Today's oncology visit with oncologist

Sorry to hear that, wish you well...Jim

Thanks guys. This is a very aggressive form and was hoping that the Lupron/casodex regiman would have slowed it down, but it doesn't look good.

Not what you wanted to hear. Tough to take in I am sure.

hang in there,
Andrew

Sorry to hear about the increase in psa. Still, there are still a tremendous number of tools in the arsenal. As a fellow g-9er my thoughts and prayers are with you.

Aloha
Simon

Never a good thing to have a doubling psa read. Hope you get those scans soon and the news is better. The silver lining is all the options that are still available for tx. Gary is having his third round of chemo and seems to be responding after a failed clinical trial and with psa 900. Hang in there bro and keep us posted.
Beth for Gary

I had to move on from Casodex and Eligard after my PSA jumped to 40 something. After one month on Zytiga it came down to .1 and just had a shot of Lupron so hoping this will last for awhile. Hang in there.
Michael

I can imagine that you feel worried and discouraged - but other guys have had pretty big increases and still got things back under long term control. What upset me more than the psa increase was that you are giving up on the chance of a cure. I think all of us high risk guys need to hang on to the hope for a cure no matter what is happening. So try to get some sleep and re-connect to your belief that you can beat this beast. I believe you can. Don't let anyone or anything sway you from that belief. Sorry if this sounds like a lecture.

Aloha
Simon

Yesterday I had my bone scan and then later in the afternoon met with my oncologist. She did not have the information regarding the bone scan but I was able to get a copy of the CD for my records. I asked the imaging company to expedite it but unfortunately it was not done. My CT scan was performed about a week ago. I did not get a copy of that scan but am in the process of asking for that information.

My oncologist informed me that there has been recent activity in my pelvic lymph node region but otherwise there has been no further uptake. My cursory review of the bone scan did not indicate any suspicious activity but I am no expert and will wait to see what the radiologist report reveals.

She (oncologist) provided some options including Enzalutamide or Abiraterone. The other alternative is Taxotere. Further she recommended that I stop casodex immediately as Pca becomes resistant to casodex. I would continue Lupron indefinitely. With regard to Taxotere, she discussed the side effects of Taxotere including Hair loss, fatigue, swelling of the ankles, bone pain, nasea, and neuropathy. I asked her how long I would be on this therapy and her reply was "until it stops working." She then went on to say that there are still plenty of treatment options available including intermittently stopping chemo and switching to advanced forms of Hormone blockade.

We also discussed that if I were to choose Taxotere, that it would be administered intraveniously and that the treatments would be spaced approximately three weeks apart. This is to provide maximum effect. She informed me that I could be dosed with lower amounts but that the frequency of treatments would inversely increase and have shown to be less effective.

Last we discussed that I would be receiving more needle injections than I already am and that the frequency of labs and imaging would increase. She informed me that I could have a Pic U (not sure if I spelled that right)or an IV port installed. I think if I go for the chemotherapy, I will choose an IV port. It seems like it will be easier to care for in the long run and I can save some of my veins from getting too scarred up.

Overall, I must say, I am handling this better than I thought I would but still have bouts of sadness and grief. Still can't believe this is now my life. At any rate, I just needed to unload. Thanks for listening.

I don't know you, but I liked your posts, if "like" is the right word for such a harrowing experience. I wish you the best, and hope you get some good news one of these days. And please keep posting, those of us about to go down this road can perhaps benefit from your experience.
Henry

Hawaii,
My urologist who performed my surgery recommended, no, insisted that I have radiation in that area. Approximately four months post surgery, I met with a radiation oncologist who essentially said that I did not need radiation because I had already received local therapy and that because my PSA was undetectable, that I had received all the therapy I need.

Because of bone pain, my urologist had me stop Lupron and stop casodex around June 2014. By September 2014, my PSA jumped to .2. In December it was 1.2. My urologist once again made a referral to radiation oncology and in January I once again met with the previous radiation oncologist. He once again denied treatment, this time claiming that it was always the belief that I was systemic and that I would receive no additional survival benefit from radiation. I insisted that I receive additional treatment and was referred to a medical oncologist and after my next PSA rise to 3.9 in March 2015, I was once again placed on Lupron and casodex. despite the hormone therapy, my PSA skyrocketed to 24. That was when the scans were ordered. So, to answer your question, I am not sure if radiation to the pelvic lymph nodes is on the table. It may just be too late for that.

Phenom,
Thanks so much for the reply. Being on this site is therapeutic. I get to say what's on my mind and no one gets to see what I mess I can become sometimes. I hope that by sharing, I can help others get a better picture of this disease and also the effects of the different therapies.

Beth,
you are such a champion for Gary, and yet you find time to talk with us guys out here. I appreciate your feedback on Taxotere. The side effects are a big concern for me but as we all know, this stuff works differently on everyone. Because the PSA is spiking so rapidly, I think that chemo is my only choice. So off we go.

I think I will shave my head real close before chemo starts. That way, when it starts to fall out, it wont be that noticeable.

Aloha:

When I was first diagnosed (Stage iv), my urologist told me that the only thing I was eligible for was HT and that I would stay on that until it failed. I asked to see an oncologist and he told me the same thing. I asked him if that was the "gold standard" for people in my situation and he said "absolutely". I asked to see a radiation oncologist and he told me the same thing. I actually said to him that I would like to get some radiation to the prostate and prostate bed and he said he wouldn't agree to do it. He said I have so many billions of cancer cells in my body that RT would just be a waste of time. No room for hope there. Sound familiar?

Fast forward a few months to MD Anderson in Houston to which I self referred. The panel that reviewed my case (and upgraded by GL to 9) advised me to have a da vinci RP. Since one of the pathology findings was a small area of "suspicious cells" outside the margin, I was advised that RT to the prostate bed was an option and I went for it. My RT started 12 weeks after my RP. I was finally taken off HT after 18 months in May of 2014 and, thanks be to God, I am still undetectable. From the moment I stepped into the MDA system, I felt my hope return. Maybe this multi-modal therapy wouldn't work but I felt it was giving it my best shot.

Of course no 2 cases are the same and perhaps your docs are absolutely right. On the other hand, perhaps you need a new set of eyes on your case. Just a thought.

Sorry to hear of the PSA rise but glad that you are reviewing options.
My situation was similar to Simon's. After chemo, I was debulked with RP, including multiple lymph nodes, even though cancer was outside the prostate and I already exhibited mets in several areas of my bones. Followed that up with 36 radiation treatments 5 months after surgery, even though my PSA was undetectable. These procedures were all done with the intention of reducing the amount of cancer, not necessarily to cure. Results have been great so far other than the side effects.
I hope you can get your docs to consider a more aggressive approach. I believe the goal should be to get ahead of your cancer instead of reacting after you show progression. We don't need to treat cancer like we did decades or even just years ago. I think there is a different mindset now with many progressive treatment plans. Guys like us are living longer now and by switching from treatment to treatment we can manage our cancer instead of it managing us.
Good luck,