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.

Letting any of you that are considering the PRRT treatment know that my first treatment last Friday (April 24) went well. I happened to arrive early and they were ready for me! Once in my hospital room for the day I had the series of infusions and the lutathera and was able to leave later that afternoon. I had to practice even more social distancing (3 feet) from everyone for 72 hours. Only reaction that I had was some nausea on Sunday, but that may have been from something that I had eaten or perhaps had done too much around the house, since I was feeling good I thought that perhaps I should get some things done. Next time they will wait.

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@klpetts

Letting any of you that are considering the PRRT treatment know that my first treatment last Friday (April 24) went well. I happened to arrive early and they were ready for me! Once in my hospital room for the day I had the series of infusions and the lutathera and was able to leave later that afternoon. I had to practice even more social distancing (3 feet) from everyone for 72 hours. Only reaction that I had was some nausea on Sunday, but that may have been from something that I had eaten or perhaps had done too much around the house, since I was feeling good I thought that perhaps I should get some things done. Next time they will wait.

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Hello @klpetts

I'm so pleased that you finished your first PRRT treatment and I'm glad to hear that you are feeling OK. How nice of you to report your progress!

When will you be having your next treatment?

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Next treatment is June 24. Each of the four treatments will be approx eight weeks apart. Response to the treatment will be done with tumor marking lab work and eventually imaging.

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@klpetts

Next treatment is June 24. Each of the four treatments will be approx eight weeks apart. Response to the treatment will be done with tumor marking lab work and eventually imaging.

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Hello @klpetts,

I just noticed that your next treatment will be next week. How are you feeling?

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@hopeful33250

Hello @klpetts,

I just noticed that your next treatment will be next week. How are you feeling?

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Have had some minor bouts of nausea other than that I have been feeling ok. I a busy week of appointments next week; Monday is lab work, COVID testing and an office visit with my oncologist in Eau Claire. Wednesday is my treatment day in Rochester, then on Thursday an octreotide injection in Eau Claire. Thanks for checking in. Will let you know how Wednesday goes.

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@klpetts

Have had some minor bouts of nausea other than that I have been feeling ok. I a busy week of appointments next week; Monday is lab work, COVID testing and an office visit with my oncologist in Eau Claire. Wednesday is my treatment day in Rochester, then on Thursday an octreotide injection in Eau Claire. Thanks for checking in. Will let you know how Wednesday goes.

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I'll be thinking (and praying) for you,@klpetts. I appreciate the update.

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@klpetts

Next treatment is June 24. Each of the four treatments will be approx eight weeks apart. Response to the treatment will be done with tumor marking lab work and eventually imaging.

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Hello @klpetts,

I was just thinking about you. How was your June 24 PRRT treatment? How are you feeling now?

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@hopeful33250

Hello @klpetts,

I was just thinking about you. How was your June 24 PRRT treatment? How are you feeling now?

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Thanks for checking in on me. I am feeling good, the past treatment left me very tired feeling. I did lots of resting and reading. On July 23 I have lab work, imaging and a doctors appointment; all to check on how the PRRT treatment is working.

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@klpetts

Thanks for checking in on me. I am feeling good, the past treatment left me very tired feeling. I did lots of resting and reading. On July 23 I have lab work, imaging and a doctors appointment; all to check on how the PRRT treatment is working.

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Thanks for the update, @klpetts. I hope that the lab work, imaging and appointments go well. Will you post an update after that?

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@hopeful33250

Thanks for the update, @klpetts. I hope that the lab work, imaging and appointments go well. Will you post an update after that?

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As promised here is my update from Thursday (Jul 23). Lab work, CT on office visit were all in my favor this time. There are no new lesions nor new lymph nodes affected, there are signs of these areas decreasing in size. My chromogranin numbers were/are; Oct 7 1132, Dec 31 692, Mar 25 1021 and Jul 23 421. This all means that the lutathera treatment in Rochester is working and I will be able to continue with the remaining two treatments. Thank you to those of you following, and best wishes to those whom are also having this treatment plan and those thinking/ planning on going thru it.

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