A year ago today, still waiting for some good news.

[TenscTexan]

I found this website about 3 months ago, joined about a month later. I have benefited from the knowledge I've learned about my future and I enjoy some of the bantering that goes on. It is also nice to have friends supporting each other that don't ask you "Are you okay" every time you get a few steps behind.

I've been waiting for my MO to tell me something has worked for a year now. A year ago today I had my biopsy which diagnosed me with mPC, originally thought to be multiple myloma because an MRI for back pain had shown so many bone mets on my spine they never thought it could be PC. At the time, it was the best case scenario, we can shut it down.

Now in the right direction, immediately start Lupron and Docetaxel chemo. After about the 4th chemo treatment the MO told me my PSA wasn't responding like it should and wasn't dropping as low as he would like, and had actually gone up since the last PSA test. I asked if surgical castration would be an option to the Lupron, as maybe it wasn't working well on me, he said he wouldn't try to talk me out of it but it would have to wait until 6 weeks after chemo, so late September. Just after saying goodbye to the boys, I went back for all my rescans and tests to compare. The chemo worked, about 60-70 of the bone mets gone, most remaining were in the lower spine area. PSA at 1.0. (October)

Went back for a follow up in January, PSA 6.71, MO says it's gonna get ya. I then go back for all new scans to see where its growing. A couple spots that were there on my lower spine got bigger, no new growth. Immediately start Zytiga.

I've been on Zytiga for 50 days, I go back in for testing in 2 weeks. What are my odds the Zytiga is working? I'd really like to hear what I've heard from so many of you guys that your PSA is undetectable, I'd really love that feeling for once. What happens if the Zytiga didn't work? Or, should I do chemo again, it did work?

The way I look at this.... A year ago, I could barely walk because of the back pain I was in. I was covered up with cancer, no organs or lymph nodes, just bones. Chemo and HT did away with most of the cancer and all of the pain so I'm a lot better off than I was a year ago.

I don't know how I'm going to win, I only know I'm not going to lose.

[Hidden]

It's hard not be anxious about upcoming PSA tests with the possibility of treatments not working or having to change treatments. Most of us know what that's like.

If you are really struggling to wait for an answer, you could just have your PSA tested now. If you've been on Zytiga for almost 2 months, I would think there should be some improvement in your PSA if it's working. If there is, you can just continue and put it out of your mind. If not, I would want to understand why and direct the treatment in that direction. You could have genetic testing to look for mutations and also check for neuroendocrine characteristics. That could possibly help you determine whether chemotherapy is the best option or there may be targeted treatments available for certain mutations. My doctor told me if I had a short repsonse to ADT, she would probably suggest going back to chemotherapy. You can discuss all of this with your doctor.

[TenscTexan in reply to Hidden]

I think I may have run off a bit too much. Although not bad, I'm having some re-occurring pain in my middle back which is concerning me the Zytiga may not be working. And, I might have helped my self to an extra pain pill because I couldn't sleep. Then the realization it had been a year since it all started, I was venting, thanks for listening.

[Hidden in reply to TenscTexan]

I'm in a similar situation as you. A year out from the start of treatment, wondering if what I'm doing is working. I also have some misc. backs pains that come and go. I just had a DEXA scan today for bone density. Thanks for sharing your concerns, I can definitely relate.

[Hidden in reply to TenscTexan]

Vent on! Friend.. I used to fear my pains were mets.. but it can just be muscle or joint pain ..let’s not predict that without proof . 3yrs for me. We are on a saga ...

[Tall_Allen]

I'd be concerned with the risk of spinal compression from those mets on your spine. They can zap them with one or two doses of SBRT to prevent that. I assume you are also taking Zometa or Xgeva to prevent bone loss from the ADT. And Celebrex taken with them has been shown to improve survival.

There is now a Medicare-approved blood test for something called the "AR-V7 splice variant" that dictates how long Zytiga or Xtandi will keep working:

oncotypeiq.com/en-US/prosta...

Alternatively, you can just take it and see. Because docetaxel was so successful for you, you can continue to have additional cycles after Zytiga fails. Sometimes it has even restored sensitivity to Zytiga/Xtandi.

[TenscTexan in reply to Tall_Allen]

I start Xgeva at my next appointment with my MO, a delay because of some dental work, and I recall Celebrex being mentioned at the time. I am anxious and hoping the Zytiga is working because there are little to no side effects for me. I would have to know that I would one day feel as well as I do today.... again after the second docetaxel, before I would throw those months away again.

[Tjc1]

Hi, i am taking Xtandi and in 60 days im at 0.4 from 9.8. So maybe zytiga or Xtandi can knock yours back for a long time. Hang in there!

Thomas

[TenscTexan in reply to Tjc1]

That is exactly what I'm looking for, I've never been below 0.5 and then it jumped right back up to 1.0 at the next chemo treatment just 3 weeks later.

[Tall_Allen]

You can read about it at the link provided. What do you want to know about it?

[Tall_Allen]

i haven't heard about any commercially available tissue tests for it. But keep in mind that cancer evolves, and by the time you are ready to start with Zytiga or Xtandi (if those are still the drugs of choice then), your cancer will have different characteristics. It may be AR-V7 negative now, but AR-V7 positive later. You learn little by testing before it becomes an issue for you.

[j-o-h-n]

I just marvel at you guys.... all I know is humor...

Good Luck and Good Health.

j-o-h-n Wednesday 04/04/2018 6:58 PM EDT