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Posted 8/4/2016 1:59 PM (GMT -5)
I haven't been on this side for quite a while so I think I will need to do an update so any of you can comment.

11/10/2010 - PSA 2.0 - biopsy - 5 of 12 cores Gleason score 4+3 = 7
01/05/2011 - Da Vinci prostatectomy Gleason score 5 + 4 = 9
01/08/2011 - develop ileuses, drainage around foley catheter
01/11/2011 - surgery for ileuses
02/02/2011 - surgery for leakage, stents inserted into bladder
02/16/2011 - catheter removed, total incontinence, impotence
03/16/2011 - stents removed
06/1/2011 - PSA .5 – start Lupron and Casodex
09/0/2011 – PSA <0.1 removed from Lupron due to suicidal tendencies
11/30/2011 – surgery for penile prosthesis, incontinence down to 1 pad a day
11/19/2012 – PSA 2.40 – removed from Casodex to see if it is the cause of rise in PSA
01/30/2013 – PSA 43.60
02/7/2013 – PSA 48.4 – bone scan reveals extensive bone mets – hip, pelvis, spine, ribs, skull. Placed on Lupron with continued Casodex. Lupron tolerated this time.
02/15/2013 – radiation on hip, PSA drops to 1.16
09/03/2013 – PSA 1.62
10/07/2013 – PSA 2.77
11/04/2013 – PSA 5.33
12/21/2013 – PSA 13.6
12/26/2013 – New bone scan shows 3 new mets. PROVENGE treatment started.
01/27/2014 – PROVENGE treatment has been completed. PSA drops to 7.5
02/27/2014 - PSA drops to 5.04
03/26/2014 – PSA 5.75
04/26/2014 – PSA – 7.750
05/24/2014 – Doc calls. uh oh! Mets growing with new babies. Crap! Doc mentions adding DES to the mix. I’m thinking that’s not enough. We need to get aggressive with it. A low PSA means nothing when it comes to my cancer.
5/27/2014 - PSA 9.26, DES started
06/20/2014 – PSA 6.26 – symptoms - fatigue
7/22/2014 – PSA 4.16 – symptoms – fatigue, some weakness and pain
8/18/2014 – PSA 5.50 - symptoms - fatigue, weakness, some pain
9/11/2014 – PSA 4.35 – symptoms – fatigue, weakness, some pain
9/15/2014 – Bone scan reveals more mets. Cancer grows despite low PSA
10/9/2014 – PSA 8.4 – symptoms – fatigue, weakness, some pain, depression
11/07/2014 – Received the latest report on my PSA, up from 8.4 to 17.9. Doubling time of one month.
11/9/2014 – broke right foot while at beach. I was not doing anything to cause it, just squatting down. I feel the break is due to the cancer. I will find out soon.
11/14/2014 – I am started on Xtandi. My current PSA is 20.9
12/11/2014 – PSA 9.6, down from 20.9. More pain in pelvis and neck.
01/09/2015 – PSA 5.79. Bone scan shows possible healing.
02/09/2015 – PSA 4.4. Have been put on a Fentanyl patch which I hate even though my pain has subsided with the radiation to the pelvis.
03/02/2015 – PSA 4.28 – Will have new bone scan before end of month then start Xofigo.
04/20/2015 – PSA 5.27 – Last bone scan showed no progression. Effects of Xtandi wearing me down. I was off it for a week while on vacation so my energy level would rise which it did. But after just 3 days back on it, the fatigue, muscle and joint aches, and an increase in bone pain returned. I will be starting Xofigo on the 22nd.
04/30/2015 – PSA drops from 5.27 to 4.04. Yea!!! I did not expect it seeing I was off the drug for a week. I had my first shot of Xofigo. It made feel really lousy for several days and my energy level has dropped even more.
5/28/2015 – PSA has dropped from 4.04 to 3.71. This is the lowest it has been since September 2013. So the Xofigo, Xtandi, and Lupron seem to be doing the trick.
6/22/2015 – PSA down from 4.04 to 2.82. That’s the lowest its been since October 2013. But the combination of the Xtandi and Xofigo is kicking my butt. The fatigue can be overwhelming at times. And I still have pain. I was hoping the Xofigo would have reduced the pain but it hasn’t. If anything it is worse. Still, my PSA numbers are headed in the right direction. With me moving my dose of Xtandi from night to morning, I am waking up with more energy. I do not fall back to sleep and my eyes are not so blurry that I cannot read.
7/16/2015 – PSA down to 2.70. I still deal with pain.
8/28/2015 – PSA down to 2.08, the lowest it’s been since September 2013. I still am taking Xtandi, Lupron, Xgeva, and Xofigo. Xofigo really kicks my butt. I have also had my Fentanyl patch raised to 75 mcg and that added to this past week’s illness.
9/14/2015 – PSA went up to 2.49. At least it was a small increase.
9/20/2015 – I got my last shot of Xofigo and I am really nauseous, more than I have ever been. I am dropping weight because I do not want to eat and when I do, I can only eat around half of what I normally eat. But I am a bit overweight so the loss of the weight can be looked at as a good thing. I will be glad when I finally am over all the side effects of the Xofigo. I go November 11th for a bone scan. Only then will I know if it did any good.
