Diagnosed with Stage 4 pNET: What should I know?

Kim mentioned she was on Hydromorphone for pain, since she didn’t want the stronger meds. Discuss options with your team, don’t be afraid to be a strong patient in terms of informing them what you need.

Thank you and congratulations on living with this monster. I am USUALLY an upbeat optimistic person so feeling like this is so hard to get use to. I guess our friends don't know what to say so they just avoid us. Out of site out of mind, our son just started his own company doing pest control after 8 yrs with a well known company that was bought out and changed where the customer satisfaction was 2nd to the almighty $. He tries to help as much as he can but with the challenge of trying to make his new business work and basically taking care of all his young families needs from cooking to cleaning and laundry while his wife works too. He has so little time. It is nice that sometimes his jobs bring him out here a few times a week where he "visits" his dad but I feel guilty that I have to work to keep up with everything and fight workers comp, be my husband's advocate and deal the the hard stuff. He has too numerous to count tumors in his liver and what is left of his pancreas is fully evolved and I now suspect it has traveled to his brain. 7 months ago he was sharp as a tack but has become altered and has trouble with simple math and often messes up the check book. Than God I have the mobile banking app and keep track of things. He too takes the octreotide and has had mixed results. While it is helping some, it also causes him to constantly move his bowels, sometimes not even finishing a meal 1st, and that's with 2 different medications to prevent that issue. I pray to God so often I think sometimes He says, oh no, not you again, lol. I would be more optimistic if I saw a slight improvement but so far it seems to be a rapid decline. While I only spend about 4 waking hours with him 5 days a week, the 2 that I am off I try to make the best of. Sometimes he is chatty and more like his normal pre cancer self, but most times he prefers to sit and watch t.v. quietly or sit outside which is hard for me with the heat. As a heart patient the heat and humidity do me in quickly so I spend maybe 15 mins while he spends hours. I thank God every day for what time He gives me with my husband and the fact that my husband has our sweet furbaby who is also my service dog to keep him company and somewhat active. We have sought what little help is available in our area but he refuses to go to Jax, even for the special PET scan.

I will not give up on him. I wish the chemo pill were an option but he has no spleen and bot red and white blood cell counts are way too low. We were told that there is a rare chance he could develop blood cancer if it dropped too low. Given all the rare things (none of them good) between his health and mine, he felt that was not a risk he was willing to take. He is 76 and stubborn but I think being stubborn is the only reason he is even trying to fight at this point.

Thankfully he doesn't seem to be in pain just loosing weight rapidly. I try to make meals to give him nutrition but that isn't enough and he won't drink ensure so cooking big meals that last him all week is my o ly option.

Hello again @talkativeinfl

Since you've joined Connect, I've read many of your posts and I sense the stress that you are experiencing. You want to do what is best for your husband, and because of his unwillingness to try these suggestions, it may feel to you like your hands are tied. It seems that he is content to just let nature takes its course. Am I understanding your situation correctly?

As it has been suggested in another post, please know that when the stress of caregiving becomes too much for you to bear alone, that you can call in hospice, (with a doctor's script) and simply explain to your husband that caring for him is more than you can do alone and that you need some help from outside sources. It is important that you take care of yourself.

Be assured that your husband, despite his seemingly indifference to your suggestions for the help, is probably very appreciative of your concerns and you wanting to help him.

I was diagnosed 5 yrs ago. It has metasticised to my liver and bones and spine/ ribcage and is inoperable. My chemo has stopped from growing. I struggle constantly with pain and am on morphin but i can still finction in short intervals. I am 60 yrs old . I. Had a procedure called y90 done on my liver and it killed the largest tumor but i was very sick for 6 weels. I try to remain hopeful but its not easy

Hi Charlie, to help you connect easily with others like you, I moved your message about metastatic neuendocrine pancreatic cancer to this existing discussion in the Neuroendocrine Tumor (NETs) support group:
- Diagnosed with Stage 4 pNET: What should I know? https://connect.mayoclinic.org/discussion/my-husband-was-diagnosed-with-stage-4-pnet-in-sept-what-should-i-know/

Is Y-90 (radioembolization) being considered for you again? What treatment options are being proposed?

Kim1965,
I was very interesting to read about your wife’s case. Sounds very similar to mine but she achieved a reduction in her tumors far in excess of what my oncologist told me to expect. I have a 3 cm. pNET on the tail of my pancreas and metastases to my liver too numerous to count. My Ki-67 score was 9 which puts me in grade 2. Can you tell me your wife’s Ku-67 score?

I received my diagnosis and treatment plan at Mayo clinic in Rochester MN. I’m getting lanreotide injections at University of Michigan cancer center so I don’t have to travel to Rochester. I’m scheduled for my fourth injection in one week.

Can you please tell me what is “CAP/TEM.” Is this something in addition to the lanreotide? My MAYO oncologist told me not to expect any major reduction in tumors such as your wife’s 80% reduction. He told me it was only reasonable to hope that it would slow the progression of my NETs. Also, can you please tell me what you meant by the term “a mtn. function”?
Thanks very much.

We are a year and half into our journey in living with NET. I can’t remember our Ki- score, but believe it was a grade 1. CAP/TEM was prescribed immediately along with Lanreotide injections, and after 6 months, she had 50% reduction, and feeling was the doctors were surprised those results were so positive, as everyone has different results. But CAP/TEM is the one of the better options, that helped us get control of my wife’s NET. The original plan was only to do 6 months as your body tends to not get much reduction after 4 months on it. So we continued another 3 months and achieved close to 80% reduction on mass on pancreas and tumors on liver were reduced to where she had about 20 tumors on both lobes of liver. This progress allowed for surgery in March 23, to remove pancreas mass, spleen, gall bladder, and debulk as many tumors as they could get. There is still some remaining NET in her liver. Our team’s plan is while it is in a the smallest amount, to do 4 PRRT treatments to knock it down even further. Back to your question on a Mtn. Function. Our team has mentioned that we have knocked the NET down significantly with the treatments and surgery, but since it is not curable, but going forward other options to keep it down are available, along with if we only have it in her liver, the team is educating us on a possible liver transplant if needed in 2-3 years depending on how the PRRT treatments work. I hope this helps you, I would ask your team if/when CAP/ TEM will be considered. Let us know what other questions you may have, we are all in on beating NET together. We got this! 👍

Thanks for the prompt reply kim1965. I appreciate the additional information and will definitely discuss with my care team the possible use of CAP/TEM. I still did not understand what the term meant and interestingly the NIH Dictionary of Cancer Terms showed "no result" for "CAP/TEM." But with a bit more searching I now understand this is short for "capecitabine and temozolomide" and I was able to find a clinical study applying this therapy with good results to patients with NETs that had metastasized to the liver. Can you tell me, what does the term "Mtn. Function" mean? As you can tell I'm still not familiar with all the terminology related to NETs. Thanks again for your help!
Tom