My Journey

[kjscobel]

My name is Ken, I am currently 70 years old. I was diagnosed back in 2012 with Stage IV PCa. It was found completely by accident. I had a MRI investigating a spinal stenosis issue, and my spine doc noticed some issues with my groin area. She sent me to a urologist. Subsequently, a blood test showed my PSA was 23. A biopsie showed Gleason 9 in a number of samples. A bone scan also showed positive for cancer cells.

I was started on casodex and lupron. However it was found the casodex raised my liver readings to 5 times normal! Therefore I was taken off casodex, it took 6 months for my liver readings to return to normal. In the meantime the Lupron was doing its job and my PSA dropped to a low of .08 back in July 2014. Since then it has slowley begun to rise.

Currently my PSA has doubled since March and stands at 3.148. My oncologist will be adding a new med to my treatment soon. The good part is my CT scans are clean, and my bone scan only shows a few small cells in my pelvis. At last check, my testosterone was at 13.

In summary, I have been a Stage IV survivor for 5 years. I continue to enjoy life and do the things I like to do.

[Dr_WHO]

Sorry about the original diagnoses but glad that you are hanging in there. I do not have any treatment suggestions but you do have my support and prayers.

It is hard when you find out out of the blue that you have Stage 4. That is kinda how they found my Stage 4 D1 when I was 58. When I was 57 both the digital and PSA said I was fine. Not so when I turned 58. Even then, my PSA was only 4.7.

I am glad that you are enjoying life. Since my diagnoses that is what I have been trying to do. I am about 18 months past surgery (had to argue to have is as the cancer had spread to my lymph nodes), followed by 38 rounds of radiation. Currently I am on both Lupron and Zytiga.

Do you know what the new treatment plan will be? If you post it perhaps the smart ones in the group here could offer you advice. In any case, I am hoping for the best with the new treatment plan.

[Hidden in reply to Dr_WHO]

You know what really pisses me of Dr? I wasn't even given a choice, I was told I had Lymph node involvement, and an RP was out of the question. Well, seems like that Lymph node involvement was questionable. So questionable, that it was highlighted on my Biopsy Report with a question mark. So, why am I having such a hard time finding a lawyer who will talk to me? Oh, hindsight.

Joe

[Dr_WHO in reply to Hidden]

My neighbor had similar issue with his surgeon. They just opened him up, found that it spread to a lymph nodes and closed him up. He said that waking up after "surgery" and finding out that they did not finish theoperation was devastating. He did not even know that they would stop the operation if there was migration.

When I met with the surgeon I had to go in with a series of articles showing improved long term survival with surgery even if it had spread to the pelvic area. Even then it was a struggle. He said he agreed just to shut me up.

Just this last month more studies have shown benifits for taking out the prostate when had metastasis to lymph nodes has occurred. That said, I expect that most surgeons still will not remove the prostate if the cancer has spread.

[Hidden in reply to Dr_WHO]

I agree, but in my case protocols weren't followed.

[Dr_WHO in reply to Hidden]

You may have a case. So sorry.

[Hidden in reply to Dr_WHO]

I have to tell you about how naive I was. I was having horrible pain in my lower abdomen, which I told my Uro about, he did nothing, I chalked it up to the PCa. But something was missing, like checking my bladder.That was in my records dating back to Feb, 2013. It wound up being a blocked bladder, and wasn't treated until July 2016. I thought the cancer was making me so ill, but it wasn't, it was this blockage. So, I think I have two cases.

Joe

But, not holding my breathe.

[Dr_WHO in reply to Hidden]

So sorry. It is true, you have to bone up and be willing to challenge the doctors at every turn. You have to also be able to run your own literature searches. That was one of the things I had to do when I was working. I hope that you have a better cancer team now.

[Hidden in reply to Dr_WHO]

I wonder if HIFU would be an option in this situation. The prostate remains but the tumors within are zapped. Of course, Medicare and consequently all insurance companies, are dragging their feet on coding up HIFU.

[kjscobel in reply to Dr_WHO]

Dr Who, I have been on my latest treatment, Zytiga with Prednisone for a month now. I had a blood draw earlier this week, and will be seeing my urologist next Monday for the results. My last PSA reading was 5.55 back in December. It will be interesting to see how effective the Zytiga is.

[Dr_WHO in reply to kjscobel]

Hope you get get great results! Please keep an eye out for your liver and other bloodwork.

[kjscobel in reply to Dr_WHO]

I am concerned about my liver. I was put on Casodex when I was first diagnosed and it caused my liver readings to elevate 5 times normal. It took 6 months to return to normal after stopping casodex.

[Dan59 in reply to kjscobel]

I had liver abnormalities with casodex 11 years ago, since then I have been on nilandron high dose ketoconazole, zytiga, xtandi, and docetaxol and never had liver problems with any of them. Keep your eye on your labs.

Dan

[kjscobel in reply to Dan59]

I will be getting my latest bone and CT scans next week, and additional lab work fom my IU Cancer Center Oncologist. I will know more then.

[Dr_WHO in reply to kjscobel]

That just means that you have had your fare share of bad side effects. Hopefully the tests will come out fine.

Praying for it!

[MelaniePaul]

Thank you for sharing.

It sounds like you are doing pretty well. I hope it will continue for a long time.

Mel and Paul.

[Sisira]

Thank you for joining us to share your story. Anyway, sorry to learn that you were stage iv at diagnosis. As you are doing well, hope you will continue to do so with the treatment options available that you should use intelligently.

Best wishes

Sisira

[kjscobel]

My Oncologist is talking about adding either Xtandi, or Zytiga to my meds. Anyone had experience with either of these?

[ctarleton in reply to kjscobel]

Hi Ken,

You have had a good long run on Lupron.

If you use the Search Box at the upper right of the page you will get "hits" for over 100 Posts each for search terms "starting Xtandi" or "starting Zytiga". You might find all kinds of information in them that will help answer many of the common initial questions, and also generate some specific questions you might still have.

Overall, the effectiveness of one vs. the other are in similar ballparks. Both are expensive and require close Insurance Formulary/Preapproval coordination.

After doing that quick review, you will likely get more responses if you start another Post with a new subject line pertaining to your specific concerns or questions.

Charles

[kjscobel in reply to kjscobel]

Hi gang, getting apprehensive, my next cancer scans are in less than 2 weeks. My oncologist suggested physical castration as part of my treatment. Has anyone had this performed? They don't work anyway, and they have shrunk, it's no big loss, right? What are the benefits other than less testosterone production. This would be in addition to either Xtandi, or Zytiga meds.