Has anyone had cramping pain in left side nearing 3rd PRRT treatment?

@mmar2025: My experience with PRRT was similar to some if the symptoms you have mentioned. When I felt “twinges” or “cramps” or stomach discomfort I just told myself that the treatment was working on those cancer cells. I accepted this as part of my treatment & to be expected throughout the 6 months.
I had great results from the PRRT and am back to feeling like my ‘ol self. My treatment was June-Dec, 2024. I continued get MRI’s every 3 months and can share that my tumors have deteriorated back approximately to the size & number I was diagnosed with in 2021. I consider this a win! You are lucky to be receiving a great treatment.

@dbamos1945 Thank you. That is encouraging an I appreciate the quick response. I hope I have the same outcome as you.

I have had a pain in my left leg, I just assumed it was a "Charlie horse" it happened a couple of times.. I never really related it to the treatments.. It may have been! After 1 year my MRI is showing the Tumors are still shrinking... and I haven't had any leg cramp in quite some time..

I also had back pain around my 3rd and 4th PRRT treatments. I noticed it was worse at the end of the day and sometimes getting up from sitting was very difficult. I went to physical therapy treatments which didn’t really solve the problem but I think were still beneficial.
I will say that on PRRT I had a lot more energy than I do now on Cabometyx. Used to get up around dawn to bike or walk to treatment, stretch and lift weights, then worked a full day. Now fatigue is much worse and I have frequent stomach or esophagus pain. All these treatments have their side effects.

I'm sorry that things changed. I have read about side effects of Cabometyx. I am reading about Alpha Particle PRRT, but the "ducks have to be in a row" in order to have this done. They are close to having it approved. There is a particular type that can be used even after the initial PRRT treatment. Possibly, things will get a bit better for you. Keep me posted.

@mmar2025 I went to a clinical trial interview for Alpha PRRT last week. Unfortunately I was not selected due to prior Lutathera treatment. My understanding was that this was a one year exclusion but it seems that was wishful thinking on my part. The doctor also mentioned that extra PRRT treatments are difficult to get Medicare to approve.

It appears as if the prime subjects are naive candidates. I'm sorry. And I also thought it was even a six month exclusion after Lutathera treatment, but that doesn't seem to be the case. I am hoping if this gets approved that Medicare will step up to the plate, but that is a "wait and see". I don't know if persistence would help on that front.

This was something I am following, but, of course, they are not recruiting and it is too soon for me. https://clinicaltrials.gov/study/NCT05153772

I am having good response to the Lutathera so far, but until the "pictures (scans)" are taken, I won't know the outcome. My case is Neuroendocrine Pancreatic tumors metastasized to the liver. I looked like a Christmas tree inside on the Pet Dotatate scan, so I had lots of receptors (Krenning 4). I don't know how critical those receptors will be or if there will be enough for the next option, such as the above. What is hard is that all of our cases are different and we can only piece together what others might offer. We wait and hope.

@mmar2025 , Hello! Did you have surgery for the pNET?

@pavlina60 No. I am inoperable.

@mmar2025 ,so sorry! I hope an alternative treatment works for you! I had huge (15×20cm! )Pnet(with liver mets) that was surgically removed on 2/1/23 and I am on monthly Lanreotide injections since. Prayers and healing thoughts to you! We are though zebras!💜🦓