1. < Neuroendocrine Tumors (NETs)

Update: Lutethera treatment is over

Posted by sandy23 @sandy23, Jan 10 10:49am

Hi all, just wanted to check in with an update for everyone. Sorry it has taken some time, treatments, vacation, holidays and sickness have all been happening in our end.
So, I wanted to let everyone know how things went to hopefully help in your jounry, one that we all are on and in different stages. Hubs started his Lutathera treatmenr in Aug with treatment every 8 weeks, ending on Dec 6th for his last treatment. If y'all aren't familiar with this it us an IV radiation treatment that is given every 8 weeks, is VERY expensive and must be approved by your insurance as well as you have to be accepted into the treatment program....ie; not all stages or labels if the disease warrant this treatment.
On the day of treatment hubs has NOT had an injection of Octreotide for 4 weeks....Very important . He goes in, they set him up with 2 IVS one to give him the drugs he needs for protection of his kidneys, nausea meds, and I believe potassium....(sorry I should of referred to the Lutethera info for more accurate drugs given). Anyway, he gets the initial meds first to get him ready for the Lutethera (radiation). This is all done in the Nuclear Medicine depth of the hospital. After he's been monitored they bring in the radiation. The Nuclear med Dr comes in, has a chat with the hubs and myself. Asks how the last treatment went, any questions, concerns and so on. All that done. Next the radiation is started in his other IV by the nuclear medicine Dr. They check the level of radiation at different times throughout the process and after about 45 min or so the radiation is done. Dr is still there monitoring the entire time asking questions, chatting and finally checking his radiation levels. Then more meds are given to help protect him. Another half hour goes by. Many trips to the bathroom throughout the day (yes, a day long trip....7:30 to usually 4ish. Being did and lots if liquid, preferably water). Then after everything is given the nurse gives him the Octreotide shot. Pose keep in mind hubs is ALWAYS being monitored, they want him up to the bathroom every hour and the nurse is keeping track if his every move. Lol but luckily we were fortunate to get a wonderful nurse, the same one each time and the same Nuclear Med Dr. It was comforting to have familiar faces.
As far as side affects go here is what we noticed. His hair was sorta ready but not in the normal way, just different feeling. Yes, we think he lost a little bit of hair but only bc he could see it in the comb. I noticed slight thinning but nothing major. His hair did seem to get more gray but that that could be a coincidence and not an issue. We bought a Geiger counter and he registered high for about 2.5 to 3 weeks. At which time we took precautions to where we were still sleeping in separate beds and using separate bathrooms as well. Recommended is 3 days of both only. We just didn't want to take any chances. I'm not a spring chicken and have my own health issues.
One thing I noticed that has alarmed me is that he is having short term memory loss. To save on reading more I'll just say I did test this out in several occasions and the nuclear medicine Dr and his oncologist all noticed it as well. In taking with the Nuclear Med Dr he stated this is NOT a side affect and to tall to the oncologist. Next visit I brought it up to the oncologist and he recommended a neurologist visit is warranted. However, between the last 2 oncologist visits we did not get a call to schedule a visit. The 2nd visit to the oncologist I couldn't go due to the crud going around and me not wanting to expose anyone in the office, mask or otherwise. I mentioned to my hubs to find out about it and he things he doesn't need it. He feels it's due to stress or a side affect of the radiation or just getting older. All of these things we both discussed with both Dr's. So for now, since he's due to get a CT scan on Friday and I'll be going to the next visit we'll let it go. I can't force him or talk him into anything when his mind is set on something.
That's about it. Treatments are over, CT is set up... earlier than expected but Oncologist said it'll be a good baseline. So we'll see. Short term memory is still a thing, still frustrating on my part. I have to stop and think... is it the cancer or selective hearing? Lol Either way I hope it's not serious. All I can do is pray and relay what's going on and the Dr's knowledge. Hope this helps.

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 10 3:20pm

Hello @sandy23,

I so appreciate the detailed description of your husband's Lutathera treatments. This post will be so helpful for folks anticipating this experience and will help them to know what to expect.

I'm sure you are looking forward to the getting the results of the scan to see how effective the treatments have been. I'm wondering: Was your husband's appetite affected very much as a result of the treatments? Was there any significant weight loss?

