Had a CT scan Monday, which showed progression of my neuroendocrine cancer in the lungs and the liver. I'll be meeting with Dr. Beltran at Dana Farber next week. Perhaps this is my chance to get into the famous DLL3 trial?
Bones are stable and PSA remains at 0.02 (Lupron only with an intact prostate). More details and how we're coping (or not) are in my latest blog post.
Good vibes your way Tom
Hi Tom,I have very limited knowledge when it comes to treatments, scans and such. One thing that I have repeatedly been told is that a CT scan doesn't show much if a man's PSA is under 4.0. How is it your scans show progression with such a low PSA? Thank you and and best wishes.
Neuroendocrine doesn't produce any PSA. It initially appeared when my PSA was <0.01
Please correct me if I’m wrong, you had intraductal cancer that morph into Neuroendocrine a year after ADT and you found it out by a new scanning although your psa was undetectable? May I ask what type of scan confirmed the Neuroendocrine activity?
You remember correctly! It was a plain CT scan that showed a large tumor in my bladder, a blocked ureter, and liver mets.
Wishing you good things in terms of future treatment options. I too am confused how your PSA is so low yet progression to lungs and liver. Does neuroendocrine disease express zero PSA?
Exactly, no PSA, but sometimes elevated Chromogranin A, which mine produces now but not initially .
Tom, I have an elevated chromogranin A for the past 9 months. What was your chromogranin A numbers were please? My MO told me that my cancer does not produce much psa but never mentioned the word neuroendocrin. Can you shed some lights on this please ? Best wishes always.
LearnAll had a good post on this... healthunlocked.com/advanced....
Great post - blog tom , you can nicely put into words the thoughts that many of us have but could never express as well. I hate to hear another warrior in this stage … you put it so succinctly …. and for me oddly cathartic. ( especially since I started off circling the drain ). It’s the chits simply put. Seems like a lot of that here lately…. too much.
Hopefully I haven’t triggered your Pollyanna button … so in typically stupid Kaliber style , I’ll go for some dumb laughs as requested ….
Doctor: I have some bad news, and some very bad news !!!! The lab called with your test results and said you have 24 hours to live !!!?
Me: OMG !!! , ….that’s terrible I said, then what’s the “ very bad news “ ?
Doctor: I’ve been trying to reach you since yesterday !!!! ( rat ta tat )
Did you hear about the guy that lost his whole left side ???
He’s all right now !!? ( ratt ta tat )
And I’ll break the joke rule and go for three …..
Wife: my husband swallowed an aspirin by mistake, what should I do ???
Doctor: give him another headache !!!! ( Ratt ta tat )
Hope this is a sufficient dose of numbing dumb for now big guy.
💪💪💪🌻🌼🌸🦋🌈❤️❤️❤️
No trigger, and thanks for the laugh. I thought the very bad news was going to be "doctor: you have alzheimers. patient: well at least I won't die in 24 hours"
Yayahahahaya
Doctor: your tests came back and you have Alzheimer’s , and a critical cardiac disease.
Me: well …. thank goodness I don’t have Alzheimer’s !!
😂😂😂😂😂❤️❤️❤️
My doctor told me it was perfectly normal to become aroused or even ejaculate during a prostate exam. That being said I wish he hadn’t!
Ewwwwwwww …. That’s nasty funny. Especially bad for one of us type guys …. him showing off like that and all …
😂😂😂😂😂😂
Thats when the doc has both hand on your shoulders😱
😂😂😂😳
Rotflol ….
He’s alright now!😂😂
🎼 it’s all right now !,. ( band called Free )
Love ya brother Scott, hope your weekend is “ groovy “ …
😂😂😂❤️❤️❤️
“It’s alright to have a good time yah it’s alright.” Salud !
Mannnnnnn …. Hit 111f here yesterday … it’s cooled off to108f here right now at 6 p.m. Saturday evening … only supposed to be a cooler 107f tomorrow yayahahahaya yayahahahaya. Gotta find some indoors things to do to have fun . Gonna take the trike out to the zoo again next Tuesday or Wednesday , supposed to drop down to a cool mid 90s yayahahahaya. Thanks to nearby mountains, morning temps here drop down to the low 60s ( cold air falls downhill overnight ) … if you get out early , it’s really nice outdoors … perfect for a great time 👍👍👍
Speaking of “ Salud “ buddy … I think I see some hornitos shooters ( with lime wedges and limon sea salt for back of hand ) coming around the corner if I can wake “ the hammer “ from her …… er …..ah …. 2 buck chuck nap yayahahahaya yayahahahaya
Salud my friend, I’ll be thinking about ya 😁😁😁❤️❤️❤️
Ye ol back of the hand. Corporal punishment! W had a five minute rain today. Temp dropped 20 degrees. A good day living on the dry forest edge . Stay cool and un triago por me. !❤️
I wouldn’t say it doesn’t rain much around here …. but …. about two months ago it rained a light mist for about 15 minutes ( and lucky we got that ) and little neighborhood children playing out in their yards pointed up in the sky and started crying and ran inside the house in a panic .. they didn’t know what was happening.
Just say’in 😂😂😂😂😂
FYI: This is heavy agricultural country and has tons of super fine AG dust suspended in the skies. When it first starts raining, it rains globs of brown mud for about 15 minutes before the rain clears the air.
Mama nature puts us in severe drought. The water table is being sucked dry . Almonds must be cut back.seeing how it takes 1.1 gallons to grow one almond. Just as bad is Pima cotton takes 800 gallons for one t shirt . Peace brother .
