After rapidly moving through traditional therapies and the typical pattern of the available SOC playbook, I got a ‘Hail Mary’ with Keytruda. Without that, I’m sure I would of died by now, my family thought so too (but never said that to me). The 2019 Thanksgiving was a larger than normal gathering of family (who thought it might be my last), as I was bald and weak from my second run at Chemo which wasn’t working and it was not looking good.
So here I am two years later (at age 51) Feeling pretty much normal. Prostate cancer doesn’t plague my mind as much as it did in the past. Instead I’m thinking about stuff I need to do, planning vacations, working around the house, working full time and stepping back up towards the level of performance I once expected of myself at work. I’m wondering what is happening to my children as they transform into human-like but most certainly alien-possessed teenagers. In other words life has been pretty normal (with the exception of the pandemic, US domestic political drama, etc..).
I saw my MO a couple weeks ago and thanked her for helping me live long enough to see my kids become teenagers and expressed my need to live long enough to watch them become human again.
I was getting my affairs in order and preparing my family for my passing, … and then I got better. Getting better after being so close to dying was actually a tough mental challenge for me. (I know this is the wrong audience to complain about this too). As Cleodman shared, he reached a point where he was not fighting the current but instead floating with the river. Some may call that giving up, I don’t see it that way anymore. I see it as a transitional step of the journey that we all inevitably take. I had finally taken that step mentally. And pivoting back to fighting the current was/is hard. This resistance to pivot back to the fighting of the current, made me feel like I’m “giving up while getting better”. That transition; from fight to float and from float to fight takes work, just as it would to turn a canoe on a river and head back upstream. I mention this because I’m guessing I’m not alone in this experience. After taking so many arrows in this fight, always watching the PSA drop and then eventually rise again, getting hopeful, then full of fear and worry again; it just seems easier to let go of all that worry and follow the current of the River. So have I lost ‘hope’? have I lost my fight? I don’t know. It seems more like a paradigm shift in my thinking, I’m not worrying about surviving and I don’t want to fight that current. Instead I want to enjoy the journey, however long that might last.
After my PSA hit a high of 122 and then started rising while on Taxotere and having gone through most SOC including 2 runs at chemo, a clinical trial and other SOC. I got on Keytruda which crushed my PSA to undetectable (<0.01) after three cycles, where it stayed for about a year.
In my second year of Keytruda my PSA has slowly crept from undetectable (<0.01) to 0.01, 0.04, 0.07, 0.10, 0.15, 0.19, 0.15, 0.26...). I don’t like the trajectory but there are so few of us on Keytruda it is hard to really understand it.
Im now 51 finishing my 6th year post-diagnosis. I hope to get a PSMA pet scan soon to see if I can find the source of PSA, perhaps get a sample for analysis and then blast it with external beam radiation (palliative for my pain of course).
After resigning myself to death two years ago, and then surviving I’m no longer feeling panicked by PSA swings, labs or scans. Hard telling what the future holds but I’m doing good today and that’s what counts.
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Chugach
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Beautifully expressed, you know my husband only got 2 doses of Keytruda after all else failed and 2 1/2 yrs later psa still undetectable and any Mets still shrinking,feels great. We do not know what tomorrow will bring but without Keytruda there may not have been a tomorrowI pray you continue on a path of wellness, my feeling is they know what worked once if ever treatment is needed for my husband again the direction should be clearer.
I’ve had 21 Pembro infusions now with no plan to change course. I don’t know if more infusions benefits me or just Merck. But I’m not planning to rock the boat and instead stay the course for as long as I can
Just wondering - in your bio you refer to a second test for mutations which revealed micro instability high. Does that mean that this developed after different treatments or wasn't it looked for in the first test ? Thank you. Nicola.
Thank you for sharing that, and thank you for giving me the opportunity to discuss what I’ve been feeling.
I started talking with a therapist a couple months back, to help deal with depression of fighting this, and the thought of not being able to protect my wife and daughter. The therapist said something that I think about whenever I feel overwhelmed, “The only way past grief is through it.”
It sounds like you came to peace with your path, and I honor you for that. It seems like I’m starting to win the fight, so I can postpone the process for a while.
Even though we all know logically that we will die someday, it’s an abstraction until we actually face it. I know I’ll be a different person at the end of this, but I don’t know who I will be yet.