REPLY
1 reply
lindaamos | @lindaamos | Jan 10 4:32pm

Thank you so much for the information. I’ll start Lutethera infusion on February 6th . I wish is was sooner as the monthly injection has stopped working and my numerous liver and pancreatic tumors are growing . Reading your post put me at ease !

REPLY
1 reply
sandy23 | @sandy23 | Jan 10 8:39pm
In reply to @hopeful33250 "Hello @sandy23, I so appreciate the detailed description of your husband's Lutathera treatments. This post will..." + (show)
@hopeful33250

Hello @sandy23,

I so appreciate the detailed description of your husband's Lutathera treatments. This post will be so helpful for folks anticipating this experience and will help them to know what to expect.

I'm sure you are looking forward to the getting the results of the scan to see how effective the treatments have been. I'm wondering: Was your husband's appetite affected very much as a result of the treatments? Was there any significant weight loss?

Jump to this post

No his appetite was not affected. I forget to mention that his nights sweats are back. And let me clarify his hair was "greasy" in a weird feeling way. My phone made a lot of typos and as much as I try to correct I missed plenty apparently.

So, no appetite issues or weight loss. He seems to have a cast iron stomach. He still has quite a bit of diarrhea but has always had it since the shots and most recently more often while the tumors started growing and spreading.

We are looking forward to the scan but it was anticipated to occur in the late spring or early summer. Giving it time to have full affect of the treatment. In the back if my mind I wonder if the Oncologist is concerned that there's still growth possibly in his brain since he had the memory loss. But I'm hoping that's MY brain on over kill.

REPLY
2 replies
sandy23 | @sandy23 | Jan 10 9:01pm
In reply to @lindaamos "Thank you so much for the information. I’ll start Lutethera infusion on February 6th . I..." + (show)
@lindaamos

Thank you so much for the information. I’ll start Lutethera infusion on February 6th . I wish is was sooner as the monthly injection has stopped working and my numerous liver and pancreatic tumors are growing . Reading your post put me at ease !

Jump to this post

I'm glad that my description of the "day in the life of Lutethera " will help you. My question to you is..... if your tumors have spread have they suggested or recommended liver "debulking"? If you'll read one of my earlier posts my hubs had liver debulking due to the cancer having spread and grown. Essentially the same thing, the shots stopped working. Since the liver surgery wasn't as successful as hoped that's when they suggested the Lutethera. Please do your research on Lutethera. If you Google it the makers of it.... possibly Novartis.. can't remember but anyway there is heat info about it. The treatment, the dude affects, precautions etc. I will say, being that you're a woman there are more precautions for women, especially if you're of child bearing years. So with that, you'll need to consider all of the possible down sides to the treatment as a woman. No more kids in our future but if that's something in your future really do your research. In going thrive the treatment let the Dr know any and all symtoms/side affects. This is a fairly new treatment in the US and they are still recording how patients are doing. Good luck to you as you go through this. Oh and in my post I my phone changed something important. Bring FOOD and something to drink. Preferably water or Gatorade. You can bring snacks etc. You'll be there the entire day. I made sure he had something mild in case he wasn't feeling good. I brought some toast with jelly, applesauce, crackers and some cooked chicken, chips. And he wanted a peanut butter and jelly sandwich. We went prepared with this to do, and eat and drink. Wear comfy, easy on/off clothes. Remember you'll have 2 IVs in and have to go to the bathroom hourly. Also, it's good to go with someone. Just in case you're not up to driving. That's the other thing. He got really tired after we got home and did about 3 weeks afterwards with bouts of extreme tiredness, weakness and lightheadedness. But those were short and quit where laying down helped. The sun was a BIG factor. I don't recommend going in the sun for any length of time for about 3 weeks. Normal in and out, to and from work. I would also not recommend going TO work for at least 2 weeks. You'll be radioactive and get tired easily. Again they say 3 days. We aired on the side of caution as my hubs works with quite a bit of young, and some pregnant people. The sun was hard on him. And quick.
So try to limit your exposure. I'm not saying stay in the entire time just don't go out to a park and sit in the direct sun. A hat won't make a difference. It's the sunshine and the heart. Since you'll be going into June keep in mind that with every treatment the dude affects last longer and are more intense. I'm not trying to scare you bc all of the above things were easy to deal with. They were new to him so with every new one he realized he had a few changes to make. I'm just trying to give you a heads up so you don't find out like he did. He went outside to work in the garage in Aug or sept and came in the house really quick and flopped down on the couch and fell asleep. After he woke up he said he got overheated and lightheaded. Luckily he felt it right away and was able to lay down quickly. Keep in mind you may not have any symtoms at all. These are just his experiences, and honestly the were mild in comparison with other treatments for other cancer. He is very lucky he wasn't sick and in bed. Good luck to you and let us know how you do through all this.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 10 9:26pm
In reply to @sandy23 "No his appetite was not affected. I forget to mention that his nights sweats are back...." + (show)
@sandy23

