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Posted 6/6/2018 8:41 AM (GMT 0)
First of all thank you to the people who post the questions and the ones who go out of their way to answer our questions. I wish I would have found this site at dx.

From what I read here I still have a chance at a cure. I want to do whatever it takes to fight for a cure. I was never offered triple play. What can I do to aggressively fight for a cure? If in the end the cure fails I know there are a lot of good drugs to contain the cancer. I just want to know I did everything possible to cure the cancer and live with the results.

They have offered Zytiga or chemo. Which one would give a better chance at a cure or should I go another direction?

Is a psa of 2.93 good after a couple months of adt?

Thank you again for all your help
Posted 6/6/2018 10:29 AM (GMT 0)
Welcome and sorry you are here. Where are you located? Which doctor is directing your treatment strategy? Is the three month Lupron from last November your only shot, or are you continuing on ADT? If so, for how long? I would hope to see your PSA undetectable due to the ADT at this point. Is the bone scan and ct the only scans you have had? When you say “they have offered” makes me wonder whether “they” have a clear strategy for curing a high risk situation like yours. I sense you are not confident about your doctors and their approach. Have you specifically discussed aggressive curative treatment with them?
Posted 6/6/2018 11:58 AM (GMT 0)
Welcome to the forum. Sorry you find yourself here but glad you found us. Hope we can help.

I have a few questions that might be helpful when the smart guys show up. I'm usually just the opening act around here.

You say you got a 3-month Lupron shot in November of 2017. How long does your doctor expect the Androgen Deprivation Therapy to continue?

Was April 2018 when you started or ended the radiation? I assume 44 was the number of sessions. Do you know how many Grays total?

How many doctors have you consulted? Where are you located (nearest big city) -- we might know of someone you could consult for an expert review of your case.

We spend a lot of time around here advising guys with low risk PCa not to rush off in all directions, demanding treatments with side effects worse than the disease. That's not as big a worry for us Gleason 9 types. It's hard to overtreat Gleason 9 disease. What sort of chemo have they talked about?
Posted 6/6/2018 12:56 PM (GMT 0)
Thank you very much for your response.

How can you tell I don't trust my providers?😁 It all started when I was a child(just kidding). I was first diagnosed in Portland Oregon as a 3+4=7. Then decided to go to Seattle Cancer Care Alliance. They did new imaging and diagnosed as a 4+5=9. I was not told of my new diagnosis until a month later. My experience so far does not lead me to believe they have my best interest at heart. Not they would do it purposely but they have lied to me and the person that will be taken over my care has not returned my calls. The providers that were looking at my lungs quit returning calls and I never received any explaination of their findings directly from them. Believe me I am a kind person and try to be as helpfully as possible.

I have had my my second shot of Lupton about a month ago and will continue for two more years.

They feel they were able to get all the cancer and I hope they are right. I just want to make sure I am doing everything I can to find the cure.

As far as the radiation levels the only thing I see on my paper work is the following "pelvis/prostate/Svs 350 cy x 10. I believe this is for a one week timeline.

This Friday will be my last session with the ebrt. I will be looking for a new provider that I can trust once I am back in Portland.

