Learning more and more about other people’s journeys gives me a sense of hope that everything will be okay after all.
When were you guys diagnosed and with what stage? What is the biggest/most important thing you have learned in your journey? And what advice would you give to the newly diagnosed patients and their families?
I think my advice would be to cherish every moment with your loved ones and never take anything for granted.
Dxed in May. Scans all showed contained. Robotic assisted RP in June, spread and no clear borders. First 20 min. of surgery took more than an hour. Dr. kept going getting what he could instead of backing out. PSA going in 53. At 6 week check-up up to 63 instead of dropping, Gleason 9/10. Dr. told me maybe 12 mo. to 18mo. max. Started Lupron and onc. started taxatere after new scans showed both lymph nodes and bone mets. After 5 cycles and PSA stated to rise. Added Xtandi. Went 9 cycles and stopped acct horrible side effects. Continued just Xtandi. Had bilateral orchidectomy to get off Lupron for life. Xtandi continued it make me sicker until I was a complete invalid...my wife and I then decided to cut back on meds as I had no life worth living. Settled at 80 mg. (1/2 dose) and recovered enough to return to work with help from those I worked with. 4 more months and retired.
Drs. were full of BS. Pushed PSA to 0.12/0.13 and in remission. Last scans were clear for first time and PSA dropped for first time in 18 mo.
Advice #1--don't believe Drs. estimation of life expectancy.
#2--Keep family close
#3-- Stage 4 with mets is not the end. You can beat it..
#4-- Some of the treatments suck, but they can beat the beast back.
That’s great! How did psa drop to 0.12/0.13? WeRe you on enzalutamide? What meds are you on now?
Dropped 25% per cycle, then up before #5 where it rose. Added Xtandi and continued 25% drop per cycle through #9. Then slowly on just Xtandi till the 0.13 reading where it stabilized with 0.12 and 0.13 readings for 18 mo. Latest 0.008. Long time coming, but worth the wait for clear scans and undetectable (by most standards) three years in to fight.
Now on 1/2 dose Xtandi, OTC pain relievers and cyclobenzaprine acct old injury, gabapentin for peripheral neuropathy in hands and feet, Clonazapam to help me sleep, and atorvastatin..
No Dr should be giving a life expectancy at all. Those are based on data previous to current meds and treatments. 💙
Agreed!
The greatest lesson I learnt is to know as much as possible about PCa from authentic sources (not webMD types) but real research articles.
Do Not believe the Onc Industrial complex sales agents when they tell you right plantbased, anti inflmmatory diet ,excercise and herbs/spices DO Not work. They are BS...ing !
Get your body weight to ideal body weight with BMI close to 22. Consider Metformin/ Berberine, Statin (atorvastatin) etc. Add deep breathing and Yoga tecniques because cancer cells do not thrive in well oxygenated blood.
An all round attack on cancer cells with standard medical treatment along with Complementary treatments (some mentioned above) is your best bet on long term survival.
#1 ..Friday the 13th March 2015..stage #4,gl.4+4.. #2. Love and compassion heal us. #3. I like your last paragraph as the answer.
#stageivpca diagnosis in 01/2015 with PSA at 840.2, GL7, mets to L side ureter lymph nodes. 30 months ADT, 15 taxotere chemos and had a nadir of 0.1 in Summer 2017.
Get 2nd opinions, get on a great, informative site like this one. Go low carb, lean protein, plant based diet, do cardio/weights to offset meds side effects. #bekind
and Carpe dang Diem and Fight On
My best advise is the same advise I give for all aspects of my life. Question your experts! Lawyers, doctors engineers etc. Become knowledgeable about your disease and understand the options so you can question your MO. This site is a great place to start that.
Schwah
And be as proactive as possible. Do your research. Know your options. Challenge your doctors. Stay strong.
Definitely cherish every moment and take nothing for granted, regardless of current health status.
My story started in October 2018, with stage 4 PCa metastasized to bones and a bonus, unrelated, bladder tumor. Got to undetectable PSA and ran a half marathon to celebrate a year of survival.
Started thinking about running a full marathon in 2020, but a month ago I was diagnosed with neuroendocrine PCa, metastasized to liver, which my MO believes developed alongside the original cancer, and I tend to agree because it's wicked early for it to be treatment emergent.
I'm still planning to run that full marathon, but probably in 2021 now. Not sure if that's inspiring or just insane. All I know is that my MO has high hopes for a new drug I'm on and hasn't taken any possibilities off the table. He said the drug is too new to know how long it could be effective for, and he had a lung cancer patient achieve complete remission (nothing on scan) on it.
