Any success stories ? I am sure there are LOTS let’s kick this conversation up a few notches !
HAPPY FATHERS DAY
TOO DEPRESSING - SUCCESS STORIES? - Advanced Prostate...
TOO DEPRESSING - SUCCESS STORIES?
Written by
mine1958
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62 Replies
•
Great best of luck ! Stay strong NEVER GIVE UP
I look at my Pca as a gift. Before my diagnosis I was going through life on autopilot, just going through the motions. Pca was my wake up call. Now I appreciate each day for the last 27 years.
THATS WHAT I AM TALKING ABOUT !!! 
When I was first diagnosed almost 13 years ago. I read Lance Armstrong's book, how he over came his cancer challenge. I'll never forget one line.
There is the before cancer and the after cancer person.
I agree with your comment Magnus. Appreciation and perspective on life is different once one has faced reality.
Same here it really brought things into focus for me. Helped me become the man I always wanted to be.
Two years ago, a urologist said I had a year,(gleason 8 ) went to Mayo and had surgery and everything came back that it hadn't spread with the pathology report. 3 months later .4 and said it was aggressive and was to go to radiation. A nurse suggested Dr. Kwon instead and we went with 4 of types of scans for over a year until he found it in both lungs. PSA went to 2.1 Started Firmagon and Docetaxel was finished in March. It went to .01 in Feb. and has stayed there and last week CAT and PET scans showed no trace of it, and blood work good. I go back in 4 months and then hopefully moved to a yearly scans. I am grateful to all of the people helped me get to this point and I think the best advice I have is to not just accept an opinion without asking a lot of questions and reading. Grateful to this group as a lot of advice made life tolerable the last months. Who knows what tomorrow will bring, but they were very optimistic at Mayo and at least I didn't go along with the first local urologist .
Doctors should not predict death. They may well be able to do so with great accuracy, but if pushed, they should be circumspect - IMO.
Retrospective prediction is OK though. About 4 years ago, my doctor told me that he thought I would be dead by five year earlier. I laughed & he said "No, I'm serious."
I always worked to be an outlier. The mortality bellcurve looked very unappealing. I read the literature & applied what I read. I was quite aware that much that I was doing was based on speculation. I made a few mistakes - luckily non-fatal - & learned from them. Along the way I worked with my doctors. It's good to be seen as a person & not just another patient.
My QOL has been up & down - more up than down - & the downs never needed medication.
For some, the formula is to get a good doctor & follow standard care. If you try to help yourself, it will either not work or will hinder your treatment. Nonsense! Look at the bellcurve. "Do Not Go Gentle into That Good Night"
My purpose here is merely to provide information that some might benefit from. Particularly dads with young kids.
-Patrick
• in reply topjoshea13
Hec yah patrick ! You are a rock for us all.
As has been said by Yogi Berra “Predictions are tricky especially when it comes
to the future.”
Patrick, you mentioned in your message (above), that you "made a few mistakes - luckily non-fatal - & learned from them". Can you tell us a little bit more about your mistakes and what you learned from them?
Thanks in advance, Franz
Franz,
The two that stand out - one early & one late - were: injecting vitamin B12 for 4 months in 2006, and initially following a standard monthly BAT cycle for 8 months in 2018/19.
B12 doesn't clear quickly - the body recycles it. Correcting B12 insufficiency increased methyl levels & allowed my hypomethylated PCa to become hypermethylated & more aggressive (my PSA had been static for 6 months with testosterone supplementation.) There were no approved demethylation drug to correct that. They are still working on that.
I discovered that I needed a 2-month BAT cycle & that controled a tiny met at S1 that was giving me leg pain.
-Patrick
You take testosterone? My docs say it needs to be severely reduced.
• in reply topjoshea13
Best wishes for continued success Patrick. I'm one of the dads with a young kid (7). He's the reason I fight so hard. I have a wonderful wife but the kid...
Good post Mine1958! Over five years ago I was layed up in the icu for a week only to emerge with bi-lateral neauphrostimy tubes and a foley for a year and a half. My uro gave me a 50/50 shot of surviving initial treatments . I did a 360 holistic lifestyle flip and went into remission
Over four years now with no visible signs of pc . My sweet Shahrnoosh married in this condition and her love is what really saved me. I had been the lone wolf bachelor pledged never to marry . But when I needed love the most God sent me her . I’m very lucky to be alive today . Even luckier to have unconditional love to see me through any storms ahead . Life is worth living for love. I don’t care if it’s a goldfish or a tomato plant . Love is love . Peace to you !
Magnus1964• in reply to
That's beautiful. Long life brother.
• in reply toMagnus1964
Happy days to you Magnus!
dhccpa• in reply to
What kind of lifestyle changes did you make?
In Nov 2013 I was originally diagnosed as very metastatic to many bones and lymph nodes, and had a ridiculously high PSA of 5,006. I'm still here after over 6 1/2 years.
