-IMRT from April-June of 2019 (in addition to bicalutamide which was supposed to last 2 years)
-Undetectable until today (.13 - just updated my profile)
We have an appt with his doc, but it’s not until next week. I’m anxious & could really use some input. Thought we may have knocked this thing out for good, but now it’s creeping up again. Other than some slight neutropenia, he has felt great (minimal side effects from all the treatment-we have been so lucky in this regard!)
What I want to know is this:
Does this mean it’s now terminal? Stage IV?
Is he still considered hormone sensitive?
What are typical next steps?
Best oncologist recommendation in midwest area (actually- we’ll travel anywhere)? Currently we are only consulting w/his radiologist.
We have three littles (one w/significant needs), we’re a bit of a mess today. Crying in between making sandwiches etc. Tomorrow will be better.
Thanks for any/all advice/direction.
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pwallace
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As I understand his situation, he had SRT last year with one year (so far) of bicalutamide. Resistance to bicalutamide is starting. When this happens, stopping Cassodex will make PSA go down - the cancer has adapted to feeding on the Casodex. He also has IDC-P, which means PSA is not a very good indicator for him. I think he should substitute Lupron for the Casodex. There are clinical trials for advanced androgen therapy(adding abiraterone, enzalutamide or apalutamide) in this situation. Early indicators are that a more intensive hormone therapy may prevent further progression:
Thank you for this, Allen. As always, I hang onto your every word. When you say PSA is not a very good indicator- do you mean that intraductal doesn't always make PSA? Will look into the trials now, thank you. Could you recommend a top oncologist for us? We'll go anywhere, do anything. 🙏🏻
Yes, that's exactly what I mean. IDC-P doesn't express much PSA, so you have to use alternate ways of tracking progression (like scans). I don't know if it shows up on an FDG PET - ask an oncologist who has experience with it.
Has he ever had a germline genomic test? BRCA2 has been associated with IDC-P. If positive, a PARP inhibitor may be useful.
I would look for a urologic oncologist who has seen and treated a large number of IDC-P patients. I would think there are some at the larger cancer centers in your area - UMich, Karmanos, Cleveland Clinic. Maybe start by sending a brief email to Dr. Alumkal at UMich jalumkal@med.umich.edu and asking him if he sees a lot of IDC-P patients, or whom he would recommend.
Dear Summer , I just read your bio and was crying for you until I just read Mr Allen’s response . He’s know more than many Doctors do. Great job advocating . You’ve come to the right place for support . We have a rapidly climbing membership of over 10k . That means thousands of us that are in similar shoes can relate to everything that you’re going through . My heart rocks for the younger a man is and especially with a young family at home .Your husband is so very young and you say he feels good now. ? Thank God for that ... His youth just might give him the strength to conquer this beast inside. This is what I pray🙏Your story has caught me by my heels spinning . Normally a man gets pc at 65 and on up. . I was 53 five years ago myself and felt way to young to be so messed up with APC . By the time we are 65 or 70 most have retired and payed things off and hopefully are settled financial . At 41! He was just starting ! He’s done done . No way ! Shocking to me at that age. For this I am very sorry . You being young smart and strong yourself can carry everyone if need be . The emotions.. It must be tremendous for you ? . I see such a strength of character in your words . It brings me hope that you two together will figure this out and feel better and stop the fear factor . We all go through this . So T_A says it’s not resistant until .2 ... so take a deep breath for yourself .. there seems to be many new drug options and more coming down the pike. Maybe even a cure for him because he’s so young . I think he’ll live for decades. Many have . He has you and the kids for his reason to do so . May God bless you ,your two boys and your young husband with an improving status with pc ? We have many that bribe in the power of prayer . I imagine your now on this powerfully prayer list . Very compassionate people here. No need to suffer alone. E can speak of anything here. Private chat is available to is all. It is my honor to hear your story . I have a good feeling that he’s going to get into a clear status again. You are on top of this . I am Scott in Prescott Az. My wife spent 4 decades in Cali , I grew up in Marin county and spent 2 decades myself in We just might have as many wifes as men as members here. ? I’m sure the women can tell you some things also . Like you they are searching for their man . Thank you for sharing your story with us . You are one beautiful family . 🌵🙏
Consider the Mayo in Rochester Minnesota. Also, when you get there talk to them about Lupron which I have been on for eight years. For the first four years I had a regimen of Casodex and Lupron. Now it’s just Lupron since 2016 as my doctor decided it was unnecessary (new urologist when we moved to Florida.) Talk to Dr. Kwon at the Mayo about curative radiology treatment – is it realistic?
Hi, Summer. Some great thoughts here between Tall Allen and the best-ever: Scott aka Whimpy-p. I got my diagnosis at 48 at the same time as your husband, when the kiddos were just hitting high school. Since my wife's and my main fears have been centered around them and me being around, it breaks my heart to read your story, because there is no pressure like "this must work because I have fathering to do"....
Well, its coming up on 4 years now - hard to believe - and 1 year to go until my son graduates and my first goal is reached. Now, for my personal answers to your questions:
"Does this mean it’s now terminal? Stage IV?" - First: This is not likely now, but he has IDC-P, which means we should definitely move to see what's going on. Second: I've learned that Stage IV doesn't mean terminal, even though it doesn't always mentally feel that way. Third: Once I got passed the "terminal" part of my diagnosis given to me by the ignorant , the Stage IV label only became leverage for insurance (e.g., Stage IV + my glowing youth presented the opportunity for a type of immunotherapy treatment - Provenge - with no argument). Fourth: I also leverage these labels to simply live my life each day to the fullest (sorta why keeping up with Whimpy-p is important)...