See my profile by clicking on my photo. All I can say is get good doctors and treat it aggressively.
Diagnosed 27 years ago, stage 4, Gleason 9, PSA 39. What I would say to the newly diagnosed is think of your cancer as a wake up call. Stop going through life half asleep. Appreciate each day.
I an a believer in monotherapy, and a vegetarian diet. Keep up your vitamin D3 level and drink lots of green tea.
Don't share your chocolate...
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 02/14/2020 11:04 PM EST
As a wife I thought it was over poured my heart to these guys They helped me so much
Husband is on lupron & Zytiga almost a yr now
Psa is 2 no bone Mets. Tiny lymph nodes
Med doesn’t bother him
We just live life and I try not to think about it
Husband said I just gave it to God I’m grateful for every day and every day
Oops also prednisone too
Just remember no one knows how long they have on this earth you may have a diagnosis but that’s all it is I’ve had friends They have died from a heart attack so my thought is now I’m just going to enjoy life with my husband and that damn C is not going to ruin my thoughts
Hmm... OK, please read my 1st post (after the facts, it does have a happy ending.)
"To those newly diagnosed"
westof•
8 months ago•52 Replies
"Hi all, first post and here is my story…
2 years ago my PSA started creeping up. Met with my urologist and decided to try a liquid biopsy (Exosome) and my scores were encouraging. On a scale of 0 to 100, mine was 22 ( with a cutoff of 15.6 ) and I thought I was stable.
However, as time went on, that reassurance was short lived. My PSA started to double at an alarming rate, until it reached 28 the following year. After doing tons of research, I decided to opt for a MRI Fusion biopsy . My Insurance wouldn't cover it, however, I negotiated a “contracted rate” of $1400 (down from the standard rate of $2500) with AD RAD. Worth EVERY penny!
Results: Gleason 9, stage 3. I was referred to a local hospital oncologist and after doing a bone scan (negative), he suggested a treatment of 45 days of EBT. I had studied other similar cases (especially Rudy Giuliani, who was diagnosed in 2000 and opted for ADT, HDR Brachytherapy and EBT) and came to the conclusion that 45 days was not the treatment I needed.
Next stop, Memorial Sloan Kettering! Met with Dr. S and he agreed that I needed the 3 types of treatment. Also did a CAP CT scan to see if other organs were clean (also negative,whew!)
So far I’ve had ADT (Casodex with Lupron and now Lupron with Zytiga, with a side of predisone). Brachytherapy (April 26th) and have completed 10 days (of 25) of EBT. Bottom line, no side effects and I feel great.
I’m writing this to those who have been newly diagnosed. Don’t panic, find the best Doc’s and follow the program religiously.
Here is my motto: “I refuse to live the rest of my life in a constant state of anxiety, nor will I allow myself to be entombed in a cocoon of dread”.
So, here is the happy ending...
Last week I met with met with my MSK Docs and they officially proclaimed that I am now cancer free!
I'm still feeling a sense of stunned disbelief and out of habit, I'm still waiting for the other shoe to drop!
When I was first diagnosed, my first thought was, "it is what it is".
But now, I'm starting to realize, "it was what it was".
Best,
AJ
Dx 12/2019
76 years old
Aggressive Gleason 10
PSA 13.1
Scans show contained
My brother has been dealing with PCa for the past 10 plus years. When dx I counted on his guidance
The one thing I learned is. You are either the hammer or the nail
I choose to be the hammer and take charge of my care
Currently in Europe beginning my journey. Had marker implants done today. CAT scan tomorrow to confirm and sync markers treatments begin next week. 7 as opposed to 40 in states
To review it
Dx 12/19. Urologist scheduled therapy meeting end of Jan As the Hammer I had met with oncologist
, radiologist, Venice counselor, MRI, CAT scan and bone scan therapy plan and first injection of
Lupron. Then told would have to wait until April or May for treatments
Returned to Europe. Brought copies of my medical records scheduled appoint. Took three weeks but then things went fast
Monday delivered medical records along with copies of MRI, CAT scan and bone scan
Wednesday met with
Oncologist
A week Thursday
, today, had marker implants. CAT scan tomorrow with treatments expected next week
Be the Hammer and take control
Good Luck
Curious what you think?
Diagnosed under 55
Question about bicalutamide
First post about my dad
Message for all new members
