DX 4 1/2 years ago. Been on Lupron and Deraludimide for 4 1/2 years.
PSA has risen from .014 to .037 in 4 months. 4 consecutive rises. I test every 30 days.
I had bone mets and lymph node involvement.
Any thoughts on next treatment? Try Xandi? Move to Pluvicto?
Help i have 3 young kids.
"I test every 30 days." I can see why you are anxious, but I think that your testing schedule serves no other purpose than to add to your anxiety.
"PSA has risen from .014 to .037 in 4 months. " It is still negligible. There is no change to be made in your therapy until PSA reaches at least 2.0. There is no point in using an ultrasensitive PSA test - like your monthly testing, the only result is to increase your anxiety still further.
"gotta endxiety"
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 09/28/2023 7:21 PM DST
This is the type of scenario where Dr. Kwon advocates for extreme vigilance. The criteria of a 2.0 for PSA before a PSMA PET/CT is coming into question as more and more patients are being found who are discordant and have positive scans with PSA lower than the insurance threshold of 2.0. Its always the shoulder of the bell shaped curves that insurance wished to exclude as this allows cost containment. This recent abstract showed 17% discordance which is not insignificant. If you want to spend the money and talk to Nat Lenzo in Australia, who is very knowledgeable on this topic, I would advocate it is a cheap investment particularly compared to health care costs in the USA.
I can empathize with you I was dx with bone Mets and lymph node involvement at the age of 54 with 3 high school/ age kids college, that was almost 10 years ago. I always got a monthly ultra sensitive PSA test per my MO who was Snuffy Myers at the time. I still get one every 6 weeks. It doesn’t make me anxious, I’d rather know when things change so I can plan a course of action. I took aggressive action early per Snuffy Myers. You can look at my profile to see what I’ve done over the years. I definitely wouldn’t wait until your PSA reaches 2.0 to discuss adding an additional treatment.
Be sure you are seeing a MO who specializes in prostate cancer and not just a general oncologist even if it means travel. My current MO is doctor Sartor now that Snuffy retired. He coordinates with my local MO. I’m going on 10 years with a Stage 4, Gleason 9 dx and still fighting the fight. Good docs, aggressive approach and lots of prayers, God works miracles, you got this.
Ed
Thx Ed. You and I havent spoken before and I appreciate you reaching out. I think you also saw Datolli in Fla.
How is your PSA? What meds are you on?
I see my MO on Monday. She specializes in PCa. Keep u posted.
No I never saw Datolli. Latest PSA is 0.24, I’m having another PSMA scan on Thursday. Hopefully just another spot that I can hit with SBRT and keep kicking the can. I’m still on the Snuffy protocol - Enzi, Lupron and dutasteride (Avodart). Plus Metformin 2000mg daily. Estradiol patches for hot flashes and bone health and perhaps some effectiveness against PCa. Snuffy’s multidimensional approach. Sartor hasn’t told me to change a thing. I also take vitamin D, Iron and Fisetin. Iron is for anemia I developed likely due to ADT, I monitor iron levels periodically to make sure they stay in normal range. Sartor has no problem with these but warned me to avoid B12 and vitamin E, he said prostate cancer loves them.
Lots of prayers asking for Gods healing hands, he works miracles.
Ed
Are you testing your vitamin B12 and Folate levels? My vitamin B12 moved out of range after I used like you 2000 mg of Metformin per day. Now I am down to 500mg per day of Metformin per day.
I believe Metformin use could potentially under certain circumstances lower your glomerular filtration rate. That is why I usually stop Metformin if I have to do some nuclear medicine scans like PSMA pet scan or just a CT with contrast or an MRI with contrast.
What other treatments have you had? Every case is unique, so it's difficult to provide suggestions without knowing a lot more about your history. Best thing you can do is make sure you have at least one medical oncologist on your team who has had 1000 or more prostate cancer patients.
Hi Ron
My MO is a prostate cancer specialist
I ve been on Lupron and duraludimide for 4 1/2 years
No chemo
Well been on Lupron for seven years now. Hot flashes, etc you sort now get used to. I’m on hormone therapy with the generic of Zytiga. My psa when upp to 2 from around zero so I increased my daily dose to six rather than four pills a day and my psa went back down to around zero. Lupron in the beginning I got one shot a month now it’s once every three months. What kind of therapy are you on? My original diagnosis and still is stage four and terminal because of Mets to the bones a nd lymp nodes. I was, according to RWJ HAVE DIED AROUND FOUR YEARS AGO. IM VERY STRICT WIYPTH MY DIET AND A true believer in intermittent fasting Ben doing that before it became the new thing, guess about three maybe four years ago. I believe you can starve cancer to an extent doing this. As far as Lupron what is your question. I just turned 74. You never get used to cancer it robs you of everything you just have to adapt. Ok lmk what you want to know about Lupron. Good night my friend
I’m sorry for your anxiety…..the waiting is one of the absolute hardest parts. My husband’s doctors at Cleveland Clinic and Mayo scan him when his psa is over 0.1. While some say that’s too way low, we have found lesions every single time it reaches 0.1 and trust he team based on my husband’s variant. He has had axumen, choline, and psma since his diagnosis almost 5 years ago. Given his young age and aggressive cancer (Gleason 4+5), the doctors all agree that psa is only a tool, as are scans. They feel it is best to monitor bloodwork AND scan. Our team has never waited to even 1.0 to scan, and my husband has had bone and lymph nodes Mets in the pelvic area. We’ve biopsied his cancer twice and there are no neuroendocrine features. Every cancer is different and his show lesions with very low psa, as do other men. Our team has recommended bloodwork every 3 months to keep anxiety down, noting that there are often small variations that can be meaningless.
That being said, my husband hasn’t missed work except for appointments/treatments, continues to travel and enjoy life. He is now almost 58. Since diagnosis we’ve gained 2 more daughter-in-laws and 3 more grandchildren, plus saw our youngest son graduate. Our approach is find the cancer and kill it while it is small, so he can continue to enjoy life. He’s had surgery, salvage radiation, sbrtx3, cryo, and of course adt +/- earleada or Nubeqa. He’s had multiple durable remissions where he was off all meds for up to 1.5 years. While some call the early, aggressive treatments “whack-a-mole”, our team calls it disease management.
I understand your fear as you have young kids and will praying and wishing you the best. I hope you find some encouragement that my husband continues to do very well after finding the first met 4 years ago (after having sx and radiation in 2018). Take care and keep us posted.
Thank u for reaching out. I will fight hard and will do everything I can to see my kids grow up happy and healthy
They mean the world to me 🥲
I’m sure you will! Your kids are lucky to have you. Hang in there!
XOXOX
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