PRRT Treatment: What to expect?

@hopeful33250 this is exactly the question I asked my team after the first treatment so I understand how you are feeling as there is always initial apprehension that the treatment is not effective. I was told that the gold standard to assess the effectiveness of the full PRRT treatment is 3 months after the last treatment as the impact after each treatment really takes a full three months to show up. I think I could have pushed for a PET scan after the second treatment but after the second treatment my attitude changed somewhat and I started to feel that it was best to wait for the full picture rather than view pieces of the puzzle ad hoc. Also after the second treatment my blood work started to show significant signs of decreased tumour activity and this has been encouraging, although blood work i keep being told is not the gold standard as to the effectiveness of treatment ( but it certainly helps to see the numbers go down!) I do have a standard CAT scan the morning after each treatment so my team can see how the radiation has settled ( and look at my other major organs to ensure they are unscathed I guess) but it also shows ( in less detail of course than a PET) how the tumours are shrinking from the prior treatments. The morning after the first treatment I could not observe a change in tumours with the less detailed CAT scan, just that their darkness suggested they had absorbed a big hit of radiation, which felt like a victory in and of itself. However after my latest CAT scan, after my final treatment this week, I have noticed my largest tumour looks about 1/3 of its original size, which is certainly giving me hope. My team agreed and we all felt positive but let’s see what the PET shows. I think it’s important to trust your team and go with what is recommended. That said I am certainly now very eager to see the results of my PET scan scheduled for October and hope and pray that the 4 PRRT sessions have given me my old life back for a period of time, hopefully a long time but it’s all a win. Keep the faith Ron.

@rkklinger my reply to you & Ron was posted under @hopeful33250 but thank you also to @hopeful33250 for your kind comments and I hope this reply also answers your question

@hopeful33250 Immediately after, he noticed it for about a week. He would need to take a nap. But since then, he mainly goes to bed a little earlier than he had before treatment. We're interested to see how that will go with the 2nd treatment.

@rhb18 Thank you for letting us know your experience. It is good to know that the preference for the PET scan is 3 months after the 4th treatment. My concern is that with tumors throughout his entire skull and body, it is difficult to know what is possible. Stabilization will be a win. Decrease in tumors will be a miracle!

@rkklinger I hear you! With about 30 tumours, mostly small but with two starting to grow bigger (which finally made me take up the offer of PRRT) I felt the same way. I was fearful stopping my monthly hormone jabs to have the PRRT treatment could cause an explosion of new tumours & increase existing ones. As it turns out I wish I had taken up PRRT treatment even sooner ( it was offered earlier) as it really is the Big Stick in fighting NETs. Of course this has to be weighed up against individual health concerns but from my perspective it’s been a welcome & positive experience,

Watching the tumours absorb the radiation via the CAT scans each session has been unbelievably satisfying. Because of my initial fear I have also maintained my hormone jabs around the PRRT treatment as much as possible which my team have supported, although I can’t have a hormone jab within around 3 weeks of treatment so have delayed some jabs. My team has worked with my oncologist to ensure all has coordinated smoothly to keep the jab routine as consistent as possible.

I was very apprehensive about starting PRRT but as each session finished I became more & more grateful that I was going down this track. The fatigue has been pretty tough, but manageable. I’m usually very active so being washed out on the couch for at least a week after each treatment has been hard, but a small price to pay. I might add that for 24 hours after my last treatment I had some new stomach pain but it was minimal and has cleared. I think there is a reason why treatments seem to stop at 4 sessions - my body has coped well but I think a 5th session would change that. After the last session I felt more hopeful than I have for years, which has been such a great feeling, but we are waiting to see the full results from the PET scan in October before we book that big trip to the UK and side trip to visit our dear NYC friends who have bought a Holiday home in Portugal. The fact that I’m even thinking about all this tells me I’m starting to feel like my old self again…hope is an amazing drug.

@rhb18: It is with great pleasure I read your post revealing that any reservations toward PRRT Lutathera NET treatment are in your “rearview- mirror”. Soon you will get results of your MRI w/Evoist contrast! I can recall how anxious I was.
I am now 2+ yrs post PRRT and just received results of my “every 3mo MRI/Blood Lab tests”. Every scan has shown the PRRT treatment sill working in my body, shrinking tumor cells & maintaining “Stability”. It was just what my body needed to give me more stable time with my family.
The “fatigue” is much better, but still with me. Some days I can accomplish everything I wanted to; while others fatigue rules. I incline to think that this effect will be with me ‘til the end. I adjust my life and accept this down-time as what my body needs.
I wish you so much happiness in finishing your PRRT infusions. My wish for you is tiny tumors remain and some no longer visable; but also know that “Tumor Stability” is a huge WIN and offers you good quality of life. I am grateful for your courage to improve your days. Kudos!!!
Bette dbamos2945

@rhb18 Thank you for sharing your journey. How exciting to be feeling well enough to go on a big trip! God bless you!

@dbamos1945 your response was heartwarming to read. Thank you. I’m very happy to hear of the success and stability PRRT treatment has and is providing you 2+ years down the track! I wish you many more years of stability to come. After my final treatment last week my team said to me words to the effect ‘live life and work to get your muscle strength back as much as possible should you find yourself needing a second treatment in 3 or 6 or 9 or 12 years from now as we will be here for you’. This too gave me hope for a long life ahead with more treatment ( which is becoming more advanced each year) if and when I need it. I’m just feeling grateful and hopeful right now so that’s a good place to be. Wishing you the very best for a long and happy life 🙏🏻

@rkklinger it’s all thanks to the PRRT treatment so I’m thankful I’ve gone down this track. Six months ago I couldn’t imagine going on this trip we have been hoping to do. Each person’s experience is an individual journey of course but if 4 sessions of PRRT looks like a viable option dont be fearful. It’s very positive that there has just been fatigue so far and I’m wishing you all the very best! Those living with NETs, and their loved ones, understand the feelings you are experiencing so you are not alone. The positive responses from others about results after PRRT is also fantastic & hopeful ‘real life’ feedback offering comfort to those of us embarking on this journey

* not that I’m in anyway downplaying fatigue as it’s just awful to experience severe fatigue, but it can be managed somewhat, and appears to be less debilitating than some other side effects.