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.

jayace2430 | @jayace2430 | Mar 17 11:29am

In reply to @kurtjazzy01 "I started the prrt treatment in 1-04-26 had second treatment 3-07-26 did not any problems." + (show)

Hi ... My wife is scheduled to see her doctor after being diagnosed with NETS metastasized in the small intestine. Surgery is possibly being recommended. What has been your course of action? Presently, I have been able to keep her in a positive mindset. It would be great if you could share your experiences.

rhb18 | @rhb18 | Mar 17 1:10am

Hello
Just had my second PRRT session. NETS started in my liver and despite surgery removing the small tumour within two weeks of it being identified, two years later NETS came back seeding in my liver ( regular scans identified this) and various other places - about 16 small tumours in all. My biggest issue has been fatigue post PRRT. Prior to PRRT I had few symptoms. I try and remain active but need to rest each day since my first session. I make sure I eat a quality protein meal every day - salmon beef chicken etc with vegetables/ fruit high in vitamin c to help with the absorption of iron and just get on with living. It tough living g with the uncertainty of not knowing if PRRT will be effective and if I will get leukaemia from the treatment but I’m very grateful to have the option to undertake PRRT and try and remain positive. I think each person has their own journey but my advice is to surround yourself with positive people keep living life as much as possible and take every medical opportunity you can get.

kurtjazzy01 | @kurtjazzy01 | Mar 16 6:29am

In reply to @sophiarose "@kurtjazzy01 Other than 3 days later I washed my bedding and all my clothes I wore..." + (show)

@sophiarthappse thanks kurt,

sophiarose | @sophiarose | Mar 16 12:32am

In reply to @kurtjazzy01 "Was wondering if anyone new if you have have to do something with bedding pillows etc..." + (show)

@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

kurtjazzy01 | @kurtjazzy01 | Mar 14 1:25am

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

kurtjazzy01 | @kurtjazzy01 | Mar 14 1:23am

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

kurtjazzy01 | @kurtjazzy01 | Mar 13 12:13am

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

kurtjazzy01 | @kurtjazzy01 | Mar 12 10:57pm

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

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

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)

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.