Some of our friends and family have asked these questions. I figured I would share here for those of you who may want to know, but don’t want to ask… 😉
Can’t stress enough here that we are not doctors… un-f*cking-fortunately. We are just repeating what we’ve been told by our docs and other patients…
Will Paul need a colostomy bag after his bowel surgery?
NO! 😅 As long as all goes as planned with the bowel resection, he will not need one.
What’s the treatment?
Lanreotide. It’s a not-so-comfortable injection in his butt every 28 days, likely forever.
Will the treatment “cure” or “downgrade” his cancer?
No. This treatment is not going to cure his cancer or reverse the staging. Paul’s cancer is and will always be considered incurable / Stage 4. (Unless any new treatments become available in his lifetime… and there is always a chance! 🙏🏻) Even if he decides on radical surgical intervention, it is currently impossible to remove ALL of the cancer. So some of the metastasis will remain, as does the staging/diagnosis.
Well then what’s the point of the treatment?
SYMPTOM MANAGEMENT: To manage his symptoms — most notably flushing of his face/neck/chest, heart palpitations, itching and stomach upset.
DECREASE SEROTONIN: To decrease his serotonin levels, as well as other hormones that his tumors are secreting in dangerously high amounts. Currently his GI serotonin levels are 59 when they should be less than 8. His blood serotonin levels are 731 on a normal scale of 30-200. The elevated serotonin levels are not only likely the cause of the symptoms listed above, but they will also lead to heart complications if left untreated. (Heart complications due to excess serotonin are a relatively common occurrence with his specific type of tumors.)
SLOW THE PROGRESSION/SPREAD: To hopefully/maybe/kinda/sorta slow down the growth and prevent the cancer from spreading further, but it likely will not shrink or reduce his tumor burden with any significance.
What are the side effects?
The most notable side effects seem to be stomach upset, fatigue, dizziness and overall malaise. There’s a very long list of others, but from the many, many patients we’ve been following in the FB group, it seems those are the most common complaints. There have also been some patients who have had little-to-no side effects! So maybe Paul will get lucky. 🙏🏻🤞🏻
When does he start treatment?
Tomorrow (Friday, January 19) will be his first treatment.
Why can’t he get chemo or radiation?
These specific tumors (neuroendocrine tumors of the liver and GI) do not respond to chemo. This is both fortunate and unfortunate. On one hand, we are grateful that Paul will not need to go through traditional chemotherapy where he would have to sit in a room for hours/days and likely endure some intense and terrible side effects. On the other hand, if chemo could have been an option, that would also mean that a cure could have been an option.
When the hell are you gonna make a decision about the surgery?!
SOON. We are 100% going to schedule the the bowel resection — that is non-negotiable. But we have one more call (today/tomorrow) and one more appointment left (Monday Jan 22) to discuss the potential for liver surgery. The reason we cannot schedule the bowel resection just yet is because if Paul decides to go for the radical surgery including the liver, it can all be done during the same surgery. Once we have a decision about the liver stuff, we can schedule the bowel resection.
How did he get such an awesome wife?
I couldn't resist his frosted tips and 'running man' dance moves.
More questions?
We covered a lot more than this in previous posts, and they are there for you if you want to read them. If you have any other questions, feel free to post in comments here. I’ll add them to the “Part 2” post. Part 2 will include a info about what to expect from his surgery (surgeries?) and recoveries once we’ve decided on the surgical plan and have the relevant info.
Dayna 💛
IMPORTANT DISCLAIMER : We are not doctors. We are just normal, everyday people who are sharing what we’ve experienced, in hopes it might help someone else. Nothing in this blog, or anywhere on this website, should be substituted for professional medical advice. Perform your own fact-checks, make sure you do your own research, and consult with the best doctors you can find. It’s also INCREDIBLY important to note that no two NET Cancers are the same, and just because something did or did not happen to Paul, or does or does not work for Paul, doesn’t mean it will or will not work/happen the same way for someone else. Everyone is their own unique case, and every body responds differently to the cancer itself, as well as to the treatments. If you have a NET, please do NOT jump to conclusions based on Paul’s story. We’ve read many stories like Paul’s, but we’ve also read many miracle stories. We strongly encourage you to take this blog as an individual case study, and not as a prognosis for your own health.
Keeping good thoughts for you both. The humor with which you're handling this is so admirable.
Good luck. Prayers to you all and would love to see this "Running Man" move!
Paul & Dayna. Best of luck with the treatment. Here if you need anything.
P.S Looking like a member of the Backstreet Boys! 🤣