Castrate Resistant Already - Darn!

At 50yrs old was diagnosed in Nov2014 - G9. Started Eligard Dec17, 2015. Urologist took me off Casodex January 2015. Another Urologist put me back on Casodex April 8, 2015 as his opinion was that I should be on both Casodex and Eligard - there was not a rise in PSA or any other reason to add Casodex back except an opinion that with G9 and aggressive form I should be on both.
My worse PSA documented was Dec.17,2014 at 179. Last PSA taken was May 21,2015 3.7 and Testosterone was undetectable.
Had bone scan / chest,ab,CT July 8. Called by oncologist as she is referring my to the urologist to have a stint put in, as the Kidney is showing signs of Hydronephrosis. The ureter is getting restricted by something that they cannot determine right now from the scans.
Further to this she informed me that my bone mets have increased - I only received basic information on the phone as I will have a full review of the scans this Monday and a review of the next direction for treatment. Due to the increase in bone mets, and the other mets have not decreased even with receiving the taxotere treatment early on, she says I am castrate resistant already and should start taking Xtandi. She prefers Xtandi over Zytiga as she prefers that I do not have Zytiga since I must also have Prednisone with it.
I am sure she will answer many of my questions, but am looking for opinions from this valued support group. Appreciate any feedback from all about my information above, and here are a few questions:
1) If I go on Xtandi, do I also continue the Eligard shots & Casodex? Cost for all this may be too large a burden for me? Xtandi is so expensive.
2) Is there any chance I should ask to stop the Casodex and switch to Firmagon to see if that will work for a while? I am doubtful with this path since I didn't get much time with Eligard.
3) Although I get some discomfort from a couple of the mets - the one on my scapula occasionally bothers me, and my hip bothers me somewhat, but usually go the day with using just one Ibuprofen so don't consider the pain real bad, and can sleep ok - pain does not wake me. When should I consider radiating the mets that give discomfort? Early on or wait until the pain is real bothersome? I have mets in hip, 2 ribs, 4 spine...and maybe more now that I don't know about until Monday?
4) I live in Canada, and found a clinical trial starting in London Ontario. This trial is for the F-18 scan to compare the normal scan to F-18 scan. I think along with this F-18 scan they will also do CTC blood testing. Should I enroll as an additional method for my doctors to see how the Xtandi is working with the better scan F-18 and the CTC blood test? I cannot get these done any other way then this clinical trial. It is trial NCT02121600
Sorry for the long message. We are quite saddened by this progression already, and I realize the 2nd line drugs have potential, but we are worried from the brief time on the first line treatment. I know there is also still another couple shots at chemo.
Thank you all.

When I went on Zytiga they switched me from Eligard and Casodex to Lupron every 4 months. And the Prednisone and have started Zometa for the bones. Ugh! Good luck.
Michael

Travling_guy,
My husband was diagnosed Feb. 2014 and was showing signs of castrate-resistant by October/November
2014. He has completed the 6 cycles of Taxotere and, while his PSA responded initially, by the end of
the 6 cycles it was starting to rise again. So, medonc had him tested for BCRA1/2 gene mutations as he would change to a chemo cocktail and a parp-inhibitor. Frank has not done Provenge as it is too costly and the benefits are somewhat epehmeral, in his opinion. Frank also decided not to see the doctors for a couple of months in order to recover from the chemo though he is still on Eligard and Zometa. We have appointment next week and will get results of gene testing and new PSA/Testosterone numbers. Probably, next step is Xtandi for him, also, though he is worried about increases in fatigue. We will irradiate his mets in the near future as the pain increases, especially the mets in his lower spine.
If you can get into the clinical trial, what a great thing to have more information about your mets, so you can zap as necessary. It is my impression that your PSA likely will fall as the cancer activity decreases/ceases in the irradiated mets.
Good luck and please keep us informed.
Lisa and Frank

Hello Travling Guy,

We have corresponded through this forum in the past and I always watch for your posts and updates. We are in the same age bracket, and I also had a high PSA over 100, at my diagnosis in the fall of 2013. My prostate cancer had also spread into both of my lungs by the time I was diagnosed. So I have been fighting the battle for almost two years now. Thankfully, my energy is intact and I have continued my full-time career.