10/12/2015 – PSA went up to 2.54, just a .05 rise so it’s okay.
11/11/2015 – Found out Monday my PSA has dropped to 2.34 so any upward movement has been negated.
12/4/2015 – Bone scan is very dark. My oncologist said what I was seeing was bone remodeling which confused me. Of course it was due to the Xofigo but when I asked him if it had shrunk the tumors any, he said no. When I asked if it was going to sometime in the future, he said hopefully. In other works, my bones around the tumors are being remodeled while the tumors remain the same. That does not make sense to me. Why remodel good bone? My PSA has risen a bit to 2.64, a .3 rise. It seems to be going round and round as to how it is reacting to the Xtandi but I must say, I have had stable bone mets for nearly a year now. Reading back on my experience with the Xofigo, even though it did not help with the bone pain, it did contribute to the downward move of my PSA. When I started it, it was 4.04, now it is 2.34, so it has allowed it to decrease over 1.7 points. That is great but I wonder if it was worth it due to the side effects I have had to deal with from it.
01/05/2016 – PSA has risen to 3.11. It is not a significant increase but it is an increase nonetheless. My PSA is still too low to raise any alarm with the doctor when I go to see him on the fourteenth but it is something I will definitely be watching.
02/02/2016 – My PSA has risen another point to 4.11. It has nearly doubled in the last two months. I am not ready to sound the alarm but it definitely has me concerned. I am not sure when I should say it’s now time to go to the next level of treatment. My PSA was around 20 when I started Xtandi and with it combined with Xofigo, it was brought down to 2.34.
2/29/2016 – PSA up to 5.42. Once again, it has risen. This time it rose 1.06. It is just steady upward move.
3/28/2016 – PSA up to 7.05. Now let’s see what the bone/CT scan shows.
4/08/2016 – Had the bone/CT scan. I got a copy of the scans but not the review of them. The CT scan scares me but I do not know how to read it so I know better than to talk about it. It is going to be a long week. Oh by the way, I have now lost 50 pounds.
4/15/2016 – Just got back from y oncologists office. For the most part it was a positive visit. The CT scan showed nothing which is great. The bone scan looked better except there was a new small spot on a cervical vertebra and on my left femur. He asked me if I had been experiencing any pain in my neck and I said yes but that I attributed to stress. He asked if I had been experiencing any headaches and I mentioned the pain I experienced my left eye and the stabbing pain on the left side of my head. I told him it was not a common occurrence but nonetheless, I get to get an MRI next Friday on my brain and neck and I will also have to see a ophthalmologist. I hate it. I feel I might again be blowing something that is nothing out of perspective. But it was his decision. I also had my Fentanyl increased to where I can change it every 2 days instead of every 3 days. He has decided to put me on Zytiga with Prednisone. He said the Prednisone should give me more energy and increase my appetite. He said the side effect of Zytiga are much less that those of Xtandi and that the Prednisone should also lower my need for pain medication. So there are a lot of positive things coming my way.
4/27/2016 – I got the results of the MRI and it is as I expected, there was nothing unusual. Same for the examination by the ophthalmologist. I got the latest PSA number and it is 8.70, a rise of nearly 1.70 points. That is a bigger jump than previously but could be due to the fact I had stopped the Xtandi before starting the Zytiga. Well I am going on a road trip while I still feel healthy enough. Until later.
6/22/2016 – My PSA has risen to 13.77, a 5.01 rise since my last on at the end of April. Zytiga does not seem to be working.
7/20/2016 – Received the results of my latest blood test. My PSA has risen to 18.12, a rise of 4.4. When I started Zytiga, my PSA was 8.70, a change of 9.42 so since May, it has more than doubled. The first rise in my PSA was brushed off by my oncologist as just a “bump” common with Zytiga. That really bothered me for in my reading about Zytiga, the PSA drops then there might be a bump later on. And his comment that Zytiga was going to be a breeze has not happened. I have had nausea, a very dry mouth, I still have no appetite.
8/04/2016 – Due to some really bad pain, I have had another MRI. I really did not want it because I felt it would be like all the rest and show no change but this time was different, I have two bulging disks. They are around the vertebra that has cancer so they cannot do anything surgically, not that I wanted surgery. So now my Fentanyl has been upped to 100 mcg.

