That’s one hell of a road trip. All I can say is the arbiterone/ prednisone got me under control< .01 quickly. Hope it works for you as well as the rear end shot. Bruce
Bruce,
Yes it's been a long road trip. Also I had two operations
1- for a drop foot i had spine surgery, which caused a hole in my lung. Luckily the lung healed itself.
2- fistula repaired. Colon and bladder joined. This caused air escaping from my penis. I called it a dick fart.
It's been wild the last 3 years
Bruce,
Yes it's been a long road trip. Also I had two operations
1- for a drop foot i had spine surgery, which caused a hole in my lung. Luckily the lung healed itself.
2- fistula repaired. Colon and bladder joined. This caused air escaping from my penis. I called it a dick fart.
It's been wild the last 3 years
You need to write an autobiography about yourself. Your Time hasnt come yet. My NP daughter says at the hospital: people that should be dead with all their maladies are not. Hospital personnel call them COCKROACHES. Lol
I too have stage 4, Gleason 9. Metastasized to hip,left leg bone spine and spots on rib bones. I have had your meds and chemo. I just finished my 6th treatment of Pluvicto. I'm taking daily Abiraterone and prednisone. Quarterly eligard, monthly zometa infusion for bones a daily pill for hot flashes and numerous supplements and vitamins. I found out in December 2020 and stated the treatments and fighting this cancer in 2021. I started out with my PSA at 1,834 and about 10 days ago it was down to 7.9
I will continue the fighting and treatments to be with my family
Best wishes to all of us "fighters" and survivors.
I too have stage 4, Gleason 9. Metastasized to hip,left leg bone spine and spots on rib bones. I have had your meds and chemo. I just finished my 6th treatment of Pluvicto. I'm taking daily Abiraterone and prednisone. Quarterly eligard, monthly zometa infusion for bones a daily pill for hot flashes and numerous supplements and vitamins. I found out in December 2020 and stated the treatments and fighting this cancer in 2021. I started out with my PSA at 1,834 and about 10 days ago it was down to 7.9
I will continue the fighting and treatments to be with my family
Best wishes to all of us "fighters" and survivors.
Mine is a high risk PCa, GS 8, Grade Group 4, rapid PSADT and PSAV, time to BCR after surgery.
As others have said, this is a "fortunate" time to be living with Advanced PCa given the exponential advances in imaging, treatment and most importantly, how the medical community thinks about managing advanced PCa.
Gone are the day of continuous, sequential and progressive monotherapy with single agents, each destined to fail with death following. Now, we combine treatments, bring them forward in the PCa and while the general school of thought is Advanced PCa is not "curable," it can be managed as a chronic disease for many, sadly, not for all.
This "wealth of choices", when to image, with what, doublet or triplet therapy, which ADT, which ARI, which type of radiation, PARP, Radioisotopes, Genomic tests...requires us to inform ourselves and have discussions with our medical team about treatment choices, what, when, for how long...
In those 10+ years, I've packed a lot of living - birthdays, anniversaries, skiing in Colorado, watching my daughters graduate from high school and college and go on to the next phases of their lives, vacations to Iceland, The Big 5 in Utah, Oregon, Glacier, Waterton and Banff National Parks...you get the idea. Next April we're planning a trip to Sedona, AZ with our daughters.
I will never forget the phone call from my urologist with the results of the biopsy, the shock, the "pity party..." Since then, I've picked myself up off the floor, informed myself, made decisions...
None of us are thrilled about treatment, each time I've started ADT and when I started chemo, I questioned myself, angry at what I was doing, knowing the side effects...for whatever reason, the radiation treatments (all 69) have not evoked the same feelings, perhaps because for me, zero side effects and a very short treatment window. Each of us make decisions from a plethora of choices while deciding on the balance between quantity, quality of life, treating too soon, too late, continuous or intermittent..,
So, there is "hope."
For friends, colleagues and acquaintances who now know better than to say "oh, you are lucky, isn't that a good cancer", a sharp response of, that's an oxymoron, say that to the 30k who die of it each year and if you want to get into the details of the side effects of treatment, how much time do you have to talk...!
I am not downplaying his PCa, 30k or so die each year of it, not with it. I have a friend who will soon join that group.
So, we are living in a world today where living with our Advanced PCa as a manageable "chronic" disease is more possible.
Two examples of hope:
1) I was diagnosed with stage four prostate cancer, Gleeson score 10, 4 cm tumor on my prostate, involvement of other areas in my pelvic region, and metastasis to my pelvic lymph nodes and lymph node in my chest. My Big Ten University doc would not offer me chemotherapy, stating it was not effective. My wife found Dr. Eugene Kwon, at Mayo clinic Rochester, Minnesota. He continued my Lupron, added chemotherapy through Minnesota Oncology and radiation through Mail clinic. I have been clear for 18 months.
2)I Became friends with another patient under Dr. Kwon. He had stage four PC with many bone metastases and a PSA of 3400. (Yes that is correct.) He Is currently clear also. He required additional treatment of chemotherapy with Lutecium. I highly recommend you check out the YouTube videos of Dr. Kwon. Just searc on his name and prostate cancer.
We are not patients with a rare outcome. Quite the contrary.
Connect
Connect
Like
Helpful
Hug
Bruce,
Yes it's been a long road trip. Also I had two operations
1- for a drop foot i had spine surgery, which caused a hole in my lung. Luckily the lung healed itself.
2- fistula repaired. Colon and bladder joined. This caused air escaping from my penis. I called it a dick fart.
It's been wild the last 3 years
-
Like -
Helpful -
Hug
1 ReactionYou need to write an autobiography about yourself. Your Time hasnt come yet. My NP daughter says at the hospital: people that should be dead with all their maladies are not. Hospital personnel call them COCKROACHES. Lol
-
Like -
Helpful -
Hug
2 ReactionsCheck with your doctor you only need to take Zomata once every three months. Getting it monthly is historical. .
What supplements are you taking? Did you need blood transfusions?
No, no blood transfusions
-Saw Palmetto
-Boron
-IP6 Gold
-Essiac
-12 Bitter Apricot kernels- 2 x dy
Misc vitamins
I have currently stopped because I need to go to the dentist. Which requires 3 months off if there's a possibility of bone being disturbed
Thank you. Have you stopped eating sugar?
Kevin, your posts are educational and inspiring Thanks
-
Like -
Helpful -
Hug
1 ReactionHonestly,
I will eat chocolate or candy bar now and then. As far as sugar, I use honey not sugar
Two examples of hope:
1) I was diagnosed with stage four prostate cancer, Gleeson score 10, 4 cm tumor on my prostate, involvement of other areas in my pelvic region, and metastasis to my pelvic lymph nodes and lymph node in my chest. My Big Ten University doc would not offer me chemotherapy, stating it was not effective. My wife found Dr. Eugene Kwon, at Mayo clinic Rochester, Minnesota. He continued my Lupron, added chemotherapy through Minnesota Oncology and radiation through Mail clinic. I have been clear for 18 months.
2)I Became friends with another patient under Dr. Kwon. He had stage four PC with many bone metastases and a PSA of 3400. (Yes that is correct.) He Is currently clear also. He required additional treatment of chemotherapy with Lutecium. I highly recommend you check out the YouTube videos of Dr. Kwon. Just searc on his name and prostate cancer.
We are not patients with a rare outcome. Quite the contrary.