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.

phyllisden | @phyllisden | Oct 12, 2023
In reply to @kwan "@phyllisden, sorry to have misread your message. Do you mean fish oil and vitamin E might..." + (show)
@kwan

@phyllisden, sorry to have misread your message. Do you mean fish oil and vitamin E might decrease iron absorption , and lower the count of platelets.

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They can act as blood thinners.

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phyllisden | @phyllisden | Oct 14, 2023
In reply to @kwan "@phyllisden, sorry to have misread your message. Do you mean fish oil and vitamin E might..." + (show)
@kwan

@phyllisden, sorry to have misread your message. Do you mean fish oil and vitamin E might decrease iron absorption , and lower the count of platelets.

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@kwan, fish oil and vitamin E can thin blood, thus lowering the platelet count.

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kwan | @kwan | Oct 15, 2023

@phyllisden
Thank you for the info. Much appreciated.

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kwan | @kwan | Oct 15, 2023
In reply to @lu7 "Hello! I just finished my 6th round of Lutetium LU-177 dotatate as part of the Compose..." + (show)
@lu7

Hello! I just finished my 6th round of Lutetium LU-177 dotatate as part of the Compose trial. My primary was a PNET. I had a distal pancreatectomy and splenectomy in early 2021.
We found Mets to my liver in fall of 2022. Thirty to 40. I have scans next week so I will know more then, but Dr. Halfdanerson is very pleased, I think. So far there has been slight shrinkage in most of the marker tumors. It's only a couple millimeters but I'll take it. They haven't seen new tumors. The hope is that the therapeutic benefits will continue for some time. I will try to post an update next week after scans. Happy to answer any questions. My best to you!
Linda

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@lu7
I see you have done the 6 th round of LU -177 dotatate. Has there been problem with your platelets counts running low? Will that stop further treatment or is there remedy that can be done?
My son has finished 2 rounds of PRRT, but his platelet count has gone from 135... to 75..

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1 reply
lu7 | @lu7 | Oct 16, 2023
In reply to @kwan "@lu7 I see you have done the 6 th round of LU -177 dotatate. Has there..." + (show)
@kwan

@lu7
I see you have done the 6 th round of LU -177 dotatate. Has there been problem with your platelets counts running low? Will that stop further treatment or is there remedy that can be done?
My son has finished 2 rounds of PRRT, but his platelet count has gone from 135... to 75..

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I'm so sorry your son saw that platelet drop! I started with really high platelets, so the did drop a little, but still well within normal range. I had no major side effects. A little fatigue and GI issues, but really could be because of the cancer more than the treatment. Will they restart if his numbers come up? Hoping for the best for him. There are other new treatments on the horizon according to my oncologist! Maybe there's a great option out there!

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kwan | @kwan | Oct 16, 2023

@lu7 thanks for your prompt reply. Hope your treatment will continue to work for you. The petscan is scheduled in early November and we hope my son can benefit from the first 2 treatments of PRRT. All the best to all of us.

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1 reply
lu7 | @lu7 | Oct 16, 2023
In reply to @kwan "@lu7 thanks for your prompt reply. Hope your treatment will continue to work for you. The..." + (show)
@kwan

@lu7 thanks for your prompt reply. Hope your treatment will continue to work for you. The petscan is scheduled in early November and we hope my son can benefit from the first 2 treatments of PRRT. All the best to all of us.

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My very best as well. My doctor always reminds me he has lots of tools in his toolbox. It helps me to know that. Does your son have lots of symptoms? I'm lucky. Mostly fatigue. I hope he isn't suffering all the time.

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1 reply
kwan | @kwan | Oct 16, 2023
In reply to @lu7 "My very best as well. My doctor always reminds me he has lots of tools in..." + (show)
@lu7

My very best as well. My doctor always reminds me he has lots of tools in his toolbox. It helps me to know that. Does your son have lots of symptoms? I'm lucky. Mostly fatigue. I hope he isn't suffering all the time.

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@lu7 he only has occasional back pain lately but it goes away. Thanks

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