Angry and ready to fight

I went and had my six month bone scan Thursday, the first since doing Provenge. The follow-up is this Tuesday but the doctor called me Friday. Not a good sign. What he said was the mets in my back, pelvis, and ribs have "enlarged" and I have new ones. If he told me how many, I didn't remember. I was a bit upset. He mentioned adding DES to the mix of monthly lupron shots and xgeva. I said we'd talk about it further Tuesday.
I also had my monthly PSA Thursday so I will find out the results of it on Tuesday also. It will not surprise me if it has not changed much. I have thought for awhile that my cancer does not have to have a high PSA to grow. So I do not know how effective doing DES will be.
My thoughts are I need to get aggressive with this cancer. I feel my doctor has a set protocol of this drug then that. He's not thinking out of the box and he needs to with me. He mentioned Xtandi and that felt that was more in line with my thinking but maybe that is not enough. I have decided to seek other doctors opinions. I live in Florida so if you know a great doctor in my state, let me know. If I need to go out of state, I will, but my finances are not that good. I am open to all suggestions.

Wow I am so sorry you got sucky news about the new mets. Definitely look in to all the treatments available and if necessary switch docs. I used to arm myself with printouts of research studies that supported my own desire for trying a different medication, treatment regimen, dosage etc. when it came to my autoimmune stuff.

I plan to do the same with Paul's care too. Those ****ers need to explain why their way is better than what is proven and if they can't back that stuff up with proven research then there will be some problems!!

Sometimes you need to educate your medical team as they may not always be current on the latest research, and sometimes they are too arrogant or narrow to even try.

Those that go strictly by the book without any other consideration are not going to be on Paul's care team if I can help it at all... There is too much that is non-standard with this PC stuff as I can see already.... Sometimes its a lets try this and see kind of thing and a doctor that won't listen or consider the research should go into a different line of medicine that doesn't hold someone's life in the balance and depend on them being well versed in every little aspect there is to know....

I do hope Tuesday goes okay, and please let me know if you need help getting article copies or looking stuff up. I might have some time to help you.

Sorry for the bad news JC. You sure have had your ups and downs.
I am another Florida brother but luckily I haven't had a need for additional treatment.

I see you are from Orlando. Both myself and my wife had surgeries at a Florida Hospital and have been VERY pleased with the help we received there by everyone we had contact with. Maybe they have someone on board that can help you.

Good luck

Bill from Florida

D.e.s.????? I tried it instead of Lupron when Lupron failed. I wasn't impressed. It worked for 5 months at best and I had to get my chest radiated because I was growing breasts. Sorry..... Not a fan. Provenge takes up to 6 months to really kick into gear. Zytiga works great. Xtandi works well also. I hope you get the results you seek. Good luck. Todd