Spreading NET

@harley4650 So sorry to hear about the progression. What about the newly approved histotripsy procedure for liver tumors? It uses high-intensity sound waves to destroy the tumors. Non-invasive. I don’t know all the hospitals offering it but I know on the west coast there are now two. One in Seattle and Providence Mission Hospital in Mission Viejo CA both have it now.

@harley4650 I found an article about the two west coast hospitals offering histotripsy -- second link. The first link is a mayo connect thread about it. I see one person on the thread said only 3 tumors max. Even if that is the case, tumor debulking is always part of the NET strategy. Not sure how often you could repeat the procedure. There is a contact number for each hospital. I hope this helps.

https://connect.mayoclinic.org/discussion/histotripsy/?pg=2
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https://blog.providence.org/blog/revolutionary-procedure-brings-new-hope-to-liver-cancer-patients-at-providence-providence-swedish

@harley4650 Sorry, the links somehow combined so I'll try again:

West coast hospitals with histotripsy

Mayo histotripsy thread

If the tumors are confined to the liver only, has your doctor suggested a liver directed therapy such as embolization? Radioembolization, chemoembolization or bland embolization?
These treatments work by cutting off the blood flow to the tumors. Typically they treat one lobe at a time so all the tumors are targeted in as little as two sessions. My husband had a 50% tumor burden in his liver and radioembolization killed almost al of them and kept the rest stable for 10 years.
Histotriosy is extremely new and they are just now starting to use it. My understanding is that they can only treat a couple at a time and they must be below a certain size and be accessible in order to be treated.
Are you seeing a net specialist?

@harley4650
My wife also only has NET in liver only as least that shows on all the scans. Our team is recommending a liver transplant. We had never heard of this as an option, so we are going to Mayo in Rochester and Dr Lui in Denver for a 2nd opinion. TBD. We already had surgery and 4 PRRT treatments.

How old is she?

As the doctors always say she is 59 years young. 🙏

I’ve gone through four embolization procedures on my liver and I’m down to my last one on Friday. The tumors grew very fast once they started giving me the octreotide injections. Surgery wasn’t an option and as they have already said they can really only do histotripsy on smaller ones (it’s more of a maintenance for tumors once you know you have them). My largest tumor was the size of a grapefruit and required 2 embolization procedures to start killing off. This procedure on Friday is to get rid of two smaller ones. Oncologist wants me to start chemo pills afterwards but that won’t be until after my next scan in May. In case you were wondering most of my main symptoms have severely lessened (nausea/diarhea/constipation/etc) after the fourth embolization and my continued octreotide injections. Because of the size of the tumors it really took a lot out of me after each one, and as I’m only 49 I rushed to get them done sooner. This last one I was in no rush to get them done and I let my body heal. I lost a good 40lbs and I’m starting to put it back on. Keep up your fight and make sure you are looking at all of your options.

My husband has G3 Stage 4 insulinoma, Primary in Pancreas and “Too many to count in liver- we are 2 years in may, octreotide for the two years also. Two embollizations, 5FU chemo, cap/Tem, Now PRRT 3rd treatment next week. He is doing well and we get scans this week to check. Today we go to the cancer cardiologist. We had a week in Florida with our sons families/grandbabies. He had some of the worst edema in his lower legs/ankles/feet I have ever seen. He increased his water pills for about 5 days and it helped. Could this have been from the increased activity or stress? He is still swollen in ankles so will discuss with cardiologist today. Wondering if anyone else gets the edema more with the PRRT? Just wondering what to expect with the next two treatments.

Hello @bnjncrew

I appreciate your update. I am sorry to hear of your husband's edema. I'm glad to hear that he will be seeing a cardiologist later today. Perhaps the doctor can answer your question about the PRRT and edema. Did he have edema prior to the PRRT?

I look forward to hearing from you again. Will you post an update after your appointment?