Thank you again and hopefully I am not confusing everyone more
Posted 6/6/2018 4:29 PM (GMT 0)
My daughter is an ER doc in Portland. She's no particular help with your prostate cancer but if you are ever planning to break your arm send me a note.
Posted 6/6/2018 4:39 PM (GMT 0)
Don, nothing to add, I’m not very knowledgeable on g9. Just want to say welcome to HW. The guys here are very knowledgeable and many others will surely respond soon.
Posted 6/6/2018 5:01 PM (GMT 0)
I am surprised that you are having so much trouble at SCCA...My surgeon was Bruce Dalkin urological oncologist...I can not say enough good things about him...one of the top 5 advanced cancer experts there, is Celeste Higano...who to my knowledge is/was mainly into research...having said that recent posts here indicate that she does take appointments...can not remember who managed to get an appointment...but the wait could be long...I personally would not dismiss SCCA too easily...granted you may{due to the volume of patients that any major medical center has} have to fight the beuracracy...but keep squeaking...be persistent but civil...its a tough world...it has to be navigated...Cancercare of America has great press...just not sure if its just a trailer and not the main feature...a cure with mets...seems a long shot to me...but I don't keep up with advance cancer breakthru...any advice here or other places of same...should be verified...its a smart place...with a few extremely knowledgeable folks...few is the operable word however...good luck...and yes whatever the case...you can have a long and productive life...but try not to obsess as that can cancel that long life into...one of constant angst...which would be a shame...
Posted 6/6/2018 5:06 PM (GMT 0)
Cancer Care Alliance in Seattle is among the best in the world. OHSU has a great reputation as well.

The drugs you are being offered (Zytiga or docetaxel) are offered to men who have been newly diagnosed with metastases. So either your doctors believe you actually have distant metastases, or they just said that to get insurance coverage. There is a fairly simple way to tell - compare the spots that showed up on your original bone scan/CT to the ones that are there now. If they have shrunk as a result of the hormone therapy you've been on, then they are metastases. If so, then there is no known cure, but it can be treated as a managed disease.

If they were not distant metastases, then chemo may slightly increase your odds of a cure. In one study, the 3-year survival went up from 89% to 93% when docetaxel was given after radiation. This is described here:

/pcnrv.blogspot.com/2016/08/docetaxel-with-primary-radiation.html

I would guess that Zytiga might have a similar effect, but there haven't been any studies published so far to confirm that.
Posted 6/6/2018 6:09 PM (GMT 0)
Welcome to HW, sorry you need to be here.

Just wanted to say welcome, you've gotten some great responses.

Hang in there and keep us updated on your progress,
Andrew
Posted 6/6/2018 6:36 PM (GMT 0)
Thank you for the responses.

The spots on my lungs have not grown or shrunk while on ADT and that is why they are thinking no cancer. Yes, they said they would need change wording to get me approved for Zytiga.

As far as SCCA that is why I went to them being a world class cancer center. They have always been nice and welcoming. I just think they are overloaded with patients.

I would prefer going on a drug(s) that would go after any cancer that might have been missed by the EBRT. Is it Zytiga, chemo or another drug? Or there is not a drug(s) that will do it?

Thank you so much again and very much appreciate your input.
Posted 6/7/2018 1:14 AM (GMT 0)
I just answered that - re-read my post.
Posted 6/8/2018 1:50 AM (GMT 0)
Don,

You have received good advice from others. Tall Allen has more information than you will ever find anywhere else. What I would add is that I learned... we/ you have to be your own advocate for your best interests. I found an excellent MO after a sub standard urologist at a good hospital. It happens. Don't settle for anything but what you can see as top notch care. As a G9, it is our full time job. Nothing more important. Good luck and stay positive.
Posted 6/8/2018 8:21 PM (GMT 0)
I agree

What I have learned just reading posts I am very greatfull to everyone who contributes here.

Today was my last EBRT treatment and I will now start Zytiga. Will have my first PSA test in six weeks.

Thank you again to everyone who contributes. I wish I had found this site when I was first diagnosed.
Posted 6/9/2018 4:07 AM (GMT 0)
I think now you can do BOTH chemo and Zytiga. The Zytiga will target any PC that is hormone sensitive and the chemo will attack any hormone insensitive cells that were missed or ignored by the Zytiga...
Posted 6/9/2018 5:00 AM (GMT 0)
Sorry u are here. You have been given great advise. My only comment is on the return phone calls. I have the same problem with 2 great hospitals in the LA area. I think they are just over loaded. I just keep calling and try to remain civil. Good luck on your journey.
Posted 6/9/2018 5:02 AM (GMT 0)
Hi Don,
Brenden Curti at Providence cancer center off 84 is phenomenal. I would also Highly reccomend Thomask Beer at Knight Cancer Center O.H.S.U. Not sure if the new facility is complete yet but it should be getting close. It is near where the tram leaves the waterfront.
Posted 6/10/2018 2:02 AM (GMT 0)
Thank you for the resources. We were thinking OSHU or Providence if SCCA did not work out. Oddly enough yesterday they all called me and scheduled appointments. I will be heading back to Seattle Monday. I feel much better and more informed about my treatment going forward than I was before.

