Hi Gents,
I am just curious how many other “long haulers” we have in this group?
I have had PCa for 16.5 years. I was diagnosed Stage IV, aged 45. I am now 62. PSA recently went up from 1.0 to 1.4; not losing any sleep over it. After 40+ months of Erleada, Lupron and Xgeva, I am taking a 4 month holiday!! I have also switched to a Pescatarian diet.
Please share your age and how long you have had this mother of a disease.
Thanks a bunch!
I was diagnosed Gleason score 9, PSA 39, at age 42. That was 30 years ago. I started out vegan, then vegetarian, now Pescatarian. I have gone through a mountain of supplements, and by the way I don't believe in "vacations" from ADT drugs.
Thanks Magnus! I appreciate your reply.MJ
Mazel Tov!
Hi, I was diagnosed with PCA Gleason 8 in 2009, Surgery 02 02/2009, Detectible PSA in 2017, IMRT in 2021 when PSA reached 0.12. Now awaiting an appointment with an MO at MD Anderson to plan the next stage most likely ADT +
Have you had three consecutive rises in PSA?
Yes I had a slight rise every year from 0.01 until in reached 0.12 in 2021. I had IMRT in the summer of 2021 but the PSA continued to rise and it is now 0.19.
ADT would be the way to go. Start with casodex or zytiga.
That is what I expect will happen when I see the MO. I'm still waiting for my insurance to approve it. My PCP already sent then the referral.
Magnus, I've been checking drug prices in anticipations of being on ADT. It seems that my out of pocket prices with AARP Medicare advantage PPO is sky high for Lupron, Zytiga and Xtandi. Have you had a similar problem?
I personally have not yet faced high price drugs. When I was on zytiga, then xtandi I was trials for each.
You might try India. The drugs are from the same manufacturers as here in the states at much lower costs.
Thanks I will look into that if I decide to go the ADT way or the orchiectomy.
If you need a contact in India let me know.
Thanks, I appreciate your help.
Hi MJCA, I was diagnosed in 2011 with a PSA of 9 & had radiation in 2012, so that is 11 years for me. Had many ups & downs in the meantime & never wanted chemo but recently had ADT.
Short hauler here. No idea how long I have had the disease but diagnosed almost 3 years ago. You long haulers are what I aspire to be.
5 years 9 months
5 yrs 34 days 18 hrs.....😆
Now 52 - 6 yrs
Les is 18 years now and still on Lupron every 6 months. Stage IV, Gleason 10.
This is incredible! When was he diagnosed with advanced?
He was diagnosed in the fall of 2004, surgery Dec. 2004, first lupron shot Feb. 5, 2005, 7 weeks of radiation, Casodex for 3 years, 1 year Zometa infusions. Lupron shots every 6 months still. Gleason 10.
These are the cases that bring hope, so happy for him and you.
I know. I would check on You Are Not Alone frequently. Then I discovered this site. Back then they threw everything they had at Les, his age, and the aggressiveness of his cancer and the fact that it was in his tailbone, up the neck of the bladder, etc. Prognosis wasn't good, doctors would just look at me with the saddest eyes and I knew. Research has helped me cope. Les doesn't want to know the gory details so I'm the keeper of the info. He leads a normal life for a 73 year old. Living in Hawaii doesn't hurt either.
That is incredible, I’m sure living in paradise is part of the txt keeping him going! I feel the same about my dad, I get the impression he doesn’t want to know the details and I don’t know that I always want him to have the ups and downs and spirals I have reading sad stories and then happy ones. So I research because it gives me some feeling of control, and I’m hoping my dad is an exception like Lee. 🤞 I really need him to be.
Well, we sometimes know what's best for the men in our life with cancer. I felt "why have 2 depressed people" when he was diagnosed. He went into zombie mode sitting in the doctors' offices but I stayed alert and kept the dates and numbers in my head. By researching, etc., I was able to stay intellectually involved while I kept my emotions in check. It worked for me. His doctors (one has died and two have retired since his diagnosis) know to talk to me without me saying anything. I have a feeling they've seen this before.
Ha! That sounds exactly like how my dad has been. I agree, cancer is enough stress in itself. All the details can be too much.
It sounds like your dad trusts you and that's good. It also sounds like you're strong enough to carry the burden.
I just read that article about Seals. I remember telling Les in the doctor's office after being told he was Stage IV, "we are buying time". Well, it's 18 years.
Diagnosed in 1995.. Had an RP w/Gleason of just 6.. Later had radiation, chemo, orchi, Casodex monotherapy (got 6 yrs out of that) and am now on Zytiga & Prednisone & have flat lined at PSA of 0.04.. Hoping it stays that way for a long time.. I'm now 78 so have had it for 27 years.. Good luck to all...
Wow MJCA you’re doing great - what an inspiration - long May it continue- I’m Gleason 4+4 & 2 years in
… & 59 years old
I am here on this board as an advocate for both my husband and my brother. My brother was originally diagnosed in 2007, metastasized 2009, and at 81 is a survivor of 15 years, 13 at Stage IVB.