Upon diagnosis, I immediately started with the LUPRON shots, which brought my PSA levels down into the lower decimals. That seemed like a miracle, considering my first PSA was over 100 when I got diagnosed. When the F.D.A. approved the new "chemo plan" last summer based on the CHAARTED clinical trials, then I did the six treatments of TAXOTERE (chemotherapy) infusions, over the course of 18 weeks, which brought my P.S.A. down a bit more to even lower decimal levels.

After the six TAXOTERE treatments, my oncologist was concerned that my testosterone levels were "spiking up" during the long-term four month LUPRON hormone shots. So then my oncologist decided to try using FIRMAGON shots instead of LUPRON shots, just to see if my PSA or testosterone would decline any further. I tried FIRMAGON for a couple of months, but had the painful and very swollen injection site reactions that so many others have experienced while on FIRMAGON. Despite the reactions at the injection sites, I was willing to stay on the FIRMAGON shots, but we didn't see any tremendous improvement in testosterone levels or PSA levels. I know some have experienced success with FIRMAGON and some oncologists recommend FIRMAGON over LUPRON shots. After we tried FIRMAGON shots, I have now been on monthly ZOLODEX shots the past 3 months, which works in a similar way as LUPRON. All of these various shots strive to achieve the same effect, which is to lower the testosterone level to the lowest level possible.

You can certainly try the other forms of hormone shots, just as I did. My oncologist did feel there was some merit in the idea of trying the different hormone shots, just in case we saw an improved response. I did feel a bit like a "lab rat" while switching from one shot to the other over the course of months, but I have now tried 3 of them, as you can see above. I was also put back on the CASODEX pills for a few months, but have now discontinued taking CASODEX. I did feel like trying the 3 different kinds of hormone shots over the course of a few months was SOMETHING worth trying. I can always return to LUPRON at any time, but the hormone shots have continued without fail since I was first diagnosed in 2013.

My oncologist has stated that the hormone shots will continue INDEFINITELY for someone who is in our situation, with the advanced stage of prostate cancer. The idea is that the shots continue to control SOME of the prostate cancer cells which remain sensitive to hormone deprivation. The alternative to the shots would be to have the surgery for physical castration, which some members of our forum have done. It is done on an outpatient basis.

I am also given PROLIA shots twice a year, to build back bone strength, since being on hormone shots leeches away calcium from our bones. Each shot of PROLIA lasts for a duration of 6 months.

Now that my six cycles of TAXOTERE chemotherapy were finished in the fall of 2014, I have entered a period of "watch and wait" --- or "wonder and worry", if you want to call it that instead. My P.S.A. has begun to "creep up" the past few months, bit by bit by bit. I do know that undergoing chemotherapy treatments some months ago DID help me, because adding the chemotherapy to the shots then brought my P.S.A. down to the lowest level it had ever been. Starting with just the shots, then adding chemotherapy after that, gave me a chance to see the impact that adding chemotherapy can achieve, at least in my case. Based on my P.S.A. tests, it was evident that the chemotherapy treatments were able to kill some additional cancer cells that the hormone shots could not kill.

My oncologist continues to have my P.S.A. and testosterone levels tested every 4 weeks, without fail. He is very proactive in his approach and he watches over my case very carefully. He occasionally orders a special blood test called C.T.C. ("Circulating Tumor Cells") and this is then sent to Mayo Clinic in Rochester, Minnesota, for a reading in their lab. My oncologist occasionally orders this special blood test, in addition to the P.S.A. test. I also had another series of scans this summer: lungs, pelvic scan, bone scan, and so forth.

I know each case is different, and chemotherapy can be a rough road. Fortunately, my side effects were fairly mild and I was able to go to work each day. Since then, other friends of mine have undergone chemotherapy treatments and I have become their "chemo coach", just providing friendship and moral support to them while they go through their treatments.

When the P.S.A. reaches a certain level in my case, the plan is to then start ZYTIGA or XTANDI. No matter what, the hormone shots would continue in addition to either ZYTIGA or XTANDI. My oncologist tends to favor ZYTIGA over XTANDI. Which one is better, I wonder ? Yes, both are quite expensive and these medications can cost around $5,000 per month for the prescription.

Our situations have many similarities. Please keep us informed on your situation and I will keep watching for your future posts and updates. I am very mindful of everything you are going through and everyone is here to support you. Hang in there, my Canadian friend, and keep facing forward !

Sent with my best,
Cyclone

Post Edited (ISU-CycloneFan) : 7/16/2015 6:06:18 PM (GMT-6)