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Dealing with Lutathera treatments alone: Tips?

Posted by shirleyslominski @shirleyslominski, Mar 14 9:26am

I'm alone in my treatments for the necs and how I feel after the radiation is not good. It takes at least 6 weeks for me to start feeling good enough to drive. Unfortunately, my doctor when I first interviewed with her about my condition she seemed to be very knowledgeable and now through the course of my treatment she can't answer any of my questiond questions. All the information I'm receiving is on line. But they don't tell me about how awful I feel for 6 weeks it's horrible. Anybody else out there feeling as bad as me? I am taking THC gummies with CBG in it it does help my stomach a lot that's where my cancer is stomach and pelvis. I'm going to MUSC for treatment it's the closest place to me which is two and a half hours one heck of a drive. Has anyone else experienced what I have?

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phyllisden | @phyllisden | Mar 18 3:25pm
In reply to @shirleyslominski "I found a doctor who specializes in the treatment and she answered a lot of my..." + (show)
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I found a doctor who specializes in the treatment and she answered a lot of my questions. Most importantly, some people do experience what I have experienced and some have not. She listened to me she took notes she believed me. And when you say all about your balance that happened to me on my first treatment and I fell into the coffee table. I still have times when I can feel my equilibrium isn't there but I'm aware of it and I walk slow LOL. I had a treatment yesterday we'll see how I feel today so far not too bad yesterday was horrible especially cuz I had to drive 3 hours home but never mind. I hope you feel better and it's really hopeful when our doctors listen to us and look up the information and are willing to admit they don't know a lot about it. So that that's a good start.

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@shirleyslominski, I’m SO glad you found a doctor you feel comfortable with and who really listens to you.
I hope things continue to improve for you.

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shirleyslominski | @shirleyslominski | Mar 19 7:12am
In reply to @zacharycat "@shirleyslominski 22 years is quite a while. That they didn't cause problems until 2024 is encouraging...." + (show)
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@shirleyslominski 22 years is quite a while. That they didn't cause problems until 2024 is encouraging.
Mine were only found less than two and half years ago. No symptoms until two months earlier. At age 69 then, so I guess I can't complain either. They had already spread to the liver, maybe getting some tests earlier would have made a difference but I understand this is typical.

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@zacharycat
I was allergic to the treatments back in 2005 but luckily I had a very slow growing carcinoid and really did not have any side effects until 2024. My primary tumor was in the ileum back in 2005 and they removed part of it. I'm optimistic with this new drug I have one more dose to take in May and then I can have the pet Scan to see if any progress was made but I'm optimistic it it has. I hope you get better I am 77 years old so I had a good run
I wish you well on your journey. And I'm going to tell you something I feel so bad the first 6 weeks of treatment the only thing that help were gummies THC with CBG the place I go for it gives me a 30% discount because I have cancer. And the proprietor's father had cancer therefore he wants to help people and he has it's gotten me through this awful feeling it lifts your moods which is wonderful and a great help. I really hope things go well for you please let me know.

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