PRRT Treatment

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) group.

@klpetts

Yes, I will be going to Rochester on August 19, this will be my third treatment. Still feeling good.

Jump to this post

Hi @klpetts ,
Probably by now you've had your third PPRT. How are you feeling?

REPLY
@hopeful33250

Hi @klpetts ,
Probably by now you've had your third PPRT. How are you feeling?

Jump to this post

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?

REPLY
@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

So glad to hear that you had your 3rd PRRT treatment, @klpetts. I'm sure you are fatigued. Please take it easy. I have not heard of any Member who is currently involved in PRRT either in Mayo or elsewhere. If there is someone, I hope they will post.

When will you have the next follow up blood work and scan?

REPLY

I had two treatments and then my white blood count and platment counts dropped so I haven’t been able to continue them but my tumors shrunk in size. The treatments were successful

REPLY
@jimcarol31342

I had two treatments and then my white blood count and platment counts dropped so I haven’t been able to continue them but my tumors shrunk in size. The treatments were successful

Jump to this post

Thanks for posting about your successful treatments, @jimcarol31342. Are you planning on continuing with the treatments when your blood work comes back to normal?

By the way, how long ago were you diagnosed with NETs? If you don't mind sharing more where is the location?

REPLY
@jimcarol31342

I had two treatments and then my white blood count and platment counts dropped so I haven’t been able to continue them but my tumors shrunk in size. The treatments were successful

Jump to this post

@jimcarol31342 Just wanted to check in with you to see how you are doing. Have your blood counts returned to normal now? I hope you are feeling better.
Do you plan to complete the PRRT series?

REPLY
@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
@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
@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
@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
@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
@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
Please sign in or register to post a reply.
  Request Appointment