Darrell. Retired

[Ca-Darrell123]

I have been going to City of Hope hospital for the past three years. It is a great hospital with a wonderful staff and doctors. they have been treating me for advance mastic prostate cancer with  hormone therapy, I take Zytiga  along with a lupron shot every three months  and a clinical trial drug that only has a number so far so good we have been able to hold the cancer at bay.

[middlejoel]

Darrell, can you give us a little bit of your history, ie. how long diagnosed etc. I live 15 minutes from the City of Hope and often consider switching although I am very happy with my current docs at Prostate Cancer Oncology-- Dr. Scholz and crew. 

[Ca-Darrell123 in reply to middlejoel]

I have been going to City of hope for the past three years and they have been extremely good to me. I was diagnosed four years ago by a local urologist my Gleason score was a 10 (5-5) which indicated a very aggressive cancer his solution was he just wanted to cut the prostate gland out without doing any other testing but I opted to get a second opinion which seemed to irritate the urologist so we had a parting of the ways. I went and got a bone scan on my own and made an appointment with a radiation oncologist and he seemed to be a good doctor, He started me on lupron injections right away and referred me to a urologist in Redlands. he gave me an outline of how the treatment was going to proceed. the lupron was supposed to shrink the tumor,which was very large and on both sides of my prostate. I did the lupron for six months and then had an MRI done at Redlands hospital. I continued seeing the urologist and finally asked what the plan was because I had not herd anything and we were seven months into the lupron treatments he said to me Dr. Masic has not contacted you yet? I said no, later on that week Dr Masic contacted me and said we needed to talk so I went ti see him the next day. he told me the cancer had spread to my lymph system and was now stage 4 there was no need for me to see him any further as he could not help me and said I maybe had about  eighteen months to two years. Well that was a shock to my system and I went back to the urologist to see what my options were ( By the way he was also an oncologist) he said to just stay on the luopron. Well I thought to myself that was not a good enough answer; So I did a lot of research and fond that City of Hope Hospital was one of the top prostate cancer hospitals in the united states. I called them and they got me in right away. They did a lot of blood work along with a CT scan and a bone scan, then about an hour latter they introduce me to my cancer team, Dr. Tradowski, my nurse practitioner Pam, my planer and records keeper Monisha and a few technicians. (They are all terrific). I was amazed that the results from the blood work and the to scans were already in the doctors computer. Dr T was so great so kind and caring. he said lets get you started on Zytiga and into a clinical trial along with the lupron injection every 3 months. I asked him how log did I have, he smiled and said who knows, when this stops working I will find something new. That was 3 years ago. I am so happy that I went to City of Hope. The cancer is hardly growing at all and my PSA is now 0.19. Hope this has helped you. By the way City of Hope is also a natl. research center for cancer. 

[Wings-of-Eagles in reply to Ca-Darrell123]

Darrel. I live in the 92544 area of Hemet, looks like we are real close by. (And close in Dx, mine was PSA at 71, Stage 4 Gl 4+3 and 3+3, with four bone mets..I also considered going to The City of Hope initially, but now go to Cancer Treatment Center of America, near Phoenix. I am also on Zytiga for the past 25 months, 23 months undetectable.

[e-mail]

[Ca-Darrell123 in reply to Wings-of-Eagles]

I am so happy to hear that things are going so well for you. With this type of cancer There are many challenges and side effects from the medications but the most important thing is to keep a positive attitude and having faith in the medical team who are taking care of you. Keep the faith.

[Wings-of-Eagles in reply to Ca-Darrell123]

Yes, you said it..spot on, positive attitude and a great team of Doctors. Do you know me? I sign off almost all my posts on the Healing Well.com site with Keep the Faith!!.I am definitely looking forward to maybe meeting you someday soon. Dan in Hemet!

Keeping the Faith

[Ca-Darrell123 in reply to Wings-of-Eagles]

Hi dkasper333. My last cat scant in Otc. Indicated that the cancer may have moved into my liver so did a biopsy and it was cancer. My doctor took mo off the zytiga and the clinical trial of the adt but left me on the lupron. I took my first chemo treatment today will keep you posted. PSA still 0.1

[Hidden in reply to Ca-Darrell123]

You probably had to be taken off the clinical trial because of "progression". I think your doctor had nothing to say about it, had no choice.

As far as the zytiga, why did he take you off that?? Or was the trial "lupron plus zytiga"? In which case, he could have dropped you from the trial, but kept you on both drugs. Just curious as to what the thinking was.

I am confused by the expression "the clinical trial of the adt".

[Wings-of-Eagles in reply to Ca-Darrell123]

Darrell,

I wondering if you live in Hemet or San Jacinto, anyway could you call me at 951-925-4463 ??. I have an important question about Zytiga refills, I am frustrated to have to wait for new prescription refill approval, thru myt new Insurance Aetna, delays delays delays. My old Insurance,Cigna approved the drug initially within one hour!!

[Hidden]

Darrell, I am also on a trial drug. 7 yrs. in non-mes, but may be mes now. I may have to go off the trial. It seems my oncologist and the study folks are NOT on the same page. I have been on Aragon-509 study for almost a year now. It's specifically for non-met PC.

I've had imaging done every 16 weeks by the study doctors, so its seems like I was getting good analysis of what is going on down there. 

Recently, my oncologist looked at the pics and found met in my spine. He ordered a fluoride bone scan. This verified the movement into my spine. I have yet to hear from study "doctors" as to what I am supposed to do here. So, i'll find out on the 6th.

They also have a study going on for met PC. At least they did when I applied.

I believe I will be withdrawing from the study. I will do what my oncologist wants. 

All the best for you.

[JoelT in reply to Hidden]

Joe,

Thanks for participating in the clinical trials.  The heroes of our disease are those of us who are at the cutting edge, the men who participate in the trials.

Joel

[Ca-Darrell123 in reply to Hidden]

I hope all works out well for you. Best of luck to you.

[Prellch]

What clinical trial drug are you taking.  I know it only has a number.

Thanks for the information.

Chuck

[Hidden in reply to Prellch]

I'm on ARN-509. If you google it, you'll find more than I can tell you about it. This drug is for non-met, but they also have a study drug for met disease. I came across this study through Joels old site.

Joe

[Ca-Darrell123 in reply to Prellch]

I am not really sure what the name of the clinical name is . I do know that it is sponsored by five hospitals and it has to do with boosting up Zytiga.  I believe what they are trying to do is to get the cancer to where it is a treatable disease that they control like diabetes. They take all of your genetic information and samples of you genes and send them all around the world. In my case it seems to be working fairly good. I will be going to the hospital next Monday and I will find the actual name of he study.