The mental side of this is not discussed often enough on this forum. I think all men dealing with this should have a therapist on their team along with the RO, MO, URo, … I too was crushed by depression early and filled with worry for my young family. Sertraline helped me find some balance there and just talking through it with an unbiased professional.
Be yourself today. Live in the present . An asteroid could take this world out at any second. No more worrying about tomorrow then . I had a dr once tell me when I was close to death. “ ain’t nobody getting out of this one alive”! He was right . Dam straight! Have a great day ! 😎✌️
I have been doing this for 5 years and worried constantly about my wife after I pass, She is coming to grips, will be financially great but I have worried about her without me as we are a team since we have no children. But low and behold two beautiful women in my life have stepped up and will be providing the support she needs. I no longer fear death but look forward to making way more memories with my people
What an inspiration too many the vision the attitude ant most importantly the will to overcome all incoming negative and external forces that to all days to me I’m not finished until the good lord days I’m done.. hoorah to you and your mission. Like in the movie THE DARK KNIGHT RISES. Good luck and you are amazingly an inspiration to all of us
When I replied to you earlier, I ended up blending my experience with talking about yours. That seems a bit self centered to me, so I want to reply again. This may be more personal than you would want to discuss in an open forum, but I’m offering my thoughts here so other members can learn from you. If I’m out of line, please say so.
It sounds like you are a different person after accepting death, then being given a second life. It seems like are trying to define who you will be in your new life, and what is important to you now.
I haven’t gone through the same journey, so I don’t think I can offer any insight. There may be others on the forum that can, or a counselor that may be helpful in your new journey.
It’s not quite like that for me. I don’t feel different or wondering who I am now. I am just the same but without the burden of worry and grief. It’s pretty nice to leave that weight behind
Thanks for your honesty and openness. Mental and emotional health is so important in dealing with serious illnesses and sometimes is very elusive. I’m glad that you are in a good place.
Most men that I’ve known (Irish and British) have a macho image that they try to project and have a difficult time being real and vulnerable because of their upbringing.
Both medication and talking therapy have so much to offer, I speak from personal experience. I’m glad to have used both and have benefited enormously even prior to my prostate cancer diagnosis.
Thank you for providing insight into an unusual turn of events and how it has impacted you.
Life teaches me new things very often but only when I’m open to it.
I wish you the very best on your continuing journey.
Coming back after a death sentence and getting my affairs in order to Life Is Good, live it to it's fullest, is tough. Many thanks to those here who have given me hope and insight into treatments and survival/. You have expressed much of what we are going through beautifully, thank you. I'm now 3 yrs past my expiration date and feeling good. Bless you.Doug in North Idaho
Go keytruda! Wonderful news. You give us a lot of insight to our realities with pc . I too thought I might not make it initially. My docs agreed at that time. I’m Glad they they were wrong. It really is about living with happiness each day not under the beast foot. Teenagers aren’t human? Haha hilarious 😆. I was once one. I was crazy too. I’m glad that you’re here today . Keep rocking ! Keytruda has helped many. Right on ! I have do much respect for a young man such as yourself dealing with this . I was 53 now 60 . You’re so
Young . I’m sorry for that . Hang in there for teens. They need you ! 🙏👏🏼👏🏼👍
similar story..diagnosed At 59 with Neuroendocrine differentiation..SOC failure... given 3-6 months at best for most lethal form of this disease..was putting my affairs in order after this devastating news, but in meantime my prostate was removed and sent for Genomic Sequencing at Foundation Medicine..it was found I had a rare POLE mutation and a Hypermutated Tumor Burden, , MSS, PTEN, TP53, VS411, and matched to 21 clinical trials and PD1 checkpoint inhibitors..I started Keytruda, I have had 55 infusions and been in Complete Durable, Clinical Remission NED. I have stopped all treatment , albeit 2 annual maintenance doses with Bloodwork and Yearly scans, I'm now 66 yrs old and living a normal active lifestyle 7 yrs from that fateful day of diagnosis..I'm a patient advocate for several Cancer Foundations, I speak around the Nation for the advancement of Immunotherapy and the importance of both Genetic and Genomic testing for possible precision targeted therapies for all cancers and provide hope and inspiration to others to never give up the fight, advances are coming in treatment options...Good Bless all us Warriors.
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