Okay, for any of you who have had the patience to read my story, I am thinking my next treatment is going to be Taxotere and I have been fearing this chemo since I was first diagnosed stage 4. I feel I've been through the wringer with the "good" drugs for Prostate cancer. I am having a hard time deciding if I want to go through with it. I do not like thinking I am being a quitter but as I sit here in pain while typing this, it is hard to remain hopeful.
To look at me, I am the picture of health. My weight is now around 155 and people are all the time commenting on how good I look. I tell them I am like a used car on a used car lot. I look great on the outside but don't look under the hood.
Anyway, I am looking for those who have been through Taxotere who will tell me their experience with the drug.
God's blessing, Craig
Posted 8/4/2016 3:59 PM (GMT -5)

JCRush said...
...and people are all the time commenting on how good I look. I tell them I am like a used car on a used car lot. I look great on the outside but don't look under the hood.


Great saying.

Your question about Taxotere is outside of my experience so I can't add value to the thread, but just wanted to encourage you, after reading your story, and to wish God's blessings upon you. I hope you find relief for your pain.
Posted 8/4/2016 5:52 PM (GMT -5)
Craig,

You've been through quite a lot, I'm sorry. Is there a reason you didn't do Taxotere earlier? For awhile now, we've known that Taxotere is one of the first things to do when significant mets are discovered, rather than the last. I'm wondering if there were possible medical reasons - e.g., immune suppression, comorbidities that might preclude it? If no medical exclusions, it's one of the best things you can do to relieve pain and improve your quality of life.

Zapping the bone mets with 1-3 doses of SBRT can relieve a lot of pain sometimes.

I hope you are taking Zometa + Celebrex too.

What clinical trials have you been discussing?

- Allen
Posted 8/4/2016 6:07 PM (GMT -5)
Dear JCRush,

Really want to reach out to you right now, my Healing Well brother. I read your post and I can tell you have "treatment fatigue" right now ... you've been a soldier, out in the field of battle, and you are feeling battle weary right now. You've pursued many treatments over the course of time ... surgery, radiation, Xtandi, Zytiga, Lupron hormone shots ... an entire "laundry list" of treatments. Speaking of a laundry list, you've been put through the WRINGER --- like the wringer that my great-grandma had on her old-fashioned Maytag washing machine, back in the day !

I can tell that RIGHT now, you need some encouragement, JCRush ... you're at a crossroads, aren't you? I've stood right there ... right at that very crossroads where you stand today ... the question at the crossroads becomes whether or not to ... "do chemo, or not to do chemo .. THAT is the question!" Sincere apologies to William Shakespeare ...

The "early chemo plan" was presented to me in the late summer of 2014, and I needed to make a decision. I was in my 40s, diagnosed with advanced prostate cancer that had already spread and infiltrated both of my lungs. I'm a school teacher and the school year was just about to begin. A true lifeline, in the form of the most compassionate doctor I had ever met, changed everything for me ... a medical oncologist ... he also treats my father, who is also a prostate cancer patient.

