Dr Drake placed me on Eligard in December due to a rising PSA on full dose xtandi. PSA was 1.7 at that time. Ct showed common iliac and retroperitoneal nodes. Bone scan was negative. Follow up PSA in Jan was 2.5 with testosterone <3. This week PSA is 3.9. Testosterone <3. Ct shows enlarging nodes. Bone scan shows a lesion at L2. Have not had chemo or immunotherapy other than Leukine which was stopped when my PSA was rising. No pain, but emotionally much worse than during any part of this journey. Feels like the beginning of the end game. I’ve been sobbing all morning. Could use some advice and encouragement. I see Dr Drake next week.
Sincerely,
Rex
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Rexwaterbury
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It's not surprising that your PSA continued going up after Eligard, because Xtandi already failed. However, the Eligard is slowing the cancer's progression. Sometimes, docetaxel can reverse Xtandi resistance. I'm very impressed with Dr Drake. After docetaxel, you will also be eligible for Scott Tagawa's trials of radiopharmaceuticals at Weill Cornell.
You’re facing what most have or will....the doors are opening on advancing treatments...keep the chin up...the lows will be nothing compared to the peaks as they sort your particulars out. I’m betting on a breakthrough on the ANDROGEN RECEPTOR and it’s role in secondary Mets. Jmho...Stay hopeful and involved...there are bright sides to every emerging development......We’re all pulling hard for you.
The vast majority of us go through highs and low times through this process. Those low days can be a gift.
One time I had to pull my car over and just started bawling by the side of the road.
I don’t kick myself by having the odd emotional meltdown. It gives me strength, insight and empathy for the other people I’m dragging along on this journey
Rex, I hope you take some encouragement and solace in the tall Allen and jbooml’s words. These lows are transient and part of the process. I’m very confident you’ll experience plenty of better days during this unwanted journey.
Instead ask , what are the chances that .. chemo will extend my life? And no matter what the answer is ....you can do better...most long term survivors were told they’d be long dead by now too. Follow your own drummer . Latch on to your reasons to live and fight for those reasons ........ Emotions can run wild for us altered fellows . You ain’t alone in this ... APC is a bitch ... get back on the horse and ride like you’ve never ridden before .. ..we must fight hard everyday to live with APC . But to die ,all we need to do is to give up .. choose life , and go for it.. deep breath sir .. you will do what you ‘ve got to do . We all do .. good luck moving forward .
Listen to wise Lulu, and don't look at specific stats, Rex - we are not stats until the end of our run. Anything is possible....good, bad, or indifferent.
I totally applaud you for reaching out not only for info but for support. Like Ottawamike, I understand that my fearful side will have its due...but just not when it comes to deciding treatment.
Rex - When first diagnosed in 2016 I was given a very bleak future and it felt like my world suddenly crashed around me. I drove home and cried in the driveway. I then told my oldest sister and parents and sobbed uncontrollably and all I wanted to do was hold my daughters. I was 46, children and to many things I love that I'm not ready to let go of. It's not an easy path and accept you are going to have highs and lows. It's Stage IV cancer and we are up against a tough opponent. We didn't ask for it but it's the hand we were all dealt and it's okay to have bad days, just don't let them overshadow the good. Shake that shit off and get your mind in strategic fight mode.
I was also diagnosed with disease in pelvic and retropenial nodes and clear bone scans. I had a lot of disease in my nodes and after 4 months of ADT I was offered 6 rounds of chemo. I responded very well to it and it cleaned up a lot of the cancer. So much in fact that after having a prostatectomy and 42 nodes removed the surgeon was surprised to only find one infected. They still looked large in pre surgery scans but it was actually scar tissue making them look that way. Chemo also shrank the tumor on prostate down to a fraction of it's size. From my own experience I recommend the chemo treatments. Most guys tolerate them well.
Ron great advice for Rex .. my wife ,then girlfriend , and I cried like babies for two weeks 3-15 with #4 node similar dx. So yah , we all can relate to Rex.. take care Ron.
Well said and done sir.....motivated self participation in one’s own treatment course has such a positive effect.
