Hi. I started my adventure a year ago today, 8/31/2017. I guess it's time to say hello. I'll throw down my numbers. Maybe it will make some of you feel better about your numbers.
Last summer I started to have some old-man urinary symptoms. I was 51, so they seemed par for the course. I was feeling a bit run down, but nothing alarming. Then I saw blood in my urine. A lot. With clots. Doctor quickly ruled out all the not-bad things and sent me for a CT scan. He stalled for a couple days before he had to give me the news. Bulky tumor, spreading up the bladder causing hydronephrosis on one side. Evidence of bone mets and enlarged lymph nodes. PSA came back at 634. ALP 384.
Went to see a medical oncologist the next day. No need for a biopsy to make the diagnosis. Started Lupron and Zometa that day. Took Casodex for 2 weeks, then started Zytiga. Symptoms were pretty much gone within a week and felt really good again. Also met with a palliative care doctor at the practice. No one really gave me any time estimates, but it was implied that I should get my affairs in order and enjoy my time.
Soon I got to enjoy a biopsy. Gleason 10 in all 12 cores. Bone scan was lit up everywhere. My MO was clearly shaken up by it. Foundation One genetic test had nothing useful to add. I'm the worst case she's seen.
They set up a consultation with a MO at Dana-Farber. He recommended doing a course of Docetaxel chemo. That sounded awful. Isn't Zytiga just as good? Lots of discussions back and forth. At time time I was due for my second Lupron shot it looked like my PSA might have stalled at 92 so I went for the chemo. (And stayed on Zytiga) Did 6 rounds. Lost all my brown hair, but a lot of the gray stayed. Suddenly looked 30 years older. The chemo was unpleasant, but it was not nearly as awful as I'd feared. By the end the fatigue had caught up to me and I was glad it was over. At the end my PSA was down to 3.4, and continued to drop a couple more months to 1.4 in June. It has ticked up by 0.2 each month to 1.8 now. Hopefully it will level off. I would not have believed it could have gotten this low. Even as it has gone up, my ALP continued to drop to 61.
Had a second CT scan in April. Prostate described as "unremarkable". Only a couple enlarged nodes. Hydronephrosis resolved. Bone scan showed improvement. Hard to judge what's mets and what's healing bone at that time.
Out of the blue I got a call from the MO at Dana-Farber in June. Said because I had done so well he wanted to talk about some other things. Had an MRI which showed things back in their proper places and only a couple enlarged nodes. He had me talk with a surgeon and a radiologist about primary treatments. They all described my response as remarkable. They described their treatments in detail, then said they couldn't recommend them. But if I asked for them they wouldn't refuse to do them. Not sure what I'm supposed to make of that. Do I need to read between the lines? I'll go back and talk with him again in September. Hopefully there will be some clarity in recommendations. Hopefully my PSA will level off.
So, here I am a year later. I feel great. My hair has mostly grown back. I've gone on three nice trips. My kids graduate from college and high school next year. It doesn't seem likely that I'll have to miss that. Strange to say that I've never been happier. So much that I don't have to worry about anymore.
Reading this site has been encouraging. I don't think I'm going to be around for a long time, but I'm going to do everything I can. Thanks for being there.
This is the story so far.
Written by
RustyDakota
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There is no clear yes-or-no to the kind of debulking you discussed with a surgeon and RO. No one really knows if there is a benefit, and, if so, in whom. It's the subject of some randomized clinical trials. It's really up to you - do you want to risk uncertain benefit at the cost of side effects of radical therapy? here's what the studies so far tell us and don't tell us:
I went into the meeting totally opposed to the idea, armed with all the charts and data. But, they weren't pushing it or recommending it or even really suggesting it. It made the whole situation seem strange - probably due to ethical constraints.
The one thing that sounded appealing was the possibility of preventing a return of the tumor that closed the ureter. Bad as it is to end up like this, it would be worse with a tube out my back.
