My Oncologist told me today that based on my latest PSA reading (0.01) and scan results, to hold off having my next Eligard shot next month to see what happens to my PSA level. Effectively active surveillance. It was music to my ears, he told me to go on vacation 👏👏👏👏.
12 months ago I went to the ER with urinary retention concerns and prescribed Tamsulosin. My initial PSA came in at 50. I then went in for a biopsy and cystoscopy on Christmas eve and the next morning, I was informed that I had stage IV PCa. It had invaded my bladder and closed off the urine flow from my left kidney, so I had a stent inserted to preserve the kidney and its flow. Later, the biopsy results revealed GS9 and the PSMA PET scan showed cancer was also in my pelvis.
I went straight on ADT (daily 50mg Casodex and 3 mth Eligard) commenced Chemotherapy (Docetaxel) in late Jan 20 and stopped taking Tamsulosin. I had 9 chemo shots but that wasn't enough, so I had a TURBT and 20 VMAT Radiation session to finish the job. Six weeks ago I had another cystoscopy where the Urologist determined the condition inside of my bladder was sufficiently treated, so he decided to remove the stent. This week I had a Renal scan which showed my kidneys were both working well and that result, combined with my low PSA, gave the Oncologist the confidence to take me off ADT.
When I was first DX with APCa at age 58, my world came crashing down. I've read on this forum many times that the first year is the hardest, and I belive that to be true. Today life is looking a lot better than it did a year ago. My wife has been amazing throughout this journey and we have become even closer because of it. I hope my PSA remains low for a long time so we can get out and about and live our lives again, cheers 🍻 😎DD.
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Doseydoe
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GREAT NEWS PAL. It is so good to see men who are able to take a break from our drug regime and have time to rebuild for the new round. LIVE LARGE MAN, Rock on
While you are on vacation from Lupron, I wouldn’t do nothing. I would suggest supplements that have anti angiogenesis as well as apoptosis properties. No side effects there.
That's outstanding, I was Diagnosed in May 2019 with Advanced (Stage IV) Gleason of 9 Prostate Cancer with Bone / Bone Marrow, Pulmonary and Lymph Mets. My PSA was 629 and since beginning ADT immediately upon diagnosis, (didn't even wait for Biopsy / Gleason results) it has dropped to 0.04. I'm also on XGEVA (Denosumab) to help prevent Bone & Spinal fractures as well as maintain safe Calcium Levels. During my first 10 months of treatment I felt like a New Person, but lately there's been significant bone and nerve pain, shortness of breath and fatigue. I'm not sure what the next step is, I'm hoping there's an immunotherapy that will come along . Until then, we keep on fighting. Good luck on your New Found Freedom.....too bad Travel is So Restricted right now.
That's correct. Jumped right to the Casodex then Lupron and Zytiga (Zytiga replaced the Casodex after 30 days). Using Xgeva for bone resorption, I was Osteoblastic, intensely over producing bone. I hope this lasts for a long time, I do NOT want Chemo. Downside I've gained 30 lbs in 18 months
That's amazing. I needed drastic action as the cancer was eating my bladder so I started chemo asap. I was at risk of loosing my kidney function and removal of my bladder. I was scared and suicidal at one point. Have you had any scans?
Urogram, Bone scan and ct of the chest. I've responded well to the Hormone therapy. The Bone pain, and neurological issues are problematic but the Therapy has halted the tumor growth and spread. I've lost feeling in my foot I have severe sciatica and my left hip (in the rotator / ball area) are really damaged, as the cancer spread and took up residency there as well as my spine , sternum, and rib cage. But I can walk again with tolerable pain. Hot Flashes and Bone Pain are a problem but they wash over rather quickly ad If I keep active, they happen less often
In the event that there is some form of recurrence, remember that you responded well and would likely see good results IF further treatment is ever needed down the road.
For now, celebrate the feeling of being able to be 'yourself' again.
It's like a new discovery once you allow it to sink in.
Thanks for your words of encouragement. Whiles it's welcome news hearing it from my Oncologist, I am tempered by the voices of experience that I read on this forum. Early January is when my next shot of Eligard is due and as I have been on Lupron for 12 months now, the next 6 to 12 months will be very telling. I am hopeful that my PSA will remain low and my T will begin to rise. It will be good to feel strong again. Time will tell so my fingers are crossed. 🤞
John, I am hopeful my T will rise and so will Mr Happy 😁. When it does, I want to show it to my bride and say, honey!!! She'll say what's wrong? and I'll say, nothing....... ain't it a beauty!! 👏👏👏
Wonderful news - both the Lupron vacation AND the stent removal! My Dad has had a stent for 4 years - changing every 6 months - and in August had 2 Double J’s inserted. He’s had a really nasty 2020 with this awful disease - most particularly with his Creatinine level jumping up to 3.9 several times requiring hospitalizations to get it under control. After 2.5 years of XTandi and then 6 months of Zytiga when his PSA climbed to 280, he now has 7 1/2-doses of Doxetaxel under his belt and his PSA has dropped to 80. We’re hoping to get his kidney/bladder challenge figured out so he can resume chemo and drop his PSA lower and shrink those bone suckers. Dad is 84, has multiple sclerosis, GS 9, and nearly 20 years into the battle but still mostly going strong - its a beast though for sure and frankly heartbreaking. Any advice for the kidney/bladder challenge would be greatly appreciated!
Here's a quick precis of what I learnt about my PCa when it migrated into my bladder. ADT and Docetaxel had little affect on the tumors in my bladder. Ialso discovered that PCa cells in a bladder can't be seen on a PSMA Pet scan. This is because the red dye, for want of a other word, is attracted to PCa cells and is eventually excreted out through the kidneys. So the whole of the inside of the bladder lights up red on the imaging. Effectively camouflaging the PCa cells, red on red so to speak. So to really find out what's going on in the bladder I needed to have a cystoscopy. Lastly, as the chemo didn't have much of an affect inside my bladder, I tried VMAT radiation therapy which had a better result, leading to removal of the stent. Hope this helps, all the best for your Dad, 😎 DD.
Thank you for detailing your experience Doseydoe and giving us the information for questions and possible treatment avenues. Up to recently it didn’t appear the cancer had entered his bladder or kidneys but it flirted with his rectum but that has “resolved” (don’t you love their descriptions?). I will ask about a repeat cystoscopy and pray they get some things figured out so he can resume treatment. Thank you again and also again VERY happy for you!
That's awesome news, so happy for your! Though I must disagree that the first year is the hardest. I won't say my first year was easy, but I had the tailwinds of improving blood test results, an improving bone scan, improving health, and diminishing pain. My second year was a horror show during a pandemic, but had some victories. My third year with cancer is off to a dreadful start, and I'm not confident I'll be around to see the Covid vaccine.
You and DarkEnergy are both living the dream I once dreamt. I can't stress how important it is for both of you to take full advantage of this time to allow your bodies and minds to heal after treatment.
Hi Tom, you have been a good sounding board and source of strength this year. We have similar issues and I pray for your health. I hope you find some success in your future treatments. You are right in your advice to be cautious, as I have the aggressive GS9 type. However for now, I am trying not to think of getting eaten alive. Here's wishing you and yours an abundant festive season, 🎄🎁👍 DD
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Oligometastatic PC and Radiation
Ureteral Stent / kidney not draining
PSMA PET scan
Blood in the urine
Clear PSMA scan.?