No doubt you’re doing well stay inspired stay strong stay healthy and keep moving forward towards your goal of enjoying life
At Dx, PSA 1000+, at the time, when told that PSA of 4 is alarming. I'm like holy cow, what the heck, how many minutes I have doc?
Then was told, I have a large tumor in my prostate gland that is evading the bladder wall. But, the good news it's not metastasis of the bladder!
So, in less than a week, just with Casodex - turned this tumor into a necrotic mess. Eventually, after about 6 months of Lupron and Zytiga, PSA <0.02...
Now, closing in 3 years from Dx, PSA is still <0.02...
I am wondering about the mass in your bladder. Did it shrink? Is it still there or was it removed? I have a bladder tumor as well and I am was wondering if you could share your thought's on your experiences, thanks 😎DD.
Hi DD,
No mass of the bladder, it was the tumor originating from the prostate glad, that grew large enough to invade the bladder wall. Then the androgen deprivation therapy (ADT) induced this tumor's necrosis. The pelvic scan showed scattered dead tissue soon after ADT, thus the necrosis findings.
It's a good topic to understand, cancer cell apoptosis vs necrosis...
Thanks for introducing me to the terms apoptosis and necrosis, learning all the time. Cheers 😎DD.
Is the tumor completely gone now?
Yes, the tumor areas showed dead tissue (Necrosis)....
• in reply toctarleton
Hell yes! 5006 😳
It certainly keeps me spiritually connected
Prayer brought me through the most difficult times
Thank you so much Nalakrats you were always there to help me through
Thank you starting this inspirational and hope filled thread - lovely to read.
As a spouse, my perspective has totally changed - I am grateful for all the good things in our lives. Social science researcher Author Brene Brown says you can’t have joy without gratitude 🙏. My husband have some truly joyful times now.
Mine 1958? I am a ' 58 model too! Diagnosed Feb 2012. Gleason 9 PSA 19, T3. Got prostate removed and a summer of radiotherapy...
And here I am ! On ADT recently and still working out 3-4 times a week....
Oh and in the mean time I fought throat cancer in 2014 (surgery, Radio, chimo)....and moved from recreational to competitive sport...
Earlier in life I was doomed by addiction and a spiritual way of life offered itself to me. It worked and had been now for 31 years of recovery.
The same acceptance that all I control is my attitude helped me live with Retinitis pigmentosa that robbed me of 95% of my eyesight.
So yeah, Pca is a physical and mental challenge and granted not an easy one. But that's what it is. A challenge, not a sentence. What I make of it will determine how I live with it, just like the other stuff life dealt me.
I have been blessed with support all around and
not least my wife and soul mate who doesn't buy self pity !
What got me thru addiction, visual handicap and a couple of bouts with cancer will also help me to live fully during this new battle, this time against advanced Pca.
Thanks Mine1958 for initiating this thread.
Francois
I survived kidney cancer 31 years ago. Surgery to remove kidney was successful after tumour was discovered in fluke ultrasound. Developed prostate cancer 10 years ago at age 65. External Beam radiation did not cure me so have been on Lupron 6 1/2 years. Still on it with no "vacations." Latest PSA was .25.
Cancer became my teacher for living a more meaningful and mindful life. It is not for wimps as it demands courage and constant reflection on what is most important in life. Diagnosed in 2007, I retired from paid medical practice in 2008 (I now only do volunteer missions).
I re-committed the rest of my life to my spiritual journey which has always been job one. It has indeed been a tremendous gift. I am happy and the Great Adventure continues.
I always thought the most important thing in life is if my car passes the smog test.
Ah, yet another funny guy here. Keep it up!
Ten years ago we started this roller coaster ride. The urologist said to start working on the bucket list. My husband said there was nothing he wanted to do. Then he decided to write novels. He has just finished #14. Over the years I have done the research into new options. We got outside opinions and changed medical oncologists. The new one put him on Keytruda off label and the turnaround was amazing: undetectable PSA for the first time and holding thru a 4 month holiday thanks to COVID-19. At the last visit the doc. said he was thinking of putting my husband in the calendar of his
cured patients. "Centerfold?" my husband offered.
Diagnosed in September of 2004, Gleason 8, doc estimated a five year survival. RRP in December of 2004 at UCI...stage T3a. Moved to Thailand in 2005 in an attempt to enjoy 'whatever' time I had left. Always asymptomatic, ONLY adjuvant therapy was sacral lymph node excision three years ago which I now question since the transdermal estradiol gel (tE2), the only form of ADT that I have ever used (just during the last 26 months) has been keeping my PSA way, way down...last PSA was 0.003. Haven't seen a doc since the LN surgery. Now 77, asymptomatic, no special diet, workout with weights five nights/week (can't quite compete with 'Nalakrats' "300 lbs"); however, still raising hell in Thailand thanks to my mentor Richard Wassersug who got me started on the tE2 gel.