Go with your Dr Drake. My heart sinks every time I see another guy take a hit in progression. How long have you been on this path with APC? It’s like the bell rings and your back in the ring again for another round of beatings. Damm . I’m not god or even a doctor but I think that you have to fight another round now ..... It’s like the mob...just when you think you’re out they drag you back in. Let it out now ..cry ,kick , and scream ,then back in the ring “champ” Youve got some more fighting to do . This is the path that we are all on.. Peace
I’m 10 years in since diagnosis. Surgery by Patrick Walsh who assured he could cure me. SRT at Hopkins 3 years later. Another recurrence 1 yr later and began seeing Dr Myers until he retired last year. Been with Dr Drake ever since.
We all struggle emotionally and physically especially under the Lupron influence. Hang in there, sounds like you have an excellent oncologist. Have hope! We all live with hope!
I can't speak to what is the right treatment protocol or where you really are in the progression of the disease (can't even figure out my own!) but I will say that I consider one of the good side effects of the ADT is that it breaks down our emotional walls. Crying is a helpful cleansing of the intense emotions that would otherwise build up and work against our immune systems. I think most, if not all men with this disease cry a points along the way, due to the shear stress of dealing with this disease and all the daily life issues that may or may not be associated with it.
Getting rest and taking deep breaths, focusing on the small everyday joys is what helps me most. I hope you find what you need.
Sounds great. We have stayed there a couple of times when we had an early morning appointment. Nice that they have a restaurant and bar. Not sure if you can private message on this site?
Rex hang in there, Drake is supposed to be on the cutting edge of immunotherapies. In Myers' newsletter of a few months ago, he was, I believe, discussing new immunotherapy possibilities that involve combinations with other drugs, etc. He'll probably tell you all about it, but it might be worth it to pick his brain about his latest trials.
Rex crying is good for me... cause the more I cry the less I pee. Dr. Drake ain't no flake so listen to his shake and bake. If you're not smiling by now then I'll refund the price of your admittance. Please, Please (must be an echo in here) laugh your ass off. Laughter is the best medicine. I'm sure Dr. Drake will not keep you in the Duck about your progress.
Down times are normal; you have to let it out sometime. But that is an excellent time to do something nice for someone else You'll be amazed how much better that makes you feel. There's lots of times in this journey when you have to mentally force yourself to do something even when you know it will help. Try to find the good things that are there in every day. Concentrate on the parts that don't hurt. We're with you every step, brother!
If you end up doing docetaxel--consider the MM-310 trial....Ask Dr. Drake to look it over --a liposomal version of docetaxol--higher tumor affinity according to preliminary work.. less side effects Consider it as an option-- In the mean time, keep your head up...feel overwhelmed, angry, cry for a brief moment, but then...get your head in the game, and fight...
I felt like that the last few months as my meds failed and my PSA shot up and new Mets showed up - it’s difficult to shake getting down. I just started a high dose testosterone clinical trail (100mg/day gel). Having hormones again washed the blues away for me quick. I think ADT was affecting my mood in ways I wasn’t aware. I hope this trial works for a long time cause I don’t want to go back to ADT
Yes, there were times when I thought I had lost the battle, but now I am cancer free!!! I stayed the course and was on Eligard for 6 1/2 years with 72 radiations over 10 years. I have had no therapy for 1 year now and I am grateful for all the men who perished so I can live! There is a light at the end of the tunnel, and just keep truckin'.
Update FYI. I saw Dr. Drake today. I will continue on Eligard. I will be changed from Xtandi to Zytiga. I am also now enrolled in his latest clinical trial involving an immuno-therapeutic agent that binds to the adenosine receptor on the tumor cell. If I have no response to this regimen in 2-3 months, I will start chemo.
Glad you have a plan. He is very good at explaining things. Will you be traveling to NYC weekly for the clinical trial treatment? How far of a drive is it for you? Would love to hear how it goes since I may be looking at that when latest chemo cabazitaxel fails. I have at least 3 more rounds.
Yes. Weekly drive from Virginia Beach to nyc. Seven hours up the eastern shore. I would like to private message with you more frequently. Is there a way to do that on this site?
I feel your trouble. Had my share of angst and anger and self pity with the bad feelings associated with PC and the horrible thoughts and feelings since PC discovery and treatments and surgery since. I take comfort from pain medication and the thoughts that this will not last forever. I pray to Jesus and this helps. Rex I pray God gives you the strength and determination to endure as the days pass. Medical marijuana helps.
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