Thanks again for all that contribute here you really put a lot of minds at ease with the positive stories and advise
Posted 6/11/2018 4:10 AM (GMT 0)

Hello Don3019,

Just wanted to welcome you here, and as you have already experienced first-hand, you have found a supportive BAND OF BROTHERS here.

You and I are in the same age range, as you will see from my treatment history shown below.

You mentioned some possible lung involvement, with scans that are keeping track of any changes that might occur, going forward.

I had a scattering of cancerous lung nodules scattered across both of my lungs, directly due to prostate cancer that had already spread by the time I was diagnosed. That was five years ago now, and I lead an active life.

Treatments have continued to help me, as they are now helping you.

Great news on your lower P.S.A. scores now that you have started the A.D.T. shots. My first P.S.A. at diagnosis was well over 100, and I started on A.D.T. shots immediately.

Within the first couple of months, the shots brought my P.S.A. down into single digits, which was a HUGE step forward in my treatments.

Bit by bit, the A.D.T. shots continued to "starve and strangle" more cancer cells, bringing my P.S.A. down even lower. That's where you are at right now ... and that's exactly what those A.D.T. shots do, Don3019 --- they literally "starve and strangle" those pesky cancer cells --- as your latest P.S.A. test already shows.

Over the past five years, since my diagnosis, I have pursued various treatments, whenever a new form of "attack" has been needed.

You mentioned that your doctors have recommended ZYTIGA. I have been on ZYTIGA for three years now. It's still a relatively new medication, in its first decade of use, since F.D.A. approval.

In my case, I started saving the empty ZYTIGA bottles at the end of each month, and began lining them up on a shelf, just as a way to mark my progress on ZYTIGA. I started with one empty bottle ... and now you can envision a long shelf with 36 little ZYTIGA bottles all lined up in a row ... representing the three years that ZYTIGA has helped me.

Members here have contributed to a thread about first-hand experiences with ZYTIGA --- all you need to do is to find the SEARCH BAR at the top of your computer screen and type in this thread title, as follows: ZYTIGA: OUR COLLECTIVE EXPERIENCES.

The thread will immediately appear on your search screen. Click on it, and you will read a wide variety of posts about ZYTIGA that will include authentic, first-hand experiences with ZYTIGA.

Sure, we can all read the brochure that comes with our first prescription bottle of ZYTIGA, but it's always helpful to read those first-hand experiences that are shared in the "one brother to another brother" style that characterizes the posts on this website. I think you will find the ZYTIGA thread informative, insightful, and helpful.

My own treatment history is shown at the bottom of this post, beneath my signature.

Each form of treatment has helped me maintain my health goals over the past five years. So, I want to share my encouragement with you.

Treatments have really helped me and it's evident that your treatments are already helping you! That's a tremendous feeling of reassurance, I know!

Wanted to write a few lines and send you my support and encouragement, as your treatments continue, Don3019.

Keep posting ~ visit here often ~ let us know how you're faring ~ the members here are here to help you!

Handshake, from across the miles,
CYCLONE ~ Iowa State University
Posted 9/13/2018 7:42 PM (GMT 0)

Naples said...
Don,

You have received good advice from others. Tall Allen has more information than you will ever find anywhere else. What I would add is that I learned... we/ you have to be your own advocate for your best interests. I found an excellent MO after a sub standard urologist at a good hospital. It happens. Don't settle for anything but what you can see as top notch care. As a G9, it is our full time job. Nothing more important. Good luck and stay positive.