I think I would rule out surgery. Perhaps I'd think about radiation as part of the overall strategy. e.g. after Provenge when that time comes. Hopefully it's too soon to decide anything yet.
Thanks for sharing your story, glad you found us. Many of us here have similar stories. I had an initial PSA of 463, Alk Phos of 605 bone scan that looked like a major city at night.
So far, you've responded well to treatment, hopefully that continues. So you are currently on Zytiga?
Sounds like they haven't told you the treatments that they don't recommend?
Glad you have found happiness, I feel the same way. I don't think I've ever been happier in my life. I do have sadness about not having a future (although nobody really does anyway). But there is also a big burden lifted that we don't have to worry about the future, just the short term. You can focus on living in the present moment where I believe true happiness is found.
Good luck with your treatments and keep us posted.
You might want to consider genetic testing to see if there is a targeted treatment available for you. There's also Xofigo which works well on bone mets. Taxotere chemo will often work a second time if it worked the first time. Then there is second-line chemo Jevtana if that fails. LU-177 is promising, in trials in the U.S. and already available in Germany.
Just a few options to consider and discuss with your doctor.
I just try to have a rough idea about what the next step would be. It helps me be a little more at ease. There will be time to make those decisions when they are needed. I don't dwell on it or worry about it. Just have to take one treatment decision at a time.
Its so nice to hear that someone with very high gleason score is responding well to treatment! Good job! I do hope and pray that a similar kind of response happens with my husband as well who is currently on zytiga, eligard and xgeva.
Btw, just to clarify, did you undergo docetaxel chemo while on zytiga or did you finish zytiga before docetaxel chemo?
I have been on Zytiga continuously. I started the chemo when I went in for my second Lupron shot, 3 months after the first one. I was the first person to get early Zytiga at my "primary" MO's office. If I had gone to Dana-Farber first I would have been given Docetaxel first and then Zytiga afterward. No one can say if doing both together is better or worse.
Ohhhhh Rusty.... the feeling I get when any of you have to be here..... hurts my mind, body and soul but when one of you are soooo young...I gasp. Your story is amazing thus far and I'll hope and wish and pray that it gets more amazing for you. I'm so happy for you.
Good tude dude! Now to clear things up, you'll be around for a very long time. You will be able to play and spoil your high school kid's children. But of course live and enjoy every day that comes along. And don't forget to laugh your ass off!!! That brings up a story about a guy who was born with a brass belly button. For years he wondered about it until one day he decided to unscrew it and his ass fell off.
You'd be the luckiest guy in the world to come back from the brink of not being here.
I hope your luck lasts.
I had last chemo 2 days ago, and cycled out to have lunch at a cafe and read newspapers, and then cycled another 10km to a museum where I had a cup of tea and a freon, and a sit and watch of a screen with info about my dear countries past, and near an exhibit of of Australia's best dinosaur skeleton,
The creature showed me how all things come and go, and it was old and so was I.
But on leaving the museum cafe, a lady chased me out and I'd met her with her husband
three weeks ago in the next chair along, where he'd been getting chemo, for some blood disease, and he was only 35, maybe 40. We'd chatted, and she'd remembered me.
But he'd since fallen over at home and broken bones around an eye socket, and that meant he went to hospital, and because his white blood cells were very low, he got an infection that spread to lungs and the docs could not save him so he died a week ago.
The lady was all tears, and for 15 minutes I chatted, but reassured her that I could see her having a bright future because she cared, and was responsive, and had I been 35, not 71, I'd have tried to befriend her, and nature would have taken a different course.
The fact is there are so many ways things can happen with consequences we have no control over, and sometime Lady Luck smiles, and grants us a reprieve from the dire predictions of Aunty Destiny.
She happened to be in the cafe to meet ppl to arrange a wake for her husband, but she would survive, with her 2 yo son, because she knew there were more ppl of good will in this world than those we constantly hear about elsewhere.
My bicycle takes me around this town where I never know when a fine human interface occurs, and although I never was successful enough to marry well or have kids, life still gives me moments of wonderment.
