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PRRT Treatment: What to expect?

Posted by rkklinger @rkklinger, May 29 10:35am

My husband is having PRRT with Lutathera on Tuesday. After reading the information sent from Mayo, he is a little concerned about side effects. What should we expect after the treatment Tuesday afternoon? Are there immediate side effects? Any thoughts will be appreciated.

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blee123 | @blee123 | Jun 2 11:33am
In reply to @bren1 "I had prrt nearly 3 years ago. It shrunk my tumours in total by about 20%..." + (show)
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I had prrt nearly 3 years ago. It shrunk my tumours in total by about 20% and they are still stable so well worth it. I just found myself getting tired for about 2 days after each treatment. The actual prrt is painless and only takes about 1 hour all in. Cannot recommend it high enough.

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@bren1 hi do you do any maintenance after prrt? My husband with pnet ki 5% is being asked to do a 5th cycle...

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bren1 | @bren1 | Jun 2 1:37pm

Hi I get 3 weekly lanreotide injections thats about it really. I limit my sugar intake and exercise quite a lot. As you are now going for the 5th one, has your husbands tumors starting growing again? Is he getting regular lanreotide injections?

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rkklinger | @rkklinger | 6 days ago

Thank you to everyone who responded to our request for side effects of PRRT - all with encouraging comments. I actually posted an update a few days ago but must have done something wrong as I can't find it. Long story short, his 1st tumor was found in 1995. In 12/23, we found that his body and skull are now full of NETS. He became stabilized on Lanriotide. He is Stage 4. Upon our return to MN from AZ in May, we were told that the tumors are increasing making him eligible for the PRRT treatment. Ron did very well during the treatment on June 2. His only side effect seems to be fatigue the first 2 days. It actually took about 5.5 hours. We had several other appointments at Mayo so were there for 4 days. One dr is from Physical Medicine & Rehabilitation as he had a severe AFib attack in November ending up in ICU. As far as we know, it is not connectd to the NETS. In March he had a pacemaker implanted. His lung collapsed 20%. Recovery from everything has been slow so we were thankful that the PRRT went well. It sounds like they will do a PET scan inbetween treatment 2 & 3. Again, we are so thankful for this group and all of the positive comments we received from our first post. May God bless you all on this NETS journey!

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