His Gleason was 7, 4+3.
I have been his advocate since his recurrence in 2009, helping to manage his care.
My husband was diagnosed Stage IV just one year ago, but his cancer is far more aggressive.
My original diagnosis in 2000 was Gleason 7, opted for clinical trial radiation and chemo followed by Zoladex, then Lupron, added Casodex, Erleada, Zytiga.Removed the prostate robotically this past January and await a PSA test in a couple of weeks. I am a blessed individual considering the so many who fought much shorter and more painful battles.
Age 53 prostatectomy, T3b path report. Radiation, Firmagon, Lupron, Zytiga, now at Dana Farber LuPSMA617 trial. I'll be 68 years old this year.
5 years definitely not the same man I was in 2017. My Doctor promised me he would keep me alive to see my Grandkids grow up. So far so good
June 2003 I had my prostate removed, 2009 radiation and March 2019, 18 months of Elegard. PSA today .01 but rising slowly. So far.
Gleason score 10, PSA 72. DIAGNOSED February 2015. Am now 65.
8 yrs Gleason 9, PSA 10.5, lethal small cell Neuroendocrine differentiation, 6 yrs of immunotherapy, complete Durable Clinical Remission NED, and no treatment for 2 yrs, other than x2 maintenance doses annually.
What was your course of treatments and supplementa used have you used Fenebdozole or the joe tippens protocol
None of that... Docetaxol/Carboplatin, Taxatere / Cisplatin combo chemo regimens...surgery Prostatectomy, Genetic and Genomic Sequencing, 55rounds of Checkpoint inhibitors PD1 immunotherapy.
Immunotherapy Pca -GcMAF revisited - A critical overview of the research of Nobuto Yamamoto - ScienceDirect" sciencedirect.com/science/a...
Dx May 2006, psa 15.7: G4+4(+5). Surgery then Zoladex, RT in 2012 for sacral met plus prostate bed and nodes, 20 months off tx with T increase and no psa then Zoladex again for a year. Eight months off, T returns and now 5.5 years on varying dose of enzalutimide; 1/day, 2/day now 4/day. psa now 0.12 and stable. Two genetic tests with no actionable mutations.
8 years 4 months
15 years for me, following robotic sgy, I have had no follow-up treatments since then. Watching my PSA every 6 months and have always been between 1.0 and 3.5 but no higher. Still buying my jellybeans one at a time.
nearly 84, diagnosed G9, PSA 40 13 years ago, metastatic to retroperitoneal nodes only (important distinction), got lucky with Keytruda
27 years so far. Dx’d at age 48 with PSA 10.8 in 1995, upgraded to 12.0 at surgery. T2b. Prostatectomy in 1996. Recurrence in 2005, current PSA 0.72, climbing slowly. Avoiding further treatments until absolutely necessary.
31 years and counting. Prostate removed in 1991. I'm 85 now. After recent Lu177 treatment, PSA dropped from over 100 to 0.06. I've have had all the treatments and still fighting.
Are you non-metastatic, or were you for most of those years?
I was diagnosed in 1999 ( at age 55) with a Gleason of 7.0. Opted to have prostate removed.PSA was under control with radiation, Lupron, Casodex until 2020. Started Xytiga in 2020 and PSA jumped to 126. Did Chemo ( Taxotere) in 2021 which initially brought PSA down to 26. Started Lynparza in September 2021 when PSA went up to 130. Current PSA is 170. Starting Lu-177 in April 2022.
Despite high PSA no significant change in metastasis and thankfully no pain.
"How long is a long time"? you asked.Noticing in this thread some guys with a couple years behind them in treatment.
I think they are like me.
When given the stage 4 dx then thankful to have made it a couple years so far even if it doesn't match up with those that have 5,10,15, 20+ years under their belt.
Next month will be 2 1/2 years for me.
Didn't see a Dr. for eons so I had PC long before I saw a Dr. I speculate.
At dx 2 1/2 years ago PSA of 1621, bone mets skull to shins, lymph mets pelvic to collarbone. I am feeling like 2 1/2 years is a long haul. Very thankful, grateful.
Currently PSA 1.6 (2 weeks ago) with prostate of course. Whatever is left of it after rampaged by cancer, chemo and adt, plus Zytiga.
We are all different but still the truly long haul of some of the brothers here in this thread gives hope for more years.
As I have told my family before. Step one is to get a response from treatment. Some are not even afforded that. Its sad.
Originally diagnosed in 2006 and metastatic in 2016. I'm 79 now and PSA is 0.38 on Eligard and nubeqa.
Thanks for all your replies! Diagnosed Jan. 2022, Gleason 6 last PSA 9. All these long haulers really lift my spirits!
Started out stage 4 in April 2017. Be 5 years in a couple of days. 72 next week. Starting Xofigo Weds. and we shall see how that works out.. Radiation to 2 mets ended Friday. PSADT up to 2 mo. (better then the DT in one mo. I had before last treatment started). Wish we could all be long haul guys, but I have seen so many come and go in the last 5 years. Hard to watch guys I've known here for years hit hospice and die.
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