I rode the 10km home, being extra careful not to have an accident, my white cells went real low after first chemo, 4.0 to 0.17, and I need shots of Nulasta to boost white cells, but there are side effects from that I was told, but they have not happened yet.
All anyone can do is live their life, so I hope you flourish into a new future,
Hi I too got PC at an early age. 3 years ago I had Gleason 9 in 10/11. And clear signs it had escaped into the body. I too had chemo. Have you considered combining your treatment with Statin and Metformin?. Are your doc supporting RP you should look into it too. New studies indicate RP in some cases could have effects on future Mets in patients like us where the disease has already spread and where our previous treatment had an effect.
That was an excellent lecture and thank you for sharing. There are so many men not aware of what research hospitals and doctors are willing to offer. It's very unfortunate so many general oncologists and urologist share in the same thought that this disease is a one size fits all treatment protocol. Depending on your specific case different treatment options may be available to you. This very thing saved my life and everything you are seeing and hearing in this video is true. Times are changing and if your doctor isn't changing with them it's up to you to find one that is.
Hi Rusty great inspirational story. My numbers were very similar and was given Zytiga as First line of treatments. My PSA is undetectable in one month and all in all not bad side effects. It will be 7 months September 27th. My MO is very pleased with my results as am I . the quality of life is very different now but life is the key word here . Thanks for sharing your story Brother. Never give up never surrender. Leo
Rusty I wish you more health and you have a great team on your side. I agree with your first assessment about treating the primary tumor. The oldest and most common response is that it is cost and risk for no benefit. The doctors are well aware of the risk and thus cannot recommend it. I am pleased that they see your response as one which allows the option to be raised. You are also correct that radiation may well have the benefit of reducing the chance of urinary issues in the future, or reducing the severity of those issues. Your youth and overall health allow them to consider this. You have clearly educated yourself, and have been educated by your medical team. It is true that you would be a trial of "one" for this treatment without clear research to support a treatment. I know what I would choose.
Surviving the first round with good results is not a given. Thank your stars for today. Sounds like you’re in the right direction.. No cookie cutter mold to fit us all. I was 53 with dx 3-15 . I relate to aging 30 yrs overnight.. you’ll fight this and with help from above you’ll be here for years. Not pain free or symptomless but still here to the smell the roses.. We are in it until the wheels fall off. Anything that takes our minds off of pc should be practiced daily. Speedy recovery and continued positive results..
I feel like a "fast track to stage 4" kind of guy also...but it seems like you have slowed down the beast. I did Chemo pretty quickly and PROVENGE...and started Xtandi at the same time and it "seems" to be "holding". ALL the best and good luck ! ! !
My husband has a similar story and was diagnosed the same day as you. He had radiation and six rounds of doxcetaxel. I have never heard of anyone getting zytiga and chemo at the same time. This is what I had requested. Are you in the states? Has zytiga caused weight gain? Thank you for any info you might have. Going for new scans soon.
I have put on a few pounds, but I had lost a few before being diagnosed. Probably only up 5 pounds or so overall. I've always been slim, but now I have a bit of a spare tire to go with skinnier arms and legs. I don't know how much of that to attribute to the ADT, and how much is from enjoying life.
As far as getting Zytiga and chemo at the same time, it was due to different doctors with different opinions. The MO at Dana-Farber said that they do use both sometimes for patients that can tolerate the combined side effects. I don't think anyone can tell you with certainty whether they work better together. I think there are some studies ongoing.
I see Dr. Choudhury there. I don't know how he compares to anyone else there, but I'll give him the credit for bringing me back from the brink.
For "routine" care like Lupron shots and chemo infusions I have continued to see Dr. Lin at Harvard Vanguard. Everyone is so nice there and it is the same network as my PCP so it is very easy to keep everything coordinated. But they have less experience there with really bad cases like mine.
I have kept in touch with Dr. Choudhury throughout, and will have a third visit with him in a couple weeks. Eventually I expect I'll need to transfer fully to DFCI.
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