No his appetite was not affected. I forget to mention that his nights sweats are back. And let me clarify his hair was "greasy" in a weird feeling way. My phone made a lot of typos and as much as I try to correct I missed plenty apparently.

So, no appetite issues or weight loss. He seems to have a cast iron stomach. He still has quite a bit of diarrhea but has always had it since the shots and most recently more often while the tumors started growing and spreading.

We are looking forward to the scan but it was anticipated to occur in the late spring or early summer. Giving it time to have full affect of the treatment. In the back if my mind I wonder if the Oncologist is concerned that there's still growth possibly in his brain since he had the memory loss. But I'm hoping that's MY brain on over kill.

Jump to this post

@sandy23

I'm sure it is a very easy thing to go into over kill as you consider all of the possibilities. Do your best to relax (easier said than done, I know).

REPLY
hollywood817 | @hollywood817 | Jan 11 9:27am
In reply to @sandy23 "No his appetite was not affected. I forget to mention that his nights sweats are back...." + (show)
@sandy23

No his appetite was not affected. I forget to mention that his nights sweats are back. And let me clarify his hair was "greasy" in a weird feeling way. My phone made a lot of typos and as much as I try to correct I missed plenty apparently.

So, no appetite issues or weight loss. He seems to have a cast iron stomach. He still has quite a bit of diarrhea but has always had it since the shots and most recently more often while the tumors started growing and spreading.

We are looking forward to the scan but it was anticipated to occur in the late spring or early summer. Giving it time to have full affect of the treatment. In the back if my mind I wonder if the Oncologist is concerned that there's still growth possibly in his brain since he had the memory loss. But I'm hoping that's MY brain on over kill.

Jump to this post

Helpful info, thank you. How old is Hubs?
Tom

REPLY
1 reply
lindaamos | @lindaamos | Jan 11 1:05pm
In reply to @sandy23 "I'm glad that my description of the "day in the life of Lutethera " will help..." + (show)
@sandy23

