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...

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Profile picture for sophiarose @sophiarose

@kurtjazzy01
Other than 3 days later I washed my bedding and all my clothes I wore
I really didn’t worry to much about anything else
Good luck

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@sophiarthappse thanks kurt,

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Profile picture for kurtjazzy01 @kurtjazzy01

Was wondering if anyone new if you have have to do something with bedding pillows etc thanks kurt

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@kurtjazzy01
Other than 3 days later I washed my bedding and all my clothes I wore
I really didn’t worry to much about anything else
Good luck

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Was wondering if anyone new if you have have to do something with bedding pillows etc thanks kurt

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I started the prrt treatment in 1-04-26 had second treatment 3-07-26 did not any problems.

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What can you do to get your platelets up mine dropped below 100 and i need them up before my next trip to the hospital. Thanks kurt

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After prrt what do you do with your pillows and blankets due to the radiation??? Thanks kurt

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Profile picture for lu7 @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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Profile picture for kwan @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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@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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Profile picture for kwan @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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