. Is that still scheduled? How are you feeling? I wish you well as close out this treatment. I would love to hear from you when you have time to post an update.

Jump to this post

Thank you.
Yes my last 4th treatment was on the 14th. Several of my labs came back on the low end of the spectrum, but not low enough to cancel my treatment. So far only feeling tired; getting lots of rest and drinking lots of water and juice. I will be continuing with the octriotide injections every four weeks, On Dec 10 is lab work, CT, octriotide injection and office visit.

Hope that any one else going thru this treatment is doing well.

REPLY
Profile picture for KL @klpetts

Thank you.
Yes my last 4th treatment was on the 14th. Several of my labs came back on the low end of the spectrum, but not low enough to cancel my treatment. So far only feeling tired; getting lots of rest and drinking lots of water and juice. I will be continuing with the octriotide injections every four weeks, On Dec 10 is lab work, CT, octriotide injection and office visit.

Hope that any one else going thru this treatment is doing well.

Jump to this post

I'm glad that you were able to finish the PRRT, @klpetts. That is good news. I hope that your fatigue lifts over the next week or so.

How long do you have to isolate yourself from others after the treatment is over?

REPLY
Profile picture for Teresa, Volunteer Mentor @hopeful33250

I'm glad that you were able to finish the PRRT, @klpetts. That is good news. I hope that your fatigue lifts over the next week or so.

How long do you have to isolate yourself from others after the treatment is over?

Jump to this post

In isolation for 72 hours. And because of COVID I rarely go out and about doing anything extra. 🙁
Took an extra day off from work; going back on Tuesday.

REPLY
Profile picture for KL @klpetts

In isolation for 72 hours. And because of COVID I rarely go out and about doing anything extra. 🙁
Took an extra day off from work; going back on Tuesday.

Jump to this post

@klpetts I trust that your time of rest will serve you well and that you will have more energy when you return to work on Tuesday. Do you interact with the public at work?

REPLY
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@klpetts I trust that your time of rest will serve you well and that you will have more energy when you return to work on Tuesday. Do you interact with the public at work?

Jump to this post

I happen to also be a Mayo Clinic employee, as a scheduler. We have a rotation to be out in the reception area to assist patients with scheduling that I no longer am a part of; since the start of COVID my supervisor has kept me in our phone room. I rarely go to the patient areas, the employee entrance happens to be very close to the phone room that I work in. Working from home is not an option for me due to my internet service.

REPLY
Profile picture for KL @klpetts

I happen to also be a Mayo Clinic employee, as a scheduler. We have a rotation to be out in the reception area to assist patients with scheduling that I no longer am a part of; since the start of COVID my supervisor has kept me in our phone room. I rarely go to the patient areas, the employee entrance happens to be very close to the phone room that I work in. Working from home is not an option for me due to my internet service.

Jump to this post

How wonderful that Mayo has given you a job where you do not have to interact with the public, @klpetts. I wish you well as you go back to work and hope that your energy level is sufficient for each day.

REPLY
Profile picture for KL @klpetts

I happen to also be a Mayo Clinic employee, as a scheduler. We have a rotation to be out in the reception area to assist patients with scheduling that I no longer am a part of; since the start of COVID my supervisor has kept me in our phone room. I rarely go to the patient areas, the employee entrance happens to be very close to the phone room that I work in. Working from home is not an option for me due to my internet service.

Jump to this post

Hello @klpetts,

I hope that your energy level is returning since your last PRRT treatment. How are you feeling these days?
As I recall, you will be having some follow-up tests on December 10. Please provide an update if you are comfortable doing so.
I look forward to hearing from you again.

REPLY
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @klpetts,

I hope that your energy level is returning since your last PRRT treatment. How are you feeling these days?
As I recall, you will be having some follow-up tests on December 10. Please provide an update if you are comfortable doing so.
I look forward to hearing from you again.

Jump to this post

Thanks for checking in on my. My energy level was returning, then I was given another 'unwanted diagnosis'. I tested positive for covid. So my monthly injection that was due on Nov 12 has been delayed until Nov 30. My lab work and imaging have also been moved from Dec 10 to Nov 30. Getting lots of rest and drinking lots of water.

REPLY
Profile picture for KL @klpetts

Thanks for checking in on my. My energy level was returning, then I was given another 'unwanted diagnosis'. I tested positive for covid. So my monthly injection that was due on Nov 12 has been delayed until Nov 30. My lab work and imaging have also been moved from Dec 10 to Nov 30. Getting lots of rest and drinking lots of water.

Jump to this post

I am sorry to hear of your COVID diagnosis, @klpetts. What sort of symptoms were you having when you were tested for COVID?
I hope you begin to feel better soon. What does your doctor say about your recovery time?

REPLY
Please sign in or register to post a reply.