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 | Jul 25, 2020
In reply to @klpetts "As promised here is my update from Thursday (Jul 23). Lab work, CT on office visit..." + (show)
@klpetts

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.

Jump to this post

@klpetts I so appreciate the update and I'm so pleased for you!!! It is so good to know that this treatment is working and you are experiencing a reduction in the chromogranin numbers as well as the lesions decreasing in size. You are offering some hope to all of us regarding PRRT!
A virtual hug goes your way for this encouraging report.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 4, 2020
In reply to @hopeful33250 "@klpetts I so appreciate the update and I'm so pleased for you!!! It is so good..." + (show)
@hopeful33250

@klpetts I so appreciate the update and I'm so pleased for you!!! It is so good to know that this treatment is working and you are experiencing a reduction in the chromogranin numbers as well as the lesions decreasing in size. You are offering some hope to all of us regarding PRRT!
A virtual hug goes your way for this encouraging report.

Jump to this post

Hello @klpetts
Will your next PRRT treatment be later this month? I hope you are continuing to feel better as time goes on.

REPLY
1 reply
KL | @klpetts | Aug 4, 2020
In reply to @hopeful33250 "Hello @klpetts Will your next PRRT treatment be later this month? I hope you are continuing..." + (show)
@hopeful33250

Hello @klpetts
Will your next PRRT treatment be later this month? I hope you are continuing to feel better as time goes on.

Jump to this post

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

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 5, 2020
In reply to @klpetts "Yes, I will be going to Rochester on August 19, this will be my third treatment...." + (show)
@klpetts

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

Jump to this post

Glad to hear that, @klpetts!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 23, 2020
In reply to @klpetts "Yes, I will be going to Rochester on August 19, this will be my third treatment...." + (show)
@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
1 reply
KL | @klpetts | Aug 27, 2020
In reply to @hopeful33250 "Hi @klpetts , Probably by now you've had your third PPRT. How are you feeling?" + (show)
@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
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 28, 2020
In reply to @klpetts "Yes, I had my third treatment last week on the 19th. All went well, was a..." + (show)
@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
jimcarol31342 | @jimcarol31342 | Aug 28, 2020

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
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 28, 2020
In reply to @jimcarol31342 "I had two treatments and then my white blood count and platment counts dropped so I..." + (show)
@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
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 24, 2020
In reply to @jimcarol31342 "I had two treatments and then my white blood count and platment counts dropped so I..." + (show)
@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
View MoreView Less
Please sign in or register to post a reply.