I met my oncologist for the very first time on that August day ... he said he would lead me through the newly adopted "early chemo plan" and that he would watch over me like a devoted watchdog. I stood at that crossroads where you stood ... I did a lot of soul-searching and went out for late-night walks. I relied on family, friends, and faith in my decision ... and finally, it just came to me in these words, "Go BIG, or Go HOME" ... I started chemo THAT VERY WEEK ! I felt like I was caught in a whirlwind, trying to make that decision ... but then came the moment of clarity ... I NEEDED something new in my treatment plan and I needed to get started, sooner rather than later ...

I honestly knew I needed another powerful weapon to attack my cancer. After starting on the ADT hormone shots, my PSA had reached a plateau ... the nadir point ... it wasn't going any lower ... in fact, it started rising. I now know that chemotherapy DOES have the ability to attack cancer cells that other forms of treatment can't ... those stubborn, resistant cancer cells. That's an important factor to consider ...

The timing was ironic ... we got started on the first chemo treatment, and I met my new elementary school students that same week ... my oncologist was very concerned about contagious illnesses and germs since I worked in a busy elementary school with 800 youngsters in my school building that year and "Back To School" was in full swing ... I started the chemo treatments in August on a blazing hot summer day and finished the last treatment just before Thanksgiving, with a few snowflakes falling down as I drove home from the clinic after the last treatment ... summer had passed into fall ... but frankly, the series of chemo treatments went more quickly than I imagined, when all was said and done.

The most important thing ... the chemo treatments DID help me ... my P.S.A. began creeping down, lower and lower, with each subsequent treatment. I took good care of myself during my chemo treatments, in terms of healthy living habits ... I went to work every single day ... I exercised ... I kept up with my school kids on the school playground every day ... and I kept up with my family, friends, and social events.

I would heartily recommend that you talk to a trusted, top-notch oncologist ... seek out the very best one you can find, as I realize you have been through the wringer, in terms of past treatments.

I wanted to reach out to you, because I realize that your case has complexities, and my case does, as well. It's not an easy pathway that you have walked, and I want to encourage you right now, to keep facing forward and to carefully consult with your medical team. You deserve the very best right now ... some trusted and true medical experts, working together with you ...

Along the way, I added an extra level of expertise to my medical team. I have traveled to Mayo Clinic in Rochester, Minnesota, in the interest of doing everything I can to make certain that I have left no stone unturned in my treatment decisions. Along the way, have you sought out a second opinion ? You might want to consider consulting with a UROLOGY ONCOLOGIST, who specializes in advanced cases with complexities. Urology oncologist are usually found at the larger medical facilities located around the country.

We have many fellows here who have undergone chemotherapy treatments. We informally call ourselves "The Chemo Club" and we have members right here who are undergoing chemo treatments, as we speak. I underwent chemo treatments two years ago, and looking back, I know that those treatments helped carry me forward to this point in time. I am currently setting up my classroom for another year of school teaching, and have gratitude every day for being carried forward this far. After chemo treatments were finished up, I went on ZYTIGA a year ago, and that has helped me, as well.

I just consulted with my primary oncologist yesterday, after returning from Mayo Clinic last week, with a P.S.A. that registered below 0.05, at the present time. It's been two full years ago that I did my chemo treatments, and I feel that they have continued to help me, ever since. I have several close friends who share my same diagnosis, and they have ALSO pursued chemo treatments. It's becoming much more common, after the release of the STAMPEDE clinical trial and the CHAARTED clinical trial ... trials which showed the potential impact that chemo treatments can have on survival ...

A couple of my friends are actually going through chemo treatments for a SECOND SERIES OF TREATMENTS right now, and having success yet again. That's encouraging news --- doctors are finding "new horizons" in implementing chemo treatments, now that they have moved forward as a "upfront" treatment option for advanced cases. Some doctors are finding that fellows can re-introduce medications like XTANDI and ZYTIGA after a series of chemo treatments is finished.

We also have members here whose doctors have created specialized "chemo cocktail" blends, to suit the individual needs of the patient ... adding things such as carboplatin to "textbook chemo" formulations. These are things that an expert oncologist could discuss with you.