"Is he still considered hormone sensitive?" - In terms of "normal" APCa treatment, Lupron has become the de facto measure of hormone sensitivity, not bicalutamide. So we simply don't know if he is still hormone sensitive. Again, the whole IDC-P factor makes it tougher because so much of "normal" APCa treatment is based around PSA.
"What are typical next steps?" - The first step is to dump the word "typical." Tristan's journey in PCa is his (and yours) alone. Sure, there are likely models out there to follow (and you should find them), but cancer is a tailor made enemy - us attacking us. It's all statistics and poker, and the best way to feel empowered is to understand all of your options (specifically with the IDC-P modality your husband's genetics should there be any) and play the hand that makes sense to you.
As Whimpy-p and many others here would say - it's how Tristan and you and your children feel today that matters. Eat the heck outta them sandwiches, dang it! The storm isn't here yet, there's time to batten down the hatches and stow the yardarm and, uh, other shippy storm-prep talk. Since I've successfully steered us down a pirate path, I will leave you with two quotes I routinely use regarding my cancer:
"Take What You Can, Give Nothing Back." - Captain Jack Sparrow.
"Goonies never say die." - (unsurprisingly) the Goonies.
aww Joe, I love all of this. Thank you for taking the time. So glad you're so close to meeting your first goal. Parenting during a pandemic is hard enough- throw in a recession and advanced prostate cancer & things get v interesting in a hurry. Right now our 3 kids are in elementary school, but I know my husband would give anything to see them through their schooling and beyond. One of the things that broke him yesterday was realizing that our 6 year old will only be 16 years old in ten years time. Feel like we need to focus on the day to day, it's so easy to get paralyzed when looking at the big picture.
Love the idea of setting goals & celebrating small wins along the way. Thanks for answering all of my questions. I research so much, but it's never enough- I just can't wrap my mind around the logistics of everything. But like you said, it's a tailor made enemy, so figuring out the best way forward for Tristan alone is all that matters. He said he was going to join the group, I really hope he does (right now I read all of the responses to him)- it helps so much to know you're not alone, that there are so many people all over the world trying to figure it out, too.
Thanks again for your response. really appreciate it.
My husband Bob advanced to stage 4 PC in 2014 with 5 lesions on his spine, started Casodex for 28 days, then had Lucrin injections for 1 year. PSMA scan later revealed only small activity on one lesion. Then had a holiday from Lucrin.
January 2017, PSA started to rise, had PSMA scan which detected PC in lymph nodes and one lesion on his sternum. February 2017 Bob started on Casodex 50mg, Avodart 150mg daily and 3 monthly Lucrin injection.
Bob’s PSA remains Undetectable and he is very active and healthy.
I know how devastating it is being confronted with PC, but there are lots of options. I did lots of research, and we are very blessed to have a great Oncologist who works with us as a team. Bob’s PC is in remission and we have learned to live with it.
Stay strong and I pray you find the right treatments to get the PC into remission.
Bob had a RP in 2005, plus radiation, unfortunately the cancer has kept on coming back, but thankfully he has been in remission for more than 3 years now.
Thanks so much, Lee! I keep forgetting that this is an international forum! But how we'd love to visit Australia some day. So glad you've had so many years together in spite of this yucky cancer. We are hoping for many more as well. xx
Hi Summer, i have just read this post and im so sorry to hear about your husband. Please know that you are not alone. My husband was also diagnosed with stage 4 metastatic prostate cancer just after we celebrated his 44th birthday. That was 2yrs ago (2018) with our youngest child at 4yo then. He doesnt have any family member/relative with Pca or any type of cancer. He was very active in sports before diagnosis, both of us were, since we were doing local triathlon competitions. So, the stage 4 mpca diagnosis came as a big surprise to us. And like you, we have 3 kids as well.
In the past 2yrs since diagnosis, he has been through zytiga, chemo, back to zytiga and now just finished the first session of Lu177. He worked all throughout diagnosis because here in the Phils, we pay for our own medications, no clinical trials to enrol to.
But let me tell you that when you’re going through something difficult, it’s easy to get discouraged. It’s easy to fall into the belief that things won’t get better, or that you are weak for not breezing through everything. But this community has been a wonderful source of INFORMATION, STRENGTH, INSPIRATION and HOPE that things WILL GET BETTER!
Just stay positive, keep the FAITH, vent out if you must but keep pushing FORWARD! We are here for you, your husband and your kids as no WARRIOR fights alone 💪💪💪
Thank you so much for this. Just read your posts & all I can say is WOW- you're amazing & I'm in awe of your strength and perseverance. Have added your family to my prayer list. I really do believe in the power of love/prayer, especially when it's all pointed in the same direction. Thanks again and again. xx
Thank you but like you and everyone else, i am not strong or positive all the time and thats okay. But i do agree with you 100% in the power of prayer/love. Prayers help me cast out all my fears and negative thoughts enabling me to fully trust in His care, providence and mercy.
Keeping your family in our prayers🙏🙏🙏Sending you love and light.
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