How long do I wait between injections and PET scans.

Posted by ce1b @ce1b, Jul 15, 2023

What is the wait period between the PET scan and my next Lanreotide injection?

I had to wait 36 days before my last injection and the PET scan.. I was hoping to get an injection a day or 2 after the scan however the schedule pushed my oncologist scan review and my Lanreotide injection out another week.

Now I’m going on 6 weeks without the lanreotide in my body.

Is this normal or is it better to tighten up the schedule as not have such a long wait period. I’m full of anxiety just thinking the tumors will spread without this medication.

Thanks for any feedback
CEB

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

I get my injections every 4 weeks. I have had 4 and will do my first ct scan after sbrt at 3 months out on Monday. I have lung carcinoids.

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I go to KU Med, and they have always scheduled my PET scans for the day before my next injection.
I started on Sandostatin, then was switched to Lanreotide, and am now back to Sandostatin. It's my understanding these are both slow releasing drugs so I would think they're still working for you. Try not to panic, which is easier said than done... I've been living with metastatic NET since 2007!
Best wishes on your journey!

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Hi @ce1b

I take Octreotide (similar to lanreotide) injections every 4 weeks for my lung NETs. It stays in your system at least 4 weeks. When I first started taking it, I read that it actually takes a couple months to get the full benefit because there was a little left over in your system after 4 weeks so the overall dose in your system was higher starting month two. I don't know where I read that, but it did take about 3 months to really improve my respiratory symptoms so that makes sense. Also, about 18 months ago, one nurse didn't go deep enough with my injection so the medicine all ended up in a lump just underneath my skin for weeks and was never properly absorbed, but there was no impact on my tumor growth. I know all cancer stuff is so nerve-wracking, but I hope that helps.

Oh, I also see your shot is delayed because your scan review appointment is delayed. Because my oncologist is busy and couldn't always see me again in exactly 4 weeks for my follow-ups, I finally asked if we could just schedule the oncologist follow-ups separately so I could always receive my injections on time. Now I have my injection and labs every 4 weeks exactly (both handled by the nurse only) and I see my oncologist on a different day. In fact, I was able to reduce my visits with him to every 3 months since he could see my monthly labs (I'm also being treated for breast cancer). Anyway, it has worked out very well to do it that way if your oncologist and insurance will allow it. Best of luck to you on your scan results too.

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Thanks…. My diagnosis was Large Cell lung NETs, I was told it was more aggressive than the small cell. I’m sure this was a onetime event in the schedule due to the Memorial Day interference with the injection and PET scheduling. It’s comforting to know that the schedule has some flexibility to it.

I’ll have my follow up with the oncologist and my injection on Tuesday. That will get me back on track and hopefully bring some good news too.

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@kellysg

I go to KU Med, and they have always scheduled my PET scans for the day before my next injection.
I started on Sandostatin, then was switched to Lanreotide, and am now back to Sandostatin. It's my understanding these are both slow releasing drugs so I would think they're still working for you. Try not to panic, which is easier said than done... I've been living with metastatic NET since 2007!
Best wishes on your journey!

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are pet scans bad?

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They aren't bad for me at all! They tell you to drink lots of fluids after to get the contrast out of your system, and I do that. I usually go straight home after, as diarrhea usually kicks in that afternoon. I'm missing most of my small intestine, tho, which doesn't help.
You'll do fine!!!

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My octreotide injections are scheduled every 28 days, and my next 3 are on the calendar.. It’s been helpful in allowing us to plan some getaway trips..

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Hi Ce1b,
I have been receiving lanreotide injections for three years. I took a break for about 6 months when the side effects were too overpowering. I've also had several weeks of delays because of vacations (mine and the doctor's.) The six month break caused my blood test numbers to go up, but they have all eventually dropped down to the my "normal" - high but steady.

Now about PET and MRI and other scans. These ought to be when you have not just had an infusion (particularly iron.) I find it challenging to wait for the results. In addition it's important to wait for the tumor board to look the results over because their findings often conflict with those developed by the radiologist. We all feel such stress waiting to find out the results and to find out the analysis of the results. It can take up to a month in my case. So I take deep breaths and remember that these are often slow-growing tumors and the growth is even slower with the lanreotide.

I hope that this helps! Here's hoping that the scans see nothing new.

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I had one PET scan before treatments began. I have had three treatments now, over a period of about 18 weeks. I believe there will be another PET soon, to see how effective the chemo has been. My understanding is that the chemo wipes out a person's immune system on the first day of each treatment. Then the bone marrow is jump started so it will quickly produce healthy blood cells. The time between treatments allows that process to go to completion, and then a new treatment is scheduled. When the PET comes up negative, a person is in remission.

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@cctoo

are pet scans bad?

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Nothing to it. Just lie still on your back, and let the machine do its job. It doesn't take long. I didn't have any after effects, and was able to drive myself home. Don't worry about it. I'd rather get a PET than go to my dentist.

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