What helps with muscle aches and weakness after Lanreotide injections?

@doonman: Lanreotide 210mg is a standard 28 day injection for NET patients; it is touted to help control NET symptoms and improve reduced tumor growth. I’m in my 4th year of these injections and for me the side effects were constipation (no more constant diarrhea), face acne sores, flu like aches, tiredness & sore injection site. As time went by the side effects ceased and as of this months shot I only had one blemish sore appear on my face (Retinol has healed it quickly).
My above saga is to help you see that I believe Lanreotide 28 day injections are a necessary part of our NET cancer treatment… No Matter The Side Effects! I’m sure you will receive other NET peer opinions and it is always best to consult with your NET Specialist Oncoligist before you make all NET treatment decisions.
We have a rare type of cancer that is making great progress in providing us options for tumor progression, however so far there is no Cure. I encourage you to research this cancer and the many places it can metastasize. Best health to you..

@dbamos1945 Thank you for your response. It definitely seems to be a rare form of cancer but I'm hopeful further AI progress may help the researchers zero in on the cause and ultimately a cure. Your story is helpful and positive, thanks again and take care.

We agree with the comments made by dbamos1945. My husband's orginal tumor was found in 1995. It was removed surgically. At that time, he saw the oncologist every 3 - 6 months, eventually every year but there was no treatment. 12/30/22 he was rediagnosed. After many scans, biopsies, etc., we know that his body is full of tumors and there are a few tumors in his skull. He started on 120 mg of Lanriotide January 2023 every 28 days. He is now on 90 mg. His side effects are minimal. He does experience some tiredness and weakness at times but continues to live an active normal life. It is easy to question whether the tiredness and weakness are from the Lanriotide or because he is 82 years old. We believe the treatment is successful as his tumors have remained completely stable and are not increasing.
Because this is a rare cancer, we feel it is important to work with a NETS specialist. We totally trust our doctors at Mayo Clinic in Rochester and Scottsdale (where we winter). This is a difficult journey but some much progress is being made since we started down this road in 1995. God bless and good luck to you!

Dear Doonman
Lanreotide shots have been helpful for me with lowering progression and symptoms. I have been on the shots for about two years and the original muscle aches every month did not last. It took about six months to adjust. Now I only get fatigued for two or three days after the shots but it is doable. I hope that you soon experience a lessening of symptoms and progression. Here is a link to practical tips for Patients on the NET shots. https://www.ncf.net/post/practical-tips-for-patients-on-the-shot-somatostatin-analog

@maeve115 thank you for replying. I'm hopeful my muscle aches will subside. Responses such as yours are very helpful and hopeful.
Continued success in your fight against PNETs. Take care.

@rkklinger

Have your doctors discussed having Lutathera treatment? My husband has Stage 4 NET that started in the outside of his small intestine, then metastasized to his liver (inoperable) and was on two shots of Lanreotide a month. This worked well for 3 years, but then metastasized to his lymph glands, pancreas and lungs. Our Oncologist suggested he consider Lutathera treatments as it can shrink, or in some cases, eradicate small tumors & can extend his life for 3-4 more years on average. There are only about 20 hospitals in the US that are FDA certified to provide this treatment & the Mayo Clinic is one.
He elected to have this intense radioactive treatment (4 treatments every 2 months) and has had 3 of the 4 treatments to date, fortunately without any negative side effects. After receiving the treatment, he gets a follow-up Lanreotide injection and another Lanreotide shot 28 days before his next scheduled Lutathera treatment.
He will then have a PET DOTATATE scan about 1 1/2 months following his last Lutathera treatment & we will see how effective the treatment was. Following this, he will have monthly Lanreotide injections in hopes of maintaining & controlling the speed of tumor growth. We are hoping this will give him a good quality of life for several more years. I’ll let you know after his PET DOTATATE scan in May how successful the treatment was.
Good luck on your husband’s journey with this rare NET. Stay strong & try to enjoy every day.
Mary Davis

I have been taking Octreotide LAR 30mg for 8 years. I also have muscle fatigue and leg pain, especially after exercising. I take Ibuprofen for the pain, which helps, but still have aches and pain. I’m currently 1/2 complete with PRRT (Lutethera) treatments and was hoping if it works that I can stop Octreotide.
However, the recommended approach is to continue. I assume Lanreotide is similar, but not positive.

@espelandmt2: I wish you enormous success in your Lutathera PRRT NET treatment! Visualize those cancer cells “exploding” into oblivion! You have the power… feel the super energy in your veins directed to this UGLY cancer to destroy and shrink tumors every day this treatment is active in your body!
Positivity like this worked for me (June-Dec2024) and it can for you too. We ask for elimination with this treatment, but remember “Tumor Stability” is a win too!
The fatigue, weakness and muscle aches are a small price to pay for this treatment! All symptoms are a distant memory for me today (2/26) because I feel great, almost like my pre-NET days! Best days ahead!!!!

@mancos Thanks for the information. Dr Thor hasn't recommended PPRT yet. They have told us that it will happen in the future. His last scans were in October and everything was stable. We're wintering in AZ so the dr said it would be best to wait to have his scans when we return. So he is scheduled the 1st week in May for CT, Pet Dotatate, blood tests, etc. It feels like a long time to wait but he seems to be totally stable. He does have some leg pain when we walk but that seems to be the only time. Good luck on your husband's journey as well. Staying as cheerful and positive as possible is the best medicine!!
Kay Klingman