I am now 26 months post chemo and 32 months post the warning "get your affairs together". Despite a left lung that is filled with tumors, I can still fish sitting in a boat with a guide. My grandson, a novice fisherman is learning and is willing to drive. No masks needed on the Arkansas River-plenty of fresh air.
I feel guilty about the cost of my Xtandi, $10,000 per month but the months have been good ones despite Covid restricitions.
Whimpy-p inspired my post.
spectacular --- you might consider seeing Dr. Kwon -- he will take out those tumors and it may get you 10 more years .
No need to feel guilty..you have no control over the system....enjoy each day and savor moments with your grandson and family...they will also treasure those times!!!!....that looks like Billy Bass the singing fish!!!....You cant fool us😀
Great to hear! If I remember correctly, you also have neuroendocrine cancer as well. It's nice to hear that the cancer has stayed away for at least one person.
You are right. The chemo stopped the neuroendocrine cell line from further growth and Xtandi appears to be holding the adenocarcinoma cells for now. PSA’s about 2.3 with slow creep up but not dramatic. I am very grateful.
As far as I'm aware, you're the record holder for NEPCa remission (or stable disease if you prefer). 4 months after I finished my chemo it looks like both flavors of cancer are progressing, and that's after the liver mets disappeared entirely one month after chemo. Bugger!
Tom, did they do tumor genetics on your biopsy? Mine was done at Foundation One and my next drug will be Olaparib ( Lynparza) based on my tumor genetics. My oncologist remains obviously amazed at what happened and I think I see a case report coming from him.
I have some chest pain with certain motions so I wonder when the shoe will drop. I live in Denver so I am pretty aware when I go to high altitude but okay if I am not too active. Gave away my snowshoes and probably should do the same with skis. I keep thinking “maybe just once...” but not happening. My bike is also gathering dust. Helping a 12 year old grandson with 5th grade science I can still do with a mask on .
They did do genetic testing of my biopsy, but I also heard they ran out of tissue before they could do all the tests. Nothing actionable was found, and I'd assume genes like BRCA were at the top of the list to test.
I do have a mutation of unknown significance in my BRIP1 gene based on germline testing. This is the gene that controls BRCA1, and some specific mutations can be very bad. Amusingly, the report noted that my version of the gene is considered normal for Atlantic cod.
Hi Tom Has anyone suggested to you the possibility of treatment with lutetium-177-DOTA-octreotate? It's specifically for treatment of NE tumours. See the link below.
genesiscare.com/au/treatmen...
Have you been able to see Dr Beltran yet? Stay strong.
G&J
Fantastic. Nothing better than being on a river with a fly rod. Congrats and enjoy.
Salt water and a beach or boat for me but a lake or river is a close second as long as I have a fishing rod in hand.
One more cast...
Ed
True. Any type of time spent on or around water is a gift.
That fish looks like he can use a couple of dental implants....
Keep hooking......
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 10/05/2020 6:31 PM DST
How fast does psa fall after loadin dose of firmagon
Sural nerve grafting
PSA doubled 3 months after chemo - normal or a concern?
father psa 7 right after surgery
Surprising tE2 (transdermal estradiol) results...fifth update