Hello ronronHu,
Would like to know more about tE2 gel. Did it actually allow you to discontinue ADT? If so, is it safe for all stages of Pca? I’m a G9, advanced Pca with multiple mets I was just diagnosed in March and have been on Firmagon for 3 months. Scheduled for chemo/immunotherapy (docetaxel + Opdivo) next month. I read Wassersug paper on this topic but would like to do more research. Especially on how it is prescribed and proper dosage. Any information you can provide would be helpful. Thanks.
Anyone else who is familiar with this treatment please contribute.
Stevana,
I have numerous posts on this forum regarding my relatively simple, alternative to standard ADT regimens. Not knowing much about your PCa situation makes it difficult to predict what kind of results you might expect from this form of therapy. However, if your T is at/or approaching castrate level and your PSA is declining while on Firmagon, this gel regimen may be as effective as many of the commonly prescribed drugs. The major reason that I am using the gel is because I didn't want to subject myself to the all too common side effects and the cost of the 'first-line' drugs. I live in Thailand and Medicare pays for nothing outside of The States. The 'Oestrogel' costs me less than $20/month and requires no doctor visits here. This is the only form of ADT that I have ever been on and the ONLY SE is gynecomastia (man boobs). Since estradiol is a natural occurring hormone in both women and men and this gel is made from yams and soy, I believe that it should be safe for any stage of PCa.
I am basically one of Richard Wassersug's students; he is the real guru and has written two books on 'Androgen Deprivation Therapy'.
If I can be of further help don't hesitate to private message me or you can even contact Richard.
We've been on this roller coaster for 7 years - that is a victory in itself! My husband is the patient, but I'm the researcher and advocate. Some times have been tough, but we're enjoying life and thankful for the time together. It took a long time to adjust our thinking from dying from cancer to living with cancer. We're changing therapies now as "things" are growing, but we remain optimistic since new treatments continue to emerge. Keep the faith!
Wow. These are great stories and we do need to hear more of them. About 24 years ago, my husband was diagnosed with stage 4 cancer and our daughter was 11. We were told that he had maybe a year and a half. He has been the guinea pig for others fighting the fight. Can't even tell you what things he has been on to get us to this point. His medical records now are housed in about 4 folders, each about 5 inches thick. He worked everyday as a landscaper until 2008 when the market fell and he went on chemo. Well, today, he is still pissing me off with his politics and rhetoric. And, that's a good thing. Although things went south about two years ago, when he tried Lyparza off label, he is still here and our daughter is 34. Those two are so close that I couldn't have envisioned for her, a life without her father. There is hope. BTW, if I didn't ask the doctor to do a PSA test on him at 52, he wouldn't be here. Things have gotten better since then in medicine from what I have seen. That's right, Yank66, new treatments continue to emerge!!!!
What an inspiring thread. I hope I can write a similar response in 20 years. Thanks.
9 months past my one and a half to two and a half year expiration date. Still walking and talking. (To the dismay of many.) I don't wish to seem as if I'm gloating. I miss whatsinaname and others who are the disappeared. I hope they are alright. To the many whose Father's Day was bitter sweet this year, I wish you many years of sweet Holidays. And to the other orphans here, who find Father's Day and Mother's Day a little uneasy, auld lang syne.
My wife left me...........
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 06/22/2020 10:15 PM DST
Married 40 years and counting, 8 years with advanced MPCa/ADT and we know what that means. I am blessed!
All of us who contribute to this forum despite bad days and feeling tired and unmotivated are each a success story of their own. Every day alive is a day that we beat the beast. I am 61 yo.. I had an open RP March 2016. Gleason 4+3: t3a N0M0... all good.. PSA became detectable again in early 2017 and slowly crept up to 0.46 by January 2020. The Urologist sent me to salvage radiation, 36 sessions which ended on April 1 2020. I had virtually no side effects, I even began to wonder if they were just shooting blank rays of light at me! I was able to continue my normal life and go to the gym( until it was closed for other obvious reasons in March). The radiologist told me to wait 6-8 weeks before doing a post treatment PSA. That was probably the worst part of the whole treatment, waiting for the results. Where I live, the patient picks up the test results and delivers them to the physician. I went to the lab on the Monday morning that they were ready.. and it took about 20 minutes before they brought them to me.. ( I had to wait outside). Although I tried to remain stoic during those long 20 minutes.. a thousand possible out comes raced through my mind. Finally a young lady came out, called my name and handed me the folded lab report, no envelope. I took a deep breath and put on my reading glasses so I could read the small print.. and my eyes targeted onto the number 0.15... ,, 👍👍👍..
I don’t think that I am cured.. my PSA could go down, or it could go up again over the next few years. It is a great relief that I can avoid ADT for now and hopefully for many years to come. I feel great and releived.. I will probably live with this for the rest of my life, which is ok, as long as that life is long happy and healthy.
Keep on moving on. Thanks for all the help.
I'm not a long term success story. But in 2018 I had RP. G4+5, T3b/c, lymph pos, seminal vesicle, bladder wall. After RP the docs at Mayo gave me 3 months before badness ensued.
So far, nada.
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