JCRush --- I just want to encourage you, in every way that I possibly can. I know you have experienced some setbacks in your treatments, mixed in with the successes you have had over time in your treatments.

With all the treatment angles you HAVE pursued so far, it does seem that chemotherapy treatments remain an UNEXPLORED treatment option for you ... a potentially untapped RESOURCE ... a weapon of attack that is still waiting for you in the arsenal.

I do feel that you owe it to yourself to consult with an oncologist and explore the possibilities of what chemo treatments could do for you. Many of us here have completed chemo treatments quite successfully ... while keeping up with our usual activities while going through the treatments.

Best of all ... and this can help you IMMEDIATELY ... quite a few of us here have banded TOGETHER and formed a special thread to describe our collective experiences during chemotherapy treatments. We worked together over time, and wrote it in "one brother to another brother" style to help other fellows learn more about the "chemo experiences" that we have experienced. It is an ongoing thread ... current and updated.

To find that thread, simply go to the top of your screen and type in this thread title into the SEARCH BAR in the right-hand upper corner of your screen: "Taxotere Side Effects" is the title of the thread that I recommend to you, as a way to become more informed about what chemotherapy treatments truly entail ... and some easy ways to minimize the side effects. I was fortunate and had very MILD side effects, and I felt fortunate ... please read through that topic thread ... it would calm a lot of your fears about undergoing chemo treatments ...

Watching my P.S.A. creep down with each subsequent chemo treatment was VERY encouraging, I must say ... I was in the first "wave" of fellows treated with the newly adopted "early chemo plan" ... and watched the P.S.A. go down lower every time I returned for another chemo infusion ... it's important for me to share that experience with you, I feel ...

I'm here to encourage you and support you, as you look ahead, JCRush. We all need encouragement, support, and HOPE along the way ... and that's what I'm sending your way with this message.

Keep in touch --- we care --- we're right here for you --- and one more thing, JCRush ... I'll do anything in my power to advise you and support you along the way, if you decide to pursue a series of chemo treatments.

Sent with my very best to you, from "one brother to another brother" ~ stay strong ~ stay determined ~ keep facing forward ~

"Cyclone Team Fan" ~ Iowa State University
Posted 8/4/2016 9:05 PM (GMT -5)
Hi Craig. Man you have been through the treatment ringer, but as CycloneFan stated, chemo is just another grind and can help you greatly. I just had round #2 and after the chemo crash days are over, it is not really any worse than ADT. Maybe just some extra fatigue. If my hair didn't fall out, you wouldn't know I was having chemo. I wish you all the luck and success in your decision and future treatment. Keep us posted. Take care. -JR
Posted 8/5/2016 8:32 AM (GMT -5)
Hi Craig,
You really have endured a lot since your diagnosis and not without many complications along the way. I cannot begin to imagine all that you have been through. Its seems that your question centers around your consideration of Taxotere. While, it is no walk in the park, based upon what you have already been through it seems like you are the type of person who can endure it. I started my treatment with taxotere and had a whole host of side effects, all of which I have recovered from. It is very taxing on the body but the side effects really only last a few days, with smaller side effects that may linger a little longer. When you begin your treatment plan you will most likely have blood work drawn to see if you are healthy enough to start treatment, and, if so, you will have blood work prior to each treatment. If your blood counts are low you may be prescribed either neulasta or neupogen. This will help build your blood counts so that you may tolerate the treatment better.

Cyclone has really covered a lot of territory so I wont regurgitate what he has already covered. Just want to let you know that my heart goes out to you and I wish you the best.
Posted 8/5/2016 8:52 AM (GMT -5)
Craig, what a dossier! Have to admire your perseverance. TA mentioned spot radiation to augment the chemo. That is what I did. In May 16, I had spinal mets that were causing a good deal of pain. Five minor treatments with radiation stopped it immediately. My oncologist then suggested chemo. I will admit that, for me , the chemo has not been a walk in the park. I just finished number five and cannot wait to get the last one under my belt.

I am also talking to my onco about the NCI Match trial. His practice is a participant in the trial but I will need to complete the chemo first. The trial uses DNA analysis to match your cancer to an immunotherapy (if one exists). You may want to investigate it too.

http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=773118

Don
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