Maybe you can ask Dr. Beltran if a 177Lu-DOTATATE therapy could be done.
journals.lww.com/nuclearmed...
While I did ask for "no medical advice", I'll make an exception for links to quality sources of relevant information 
One of the authors of the article I cited is Prof. Baum who will probably treat you:
researchgate.net/profile/Ri...
psmainfo.org/news/137-dr-ba...
The 177Lu-DOTATATE therapy is FDA approved for gastroenteropancreatic neuroendocrine tumors but not for prostate cancer yet.
Als, perhaps, ask Dr. Beltran regarding APCEDEN?
I keep it in my pocket as one of the potential future treatments for my father. apacbiotech.com
ncbi.nlm.nih.gov/pmc/articl...
pubmed.ncbi.nlm.nih.gov/320...
Wishing you all the best!!
Tom, Sorry to hear about your poor scan and continuous low energy. Thank you for the post and blog update, you certainly speak from the heart and your brain is firing on all cylinders. I hope Dr. Beltran can devise a new treatment protocol for you and that you take time to enjoy the Boston area. There will be good walking opportunities in the city and certainly good bakeries and restaurants, like Regina Pizzeria. Maybe if you have time you can get on down to the Cape which is a nice place to stay and tour as well. Hoping you have treatment success and can get back to running this summer. Take good care!
I live 90 minutes from Boston so it's not a vacation for me, but a stress filled driver (or ride) over potholes roads that aren't laid out in a grid like normal cities, all with the famously obnoxious Boston drivers. 😜
I feel like flying there just for “ pizzeria Regina” 😋
Best of days Tom. I am a little at loss for words at the same time wishing I had some. Never good at remembering jokes and wish I had one now.
So sorry to hear of this turn of events, Tom. It is kind of you to share your thoughts and experiences with the rest of us. Praying for a helpful alternative therapy.
Yes, at my last meeting with Dr. Beltran she definitely looked for new developments in small cell lung cancer. There was a new treatment that had just been approved for lung cancer, but the response rates were similar to folfiri so we went with that instead. I'll have to ask her if she remembered what it was.
keytruda?
Probably not. I actually forgot the name. Gonna take notes this time!
Go Beltran!
I love your writing and wish you the best. Enjoy the Vermont woods.
Your eloquence with the written word is admirable. You say some of the things I think. I hate when someone tells someone who is facing a tremendous challenge, “You got this”. I want to smack them, too! It minimizes the problem, and doesn’t acknowledge the person’s difficulty. On the other hand, your wife sounds like she’s in tune with you. Our best wishes for the next phase of your treatment.
You've done a fantastic job on your analysis all the way through this journey. The latest thing that I noted is your conclusion that your body tells you how it is doing. I think this is true. Best wishes for a new course. I sincerely think something new will pop up.
Per your explicit, perfectly worded request, Tom, I wish you well and encourage you to whine whenever you need to. (I couldn't agree more with your well-expressed views about "You've got this," when "this" is a kind of cancer that is complicated, diabolical, and deadly. People really need to learn how to say: "I'm so sorry. That really sucks." )
No words...just crying, brother. - Joe M.
No apologies needed for the "long overdue update". Its great of you to share your story and insights. I hope you can get into the DLL3 trial. As an FYI, I ran into another man with the same kind of condition you have, and because you posted here, I knew the name " Dr Beltrans" and I passed that name onto him. His team now regulary consults with her. So you are helping others. Probably more than you will ever know.
I actually learned about Dr Beltran when somebody else asked who is the best NEPCa doctor in the US. Happy to pay forward all the help and support I've received.
I have followed your wonderfully written postings with interest, as your condition seems so similar to my husband's three year battle. His neuroendocrine liver mets first surfaced over a year ago. After failing multiple treatments, a 'license plate' trial, and not qualifying for PT-112 trial, and UCH trials dr suggested Lurbinectidin to his oncologist. It was approved for SCLC in 2020 but has been showing some promise against SC Prostate cancer and regular prostate cancer as well. It is a new molecular formula of an older drug. Prior to the start of Lurbinectidin, husband's PSA was the highest it's ever been at 53. Over the first two cycles of this new drug, his PSA has dropped to 37 and his Alkaline phosphate has dropped from 197 to 124. He has pain flares immediately following infusion, then about 12 good days, and then the pain starts to creep back before his next infusion. Scans are scheduled for June 23, and we'll find out if it's been effective on the liver mets as well as another mass on his C7-T1 juncture.
From a former New England native (Western Mass)
Another potential tool for the toolbox!
Hi Tom,
Thanks for writing your heart out.
What’s your ALP levels? I’m assuming as PSA remains stable, but ALP rises when neuro cancer progresses ?
I forget my exact ALP numbers, but they've been in the upper 60s, solidly in the normal range. I'm surprised my liver enzymes aren't higher with the growing tumors in the liver. ALP was through the roof, almost 1000, when I had extensive and active bone mets. Cancer in soft tissue generally doesn't raise ALP.
That sucks , I’m sorry Tom . I hope that you can find a way past this bitch of a pc . Good luck getting what you need. 🤞
Thank you for your always great writing. I was really hoping watching the 3 Stooges would help. Nyuk nyuk nyuk. Hoping for the best at your next appointment. My main question: where will you pahk the cah?
I'm a good setup guy.
Best wishes Tom and enjoy a good glass of whine if so inclined!
Just read through the posts and wish you well. I too find myself at the preverbal fork in the road. Meeting with Dr. Beltran August 4. for consult.
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