Spreading NET

Hello bnjncrew,
I'm also having severe edema in my legs and feet. I have also developed acities. My Net specialist doesn't feel its from the
tumors or PRRT treatment I had 3 months ago. The net specialist and my Oncologist are looking at possibly cardiac as the cause. I had Carcinoid Heart Disease and had two valves replaced 1 yr ago (severe regurgation tricuspid and pulmonary valves.) I just had an electrocardiogram. It looks like I could have some issues there. The Oncologist wasn't real
specific in his explanation. I have an appointment with the Cardiologist.
Good Luck with your
treatments !

I also forgot to mention he was on everolimus and his oncologist discontinued this and the swelling went down (he did still swell this week when flying but I guess that can be common when flying)

Its been 2 yrs. from net diagnosed,give you heads up never had embolization symptoms are worse and under hospice care

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.

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.

Funny story went to the hospital years ago and they never found anything other than an ulcer they attributed to my nausea. Last year it got to the point I was sick everyday went to a different hospital and on a scan they saw the tumors on my liver and did the biopsy on my pancreas to confirm where they were coming from. So my octreotides started last July and my embolizations started in December. Unless they are looking for pancreatic cancer they won’t find it since the symptoms are similar to other health issues. Be insistent if you aren’t feeling better and get those scans.

Funny story went to the hospital years ago and they never found anything other than an ulcer they attributed to my nausea. Last year it got to the point I was sick everyday went to a different hospital and on a scan they saw the tumors on my liver and did the biopsy on my pancreas to confirm where they were coming from. So my octreotides started last July and my embolizations started in December. Unless they are looking for pancreatic cancer they won’t find it since the symptoms are similar to other health issues. Be insistent if you aren’t feeling better and get those scans.