I'm glad that my description of the "day in the life of Lutethera " will help you. My question to you is..... if your tumors have spread have they suggested or recommended liver "debulking"? If you'll read one of my earlier posts my hubs had liver debulking due to the cancer having spread and grown. Essentially the same thing, the shots stopped working. Since the liver surgery wasn't as successful as hoped that's when they suggested the Lutethera. Please do your research on Lutethera. If you Google it the makers of it.... possibly Novartis.. can't remember but anyway there is heat info about it. The treatment, the dude affects, precautions etc. I will say, being that you're a woman there are more precautions for women, especially if you're of child bearing years. So with that, you'll need to consider all of the possible down sides to the treatment as a woman. No more kids in our future but if that's something in your future really do your research. In going thrive the treatment let the Dr know any and all symtoms/side affects. This is a fairly new treatment in the US and they are still recording how patients are doing. Good luck to you as you go through this. Oh and in my post I my phone changed something important. Bring FOOD and something to drink. Preferably water or Gatorade. You can bring snacks etc. You'll be there the entire day. I made sure he had something mild in case he wasn't feeling good. I brought some toast with jelly, applesauce, crackers and some cooked chicken, chips. And he wanted a peanut butter and jelly sandwich. We went prepared with this to do, and eat and drink. Wear comfy, easy on/off clothes. Remember you'll have 2 IVs in and have to go to the bathroom hourly. Also, it's good to go with someone. Just in case you're not up to driving. That's the other thing. He got really tired after we got home and did about 3 weeks afterwards with bouts of extreme tiredness, weakness and lightheadedness. But those were short and quit where laying down helped. The sun was a BIG factor. I don't recommend going in the sun for any length of time for about 3 weeks. Normal in and out, to and from work. I would also not recommend going TO work for at least 2 weeks. You'll be radioactive and get tired easily. Again they say 3 days. We aired on the side of caution as my hubs works with quite a bit of young, and some pregnant people. The sun was hard on him. And quick.
So try to limit your exposure. I'm not saying stay in the entire time just don't go out to a park and sit in the direct sun. A hat won't make a difference. It's the sunshine and the heart. Since you'll be going into June keep in mind that with every treatment the dude affects last longer and are more intense. I'm not trying to scare you bc all of the above things were easy to deal with. They were new to him so with every new one he realized he had a few changes to make. I'm just trying to give you a heads up so you don't find out like he did. He went outside to work in the garage in Aug or sept and came in the house really quick and flopped down on the couch and fell asleep. After he woke up he said he got overheated and lightheaded. Luckily he felt it right away and was able to lay down quickly. Keep in mind you may not have any symtoms at all. These are just his experiences, and honestly the were mild in comparison with other treatments for other cancer. He is very lucky he wasn't sick and in bed. Good luck to you and let us know how you do through all this.

Jump to this post

I can’t have debunking or Lithotrypsy as my liver has over 100 tumors per estimate. Fortunately, my child bearing years have long since passed, my kids are grown and gone . I plan to isolate myself from my husband and fur babies for at least 3 days . I want to stay in the RV but my hubby says no so I’ll stay in the spare bedroom. I’ve been through chemo and radiation for breast cancer so I have a pretty good idea of what’s ahead . My oncologist gave me a book on the treatment also . I bought a wig so I’m ready if I need it . I’m looking at it as 3 days by myself reading and watching TV doesn’t seem so bad !😂 Thank you again for your time !

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 11 9:10pm
In reply to @lindaamos "I can’t have debunking or Lithotrypsy as my liver has over 100 tumors per estimate. Fortunately,..." + (show)
@lindaamos

I can’t have debunking or Lithotrypsy as my liver has over 100 tumors per estimate. Fortunately, my child bearing years have long since passed, my kids are grown and gone . I plan to isolate myself from my husband and fur babies for at least 3 days . I want to stay in the RV but my hubby says no so I’ll stay in the spare bedroom. I’ve been through chemo and radiation for breast cancer so I have a pretty good idea of what’s ahead . My oncologist gave me a book on the treatment also . I bought a wig so I’m ready if I need it . I’m looking at it as 3 days by myself reading and watching TV doesn’t seem so bad !😂 Thank you again for your time !

Jump to this post

Hello @lindaamos,

I just received a notification about a podcast about PRRT treatments that you might be interested in. It was presented today but here is a link to the recording:

https://www.lacnets.org/jan2024
REPLY
1 reply
lindaamos | @lindaamos | Jan 12 7:57am

Thank you so much ! I plan to go to Moffitt and am gathering all the tests they asked for ! I have family in Tampa so it was the easiest choice for me to go there for a second opinion. Once I have my first treatment and see how I feel I’ll schedule it !

REPLY
ricki8 | @ricki8 | Jan 15 8:53am
In reply to @hopeful33250 "Hello @lindaamos, I just received a notification about a podcast about PRRT treatments that you might..." + (show)
@hopeful33250

Hello @lindaamos,

I just received a notification about a podcast about PRRT treatments that you might be interested in. It was presented today but here is a link to the recording:

https://www.lacnets.org/jan2024

Jump to this post

I just had my first shot of the PRRT at the same day/time of Dr. Strosberg's talk (how convenient) and my experience was quite different from sandy23's husband. I wonder if he had a stronger dose (mine was 20%). No side affects and I feel good. 4.5 hrs. in the hospital, 30 min. of the PRRT injection. We have to remember that each of us could experience the results differently. Good luck to all of us while dealing with this (not so rare anymore) cancer.

REPLY
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