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PRRT for stage 4 pNET with mets to liver, small intestine & skull
After going through many years of misery & countless investigative scans, I was finally diagnosed with Stage 4 pNETs on 4 July 2023: I had a Whipple on 31 October 2023 then spent a month in hospital trying to recover from various complications. I started monthly Lanreotide injections 5 months later (March 2024) and continued with those until November 2025 but I did not receive any benefit whatsoever from this medication, as my cancer continued to progress. PRRT was not available in my city and I was far too ill to travel to the only city in my province to offer that treatment, because it was some 4 hours away by car. I now have a fantastic oncologist who is an internationally reknowned NET specialist and who fought valiantly to bring PRRT to my city, which gave me the opportunity to start PRRT. My first treatment occurred on 10 March 2026. The major side effect I immediately began to experience was extreme fatigue, along with continued intestinal pain and severe diarrhea, which has plagued me relentlessly for at least 5+ years, but which (no surprise) worsened after the Whipple. Like clockwork, two weeks after my first session of PRRT, I began to experience significant hair loss which, by the 3rd week, was extremely noticeable: in fact it was so bad, I will have the remaining few strands shaved off on 11 April 2026. I was aware that some hair loss was likely inevitable, which I thought was a fair price to pay for an opportunity to have PRRT, however I did not expect to end up completely BALD just a month after commencing treatment! I am very sad that I’m losing all my hair at 62, especially because I previously had lovely thick waist-length blonde hair, but I’m very hopeful that it will eventually grow back to some extent. In the meantime, I’ve purchased a couple of “cancer beanies” so I don’t look quite so ridiculous. Has anyone else in this group had such extreme hair loss so shortly after commencing PRRT and, if so, has anyone eventually had any regrowth? I would really value hearing from other patients in this regard, particularly since I am literally the first and only patient in my city who has had PRRT. Thank you in advance for your time.
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@kaiulani: I’m sorry to hear you have had such reaction to your Lutathera PRRT 4 session cancer treatment for Neuroendocrine PNET cancer.
I had this treatment for my NET in 2024 with great results and now enjoying feeling like my pre-cancer self!
Everyone may experience side effects, but for me I had hair thinning, stomach issues and lasting fatigue. I napped regularly, ate very light snacks and meals, drank at least 64 oz. water and concentrated on this potent treatment destroying cancer cells. It seemed to work for me (we know progression of our disease is always a threat).
If I were you I would get a wig to wear everyday. Seeing yourself in the mirror affects how we feel about ourselves, and I believe we should take care to make ourselves look the best we can! Paula Young Wigs (see catalogue or look on internet) are priced affordable ($30-50) and I think you might like the styles they offer in acrylic hair wigs. Check it out!
The other suggestion I have is regarding the diarrhea: taking Imodium at first loose bowel, followed by another at next loose bowel worked for me. This allowed me to be able to leave the house & chat with friends & feel more normal.
I sincerely hope you find relief from side effects soon.
Try to keep your attitude positive and when you have some discomfort - get some rest & tell yourself this treatment is working to give you more time and improved quality of life. The 6mo. treatment will be over soon & I wish you much success in controlling your tumor progression and perhaps killing off those nasty tumors!
You have many of us to lean on as you go through the challenges our NET cancer offers. I am happy that you now have a NET Specialist Oncologist to guide your treatment.
I will be thinking good healing thoughts for you! dbamos1945
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3 ReactionsHi I had prrt in 2023. I did experience some hair loss but my hair recovered after about 1 year from last treatment. More important was it stabilised my nets and shrunk some a bit. I am still stable today. Prrt has great affect on nets growth and the reaction I found was less each time.
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4 ReactionsI had initial PRRT in 2021 with excellent results and some hair loss (also early on). My hair grew back quickly after I completed the 4th round. I am now enrolled in a clinical trial for the new Alpha PRRT after some recent progression, and have just completed my second treatment of 4. I am again experiencing hair loss, but I'm 'coping' by cutting it very short and no blow drying or styling. Time will tell if I make it to the end with my short hair!!! If your scalp feels 'tingly' or irritated, ice packs really help me. I've heard some claims that ice caps can help preserve hair, but I'm not convinced...but it does help to use an ice pack to relieve irritation the couple of days after treatment. My other major side effect is fatigue--which is much less after the first week or two and seems better with treatment 2 than it was with treatment 1--same pattern as I had with the earlier PRRT.
Hang in there, it is worth it! Sending you positive thoughts and energy.
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6 Reactions@kjstein Many thanks for your kind & very detailed response to my inquiry, I really appreciate your having taken the time to read my inquiry & then share your experience. I live in Alberta, Canada which means that treatment options for this sort of cancer are extremely LIMITED: it’s so vexing for me to study all of the treatments available elsewhere, only to discover that I probably won’t live long enough to receive any really USEFUL treatment options. As a rather snarky aside, I will add that I have repeatedly been offered MAiD (medical assistance in dying) because, after all, as a Canadian who was born & raised & still resides in Calgary, not to mentionhaving spent nearly 40 years representing abused children in my litigation (legal) practice, I AM APPARENTLY NOT WORTH SAVING. What an affront! I wish you great success with your treatment and I will pray for you, if that’s all right 🫂
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4 Reactions@bren1 Thank you so much for your kind response to my inquiry! I greatly value being able to post questions and receive feedback and support from other NET patients, because I am not aware of any other NET patients in my area. Of course I’m simultaneously vexed and sad about losing my pretty hair, I’d rather be bald and still alive than dead with glorious long blonde hair lol! I’m trying to console myself with mentally computing all the money I can now save on hair care products 🙂
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