PRRT Treatment: What to expect?

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

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?

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!

Going for my 3rd prrt treatment in a few days. So far, just really bad fatigue that seems to get worse as I go. The other bad side effect im dealing with is that after each treatment so far, my white cells and nuetraphils drop drastically and have needed nuepergeon injections to bring those counts back up. The bone pain from those injections are the worst part. Anyone else expierencing something similar???

@thunderdad5 Hi and welcome to Mayo Connect. Sorry to hear about your bone pain. What were you diagnosed with to need the prrt?

@tomrennie, I have stage 4 neoindcrine cancer. The original tumor was blocking my small intestine and was removed. Then discovered mets on my liver, lymph nodes and a tumor on my rib. Did 4 months of lanreotide after which found the cancer had progressed and new mets in bladder, prostate and a new bone tumor on my clavicle. Have received 2 prrt with luthera and have my 3rd next week

@thunderdad5 It can be a balancing act between treatment and managing the side effects of the treatment. We sometimes figure out what works as we go. Are you still experiencing bone pain? What does it feel like? My NETs has spread to my bones, but I don't know if I can associate specific pain to it. Thanks.

I only get the bone pain when getting an injection to increase my immune system blood factors that drop allot after each prrt treatment. It lasts for about 24 hours, but it's berry uncomfortable

We have another question for those who have had the PRRT treatment. My husband had his 1st treatment on June 2. Everything went well. He has experienced the fatigue that many of you commented on. He is starting to lose his hair. We are wondering if that is also a side effect of the radiation. He just returned from a Canadian fishing trip. Coming back, they put a geiger counter on him. It registered 1700. The guard said that was the highest they had ever seen. However, our son googled it and found that is more of the median number than extremely high.

@rkklinger: I hope your husband is tolerating the fatigue that many experience during PRRT. I hope he has lightened his responsibilities and is able to take naps and rest when his body tells him he is getting very tired. Our bodies seem to regenerate during sleep and after all PRRT is working overtime killing our NET cells - at least we can accept some fatigue & added rest times! This treatment is only for 6mo. I’m over two years OUT of PRRT Lutathera treatment and am so grateful for the quality of life I am living.
You mentioned losing hair and my PRRT experience is that I lost hair on legs, arms, and some thinning of my scalp hair - some has grown back but minimal on legs & arms. My treatment for NETS has only been Lanreotide monthly shots and then PRRT when tumors progressed. Perhaps the loss of hair you are experiencing is a side effect of prior Radiation Therapy?
I feel you are fortunate to be able to receive these 4 infusions of Lutathera PRRT! Best health…