You mentioned an excellent MO - is he/she in Naples? I live in SW FL and we are about the same age - our cancers have similar characteristics as well. My timeline is a few months ahead of yours - RP 6/2016, adjuvant RP began in 9/2016 and 1 year of ADT. Once the ADT ended my T level rebounded and all the side effect disappeared. Better yet my PSA was undetectable from 6/2016 until this week when my quarterly blood test showed a PSA of 0.4. Now...I’m looking at body scans, ADT and more. I have an appt up at Moffitt but would l8ke to have a local MO...Gene
Posted 9/18/2018 9:45 PM (GMT 0)
Shueswim,

I thought that I posted a response. Looks like it didn't take. Anyway... I split time between Naples and Chicago. I decided to go to Northwestern in Chicago. My MO is Dr. Maha Hussain. She is very well known for bladder and prostate cancer. I an very happy with her decision process and thorough attention to detail. She's a wonderful person too. I have a very aggressive cancer, 5+4 and she's very optimistic and has recently told me that we are working to cure. Not typical for my diagnosis.

Good luck to you.
Posted 9/19/2018 9:32 AM (GMT 0)
Naples looks like the Lupron is working pretty darn good for you. I'm pretty much in the same boat as you but no lymph nodes. How much longer will you be on Lupron? If you get a chance maybe we could get you to post over on ADT and SRT thread a lot of the guys on there would be interested in your treatment as you are about a yr ahead of a lot of guys on there. Thanks

Larry
Posted 9/19/2018 12:25 PM (GMT 0)
Yes...Lupron is evil in many ways but very effective. I have had two years of Lupron and will stop now and see what happens.
Posted 9/19/2018 1:02 PM (GMT 0)
Hi Don 3019,
I, like cyclone had lung Mets at diagnosis. My PSA was over 3200. My Gleason score was 7 at biopsy. I never got a second opinion. I honestly don’t care what my actual Gleason score is. 7 is fine by me. I was 42 at dx. I will be 55 in 2 months. I was told I would only live a year. I have 62 empty bottles of Zytiga. My last PSA was less 0.01 There is hope (real hope) that you will live many many years.
I have not had any chemotherapeutic treatment. I always said chemo would be my treatment of last resort. Apparently I was wrong in my decision process but it has worked out well for me. There are those who say I should have chemo now to beat cancer down further. I will pass. There are lots of good things out there to treat this stupid disease. There are more coming down the road all the time.
I believe if you had a shot at a cure they would have told you. The treatments being offered are palliative not curative.
There are studies that show Prostate removal with advanced disease can be beneficial. The thought process is that removing the mother ship and treating the metastasis can extend life. Prostate cancer is the only cancer where removing g the primary cancer is not standard practice. I have asked adult having my Prostate removed and after much thought opted to stay the course I have plotted.
I have been on Lupron since my diagnosis. Over the years my body has adjusted to a new normal. I can still make love with my wife. For the las 2 years I have not required E.D. Medication. Prostatectomy would end that ability.
Life is about quality, not quantity. I believe the course I travel will give me both. It has been 147 months since my diagnosis.
Become your own advocate. Do what is best for you. Insist upon the highest standard of care. Do not take “no” for an answer. Be well. Stay positive. Live each day as if it was your last. Todd
Posted 9/20/2018 4:45 AM (GMT 0)
Hi Don, sorry you had to join this club and the G9 crew. Sounds like you might be in luck if you dodged a bullet with the Mets. Let’s hope it stays that way. My personal thought on chemo was that it only added a small 5% benefit but I was good with that. I like to keep adding up the percentages to the highest point I could. All of the side effects suck but we grind through and just keep on moving. Todd 1963 is a great example. As everyone has said, be your own advocate and become an expert on your disease. That helps you deal with the journey. Good luck and keep us posted. Take care. -JR
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