1. < Neuroendocrine Tumors (NETs)

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 18, 2021
In reply to @gapsc "I guess this is the end of the run on PRRT. I have lung nets with..." + (show)
@gapsc

I guess this is the end of the run on PRRT. I have lung nets with metastases. I am scheduled for Prrt. Also on list to get covid vaccine a week before. Any one have experience with getting the vaccine and interference with PRRT? Do I get it or wait for full immunity.

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Hello @gapsc,

I am also a patient with NETs. I had my first COVID vaccination last week, however, I do not have any metastasis. As @colleenyoung, suggested, you should definitely talk with your oncologist regarding this vaccine, especially the coordination of the vaccinations with your PRRT treatments.

I will be having surgery on 2/4 (not NETs related) and the hospital pre-surgery screener suggested that I wait an extra week for the 2nd vaccination Timing is always important with these types of treatments/procedures.

If you are comfortable sharing more about your history with NETs: how long ago were you diagnosed with NETs; what treatment have you had so far?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 1, 2021
In reply to @gapsc "I guess this is the end of the run on PRRT. I have lung nets with..." + (show)
@gapsc

I guess this is the end of the run on PRRT. I have lung nets with metastases. I am scheduled for Prrt. Also on list to get covid vaccine a week before. Any one have experience with getting the vaccine and interference with PRRT? Do I get it or wait for full immunity.

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Hello @gapsc
I hope that by now you have had your COVID vaccine. Did it go well for you without too many side effects?
When do you anticipate starting PRRT?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 10, 2021
In reply to @klpetts "Yes, Nov 30 I had lab work, CT and office visits. Lab work showed that my..." + (show)
@klpetts

Yes, Nov 30 I had lab work, CT and office visits. Lab work showed that my tumor marker count is now down to 158; one year ago it was over 1100. Platelet count is at 53. CT results showed a slight decrease in in the size of the pancreatic tumors. Because the cancer had also spread to bone in March a PET CT was ordered, that was done on Dec 10. Those results showed a slight decrease in activity in the abdominal lymph nodes and bone. Will have repeat labs next week to check the platelet count, the octreotide injects will continue every four weeks and a repeat PET CT in March with labs and office visit. Feeling good for the most part; just tire easily.

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Hello @klpetts,

I hope you are feeling better. As I recall, when you last posted you indicated that you would be having a follow-up CT in March. Has that been scheduled yet? I look forward to hearing from you. Will you post an update when it is convenient for you?

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1 reply
KL | @klpetts | Mar 25, 2021
In reply to @hopeful33250 "Hello @klpetts, I hope you are feeling better. As I recall, when you last posted you..." + (show)
@hopeful33250

Hello @klpetts,

I hope you are feeling better. As I recall, when you last posted you indicated that you would be having a follow-up CT in March. Has that been scheduled yet? I look forward to hearing from you. Will you post an update when it is convenient for you?

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Thanks for checking in on me. On March 17 I had lad work and a Nuc Med PET CT, results were given to me on Monday and were not in my favor. Therefore the PRRT treatment is no longer working for me. Last week (Mar 24) I had a Nuc Med PET CT and lab work done. Tumor count has gone back up (was 158 now 951) and the CT showed progression of the cancer, is now in many more places. I will be starting an oral chemotherapy treatment next week in addition to the injection that I get every four weeks. The two oral chemotherapy treatments that I will be starting; Xeloda and Temodar. Karin

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 25, 2021
In reply to @klpetts "Thanks for checking in on me. On March 17 I had lad work and a Nuc..." + (show)
@klpetts

Thanks for checking in on me. On March 17 I had lad work and a Nuc Med PET CT, results were given to me on Monday and were not in my favor. Therefore the PRRT treatment is no longer working for me. Last week (Mar 24) I had a Nuc Med PET CT and lab work done. Tumor count has gone back up (was 158 now 951) and the CT showed progression of the cancer, is now in many more places. I will be starting an oral chemotherapy treatment next week in addition to the injection that I get every four weeks. The two oral chemotherapy treatments that I will be starting; Xeloda and Temodar. Karin

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@klpetts Hello Karin

I'm disappointed to hear that the results of your tests were not more favorable. After going through the rigors of PRRT, I'm sure must feel discouraged as well.

What has your doctor said regarding the Xeloda and Temodar? Are these meds often used to treat advanced cancer? When will you start this treatment?

I hope that this treatment offers potential for you. Will you post an update and let me know how you are doing?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 27, 2021
In reply to @klpetts "Thanks for checking in on me. On March 17 I had lad work and a Nuc..." + (show)
@klpetts

Thanks for checking in on me. On March 17 I had lad work and a Nuc Med PET CT, results were given to me on Monday and were not in my favor. Therefore the PRRT treatment is no longer working for me. Last week (Mar 24) I had a Nuc Med PET CT and lab work done. Tumor count has gone back up (was 158 now 951) and the CT showed progression of the cancer, is now in many more places. I will be starting an oral chemotherapy treatment next week in addition to the injection that I get every four weeks. The two oral chemotherapy treatments that I will be starting; Xeloda and Temodar. Karin

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@klpetts Hello Karin,

Last month you indicated that you would be starting some oral chemo treatments. Have you started those meds already?

How are you feeling? Are you still working?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 27, 2021
In reply to @gapsc "I guess this is the end of the run on PRRT. I have lung nets with..." + (show)
@gapsc

I guess this is the end of the run on PRRT. I have lung nets with metastases. I am scheduled for Prrt. Also on list to get covid vaccine a week before. Any one have experience with getting the vaccine and interference with PRRT? Do I get it or wait for full immunity.

Jump to this post

Hello @gapsc,

As it has been several months since you last posted, I was thinking about you and wondering how you are doing.

Will you post an update at your convenience?

REPLY
KL | @klpetts | May 10, 2021
In reply to @hopeful33250 "@klpetts Hello Karin, Last month you indicated that you would be starting some oral chemo treatments...." + (show)
@hopeful33250

@klpetts Hello Karin,

Last month you indicated that you would be starting some oral chemo treatments. Have you started those meds already?

How are you feeling? Are you still working?

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Yes I did start the oral chemo, currently on my second cycle; 14 days on and 14 days off. Leaving my tired, still working 72 hour per pat period.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 11, 2021
In reply to @klpetts "Yes I did start the oral chemo, currently on my second cycle; 14 days on and..." + (show)
@klpetts

Yes I did start the oral chemo, currently on my second cycle; 14 days on and 14 days off. Leaving my tired, still working 72 hour per pat period.

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@klpetts, Hi Karin,
Thanks for letting me know. I am sorry to hear of the fatigue, I'm sure that makes working much more difficult.

Do you have a support system in place if you need additional help with shopping, meal prep, housekeeping, etc.?

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marifersitacastro | @marifersitacastro | Jun 28, 2021
In reply to @klpetts "Letting any of you that are considering the PRRT treatment know that my first treatment last..." + (show)
@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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@klpetts Hola, mi padre recibió hace un mes su primera infusión con lutathera. Mi padre tiene NET primario en apéndice con metástasis a hígado y después de la infusión ha presentado muchas crisis carcinoides. Nuestros médicos no saben mucho del tema ya que aquí en México es muy raro. ¿Cómo le ha ido a usted con esta terapia? Usted presentó en algún momento el síndrome carcinoide luego de la terapía? y si es así ¿qué tratamiento le daban para los síntomas? Es bueno saber que a usted le ha ido bien. Saludos

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