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.

ginnyos | @ginnyos | Feb 21 1:13pm

So glad that you were able to complete the treatments. My spouse had one treatment as you described and got sepsis 3 days later. The Oncologists "think" it was caused by the "melting" of the tumor material. Needless to say they stopped the treatments.
I do want to stress it's what the Oncologists think might have caused the sepsis. This occurred several months ago and they are still not positive that is what caused the sepsis.

Colleen Young, Connect Director | @colleenyoung | Feb 15 11:53am

In reply to @sandy23 "Hoping not to sound like an idiot but what is Cap/Tem??" + (show)

Good question, Sandy.
CAPTEM is the acronym for the chemotherapy combination with drugs called CAPecitabine and TEMozolomide.

kim1965 | @kim1965 | Feb 15 7:59am

In reply to @sandy23 "Hoping not to sound like an idiot but what is Cap/Tem??" + (show)

Cap/Tem is a chemo based pill that is typically used as a first course of treatment upon diagnosis of NET’s. It was generally tolerated ok, better than what I have heard from other intravenous forms of cancer. It has been very effective in most cases, but your team will make that decision depending on what’s best in your case. Hope that helps?

sandy23 | @sandy23 | Feb 15 7:43am

In reply to @kc43 "I was surprised to find out from my net specialist that his patients don’t use the..." + (show)

Hoping not to sound like an idiot but what is Cap/Tem??

KC | @kc43 | Feb 14 2:50pm

In reply to @colleenyoung "@kc43, the liver is an amazing organ. I'm glad to hear that it has recovered 70%..." + (show)

I was surprised to find out from my net specialist that his patients don’t use the Cap/Tem chemo for longer than two years due to bone marrow issues that occur with long-term use. I’m wanting to know what others have tried once the tumors start growing again.

Colleen Young, Connect Director | @colleenyoung | Feb 10 2:34pm

In reply to @kc43 "When will you know if the treatment was successful ? I have pancreatic with mets to..." + (show)

@kc43, the liver is an amazing organ. I'm glad to hear that it has recovered 70% of its former self. It sounds like your doctor is monitoring your health closely and that stopping chemo, at least for a period of time, is advisable. Are you comfortable with that decision? Have you stopped yet? How are you doing?

ricki8 | @ricki8 | Feb 5 10:50am

Hi Phyllis, I'm sorry you had to go through all this. As we all have different experiences and reactions, it's important to hear what others go through so we can engage better with our doctors. I will ask the person who was injecting my PRRT dose why he mentioned 20% (perhaps that was pressure). There is much to know about all that is happening to and around us. The best thing is that discoveries are frequent as they now know that NETs is not a rare cancer. More $ are now being put into treatment. We are lucky to have not gotten this years ago. Steve Jobs & many more. Wishing you well.

phyllisden | @phyllisden | Feb 4 10:49pm

In reply to @ricki8 "I just had my first shot of the PRRT at the same day/time of Dr. Strosberg's..." + (show)

ricki8, I haven't been part of this conversation, but decided to join tonight. I went to Mayo in Phoenix in April 2021 to have the PRRT treatment. I'd had a blockage in my small intestine in March 2018, when they finally (after 11 years) found the carcinoid tumors. I lost 10" of those intestines. Then in July 2019 I had a blockage in my large intestines and lost 11" of those. So in March 2020 I went for a consult at Mayo. And yes, the pandemic hit so I didn't go back for treatment until April 2021. At that time they determined the tumors deemed "unresectable" (like the 2 cm one in my stomach) had grown slightly.
Anyway, after my first full dosage treatment I had some severe and unheard of side effects. So for the next three, they cut the dosage in half. I still had issues with nausea (but taking 8 MG of Zofran and .5 of Ativan pretty well fixed that.) I took quite a bit of Imodium and had fatigue for awhile, but otherwise was OK. Did your doctor say why they only gave you 20% of the usual dosage?
I completed treatment in Oct. 2021, continue with my 30 MG Octreotide shots every 28 days, and have had 4 scans since (last one was 1/5) - all with "stable" results. So between the scans and labs, the tumors are "non-functioning". I'll take that! I'm on no special diet, just eat what I want and what agrees with me.
I hope you get what you need to stop the tumors from growing. And that you'll be able to move on in your life. I do believe it's a chronic disease you manage, like any other chronic disease.
Good luck and keep a positive attitude - it really helps.

KC | @kc43 | Feb 1 6:10pm

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.

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When will you know if the treatment was successful ?
I have pancreatic with mets to liver. 2019 I started lanreotide injections, capcitabine and temozolomide chemo pills. 2019 my liver was very compromised with so many tumors & now I have 70% or more healthy liver . My Dr is now wanting me to stop the chemo due to bone marrow issues associated with long term use and is proposing to stay on Lanreotide for as long as it works with scans every 3 months to monitor. If the tumors start to increase significantly then he wants to start the lutathera treatment.