Interested in hearing people's experiences with PRRT
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.
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.
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.
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?
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.
@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?
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.
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.
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.
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.
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?