Taking it one day at a time! - Advanced Prostate...

Advanced Prostate Cancer

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Taking it one day at a time!



I'm 54yo, and was diagnosed with stage 3/Gleason 9/Psa 36, prostate cancer in 2013. I ended up having a prostatectomy that same year. After surgery my Psa went down to 0.164 and slowly made a climb back up to 3.2 by the end of 2014. After doing some extensive reading, in 2015 I became experimental and tried an array of supplements recommended to me through a local LaC. Unfortunately, my cancer was aggressive enough that they weren't strong enough to hold back it's growth. By the end of that year I had developed a bone met on my T1 vertebrae and also on my right hip bone. Through my oncologist at UCSF I started Lupron injections in January 2016 and it eventually knocked my psa way back down. It stayed there for over a year and then I started to become resistant to the drug this year. My oncologist has recently started me on Lupron with Casodex (temporary) as we're awaiting the arrival of my Xtandi drug. During this time period my mets became active again and the met in my spine has now aggravated a nerve that travels to my inner groin making walking any distance a challenge. I'm scheduled with a radiologist next week to radiate both mets in hopes that will help. My fingers are crossed as I love to hike and stay active.

Thanks fo reading!

11 Replies

Hi kepster

Thanks for your story. Hope they are aggressive as having psa post-op of .164 was a red flag. On the other hand, doubling in 4 years is not so bad. Who knows?

All the best

Since you started Lupron about a year ago or less you may want to discuss with your medical oncologist the results from the Stampede trial that was published this June. They found good results using a mixture of Lupron with Zytiga.

kepster in reply to Dr_WHO

Hey, thanks for your reply! He did give me the option of either Xtandi or Zytiga. He said with Zytiga I would need to also take prednisone to replace my Cortisol. With the Xtandi I do not. Layering more drugs didn't excite me so we decided to see how I did with Xtandi first. I've read some positive things so am hopeful.

Dear friend, I would recommend at this stage, you should try early chemo combined with Zytiga. Why? It is a regrettable fact that most of us tend to forget the true nature of PCa and focus more on results such as undetectable PSA, no bone pains, quality of life factors etc. and try to buy time with palliative treatments depending too much on hormone therapies. Unfortunately doctors too are silent on this. The stark truth is PCa is heterogeneous meaning some cancer cells are hormone sensitive and some ( may be smaller in population ) hormone refractory ( insensitive ) and the most lethal. They can be PSA negative too. Higher the Gleason Score higher the potential risk of this hormone refractive cancer cells taking the upper hand.Hormone treatments are simply irrelevant to this latter type and overall not considered as a curative treatment. These facts are more important for your case because you have been diagnosed at a relatively young age of 54 with a high risk pathology but you are looking forward to a much longer battle hoping to triumph unlike me who was diagnosed at 68 in 2015. Fortunately you have debulked a great deal of your PCa with the prostatectomy which is a gold standard curative treatment. It is more advisable now to catch both types of cancer cells in your high risk aggressive metastatic PCa before they become mCRPC and KILL them as early as possible with the aforesaid combination of Chemo and Zytiga. The other killers are Ketoconozole, radio active isotopes and some nuclear medicine. Hormonal drugs such as Lupron, Zytiga, Extandi ( strong AR blocker - anti androgen ) cannot do this job.

I wish you all the best in your forward march.

We are always with you and thanks for joining us.


kepster in reply to Sisira

Hi Sisira,

I joined this group for exactly that kind of feedback. It's tough to entirely rely upon my oncologist and I'm continuing to see that I need to remain informed by communicating with other's who have been there. I learned early on that being my own health advocate is best. I will take your advice with me to my next appointment with my oncologist. Thanks.



So sorry you are having this issue at such a young age ... I was diagnosed with stage 4 at age 54 ... just a little older than you. It's tough. But we persevere for our loved ones!

I agree with Sisira - chemo and Zytiga. The results of the Stampede study are clear and seem like the best option for you at this time, based upon all I have read. I'd also make sure they are aggressively treating you. Given your previous bone mets history, I would hope they quickly start your radiation treatment.

I've had 6 rounds of chemo and if your health is generally good, it's not too bad. Knocked my PSA down to undetectable. But to Sisira's point, it will go after the non-PSA producing cancer cells, too. Which is what we all ultimately need.

Best of luck to you. You have a lot of hikes left in you! We are all pulling for you! Hope this is a helpful reply.

kepster in reply to JamesAtlanta

Thanks for your feedback. I meet with my radiologist next week. I realize that it's likely more mets are present, but at least I can hit the ones that are currrently bothering me in hopes that the Lupron/Xtandi will put the small ones to sleep. It's a temporary plan for sure so chemo could be the way to go. It's a discussion for my next oncologist appointment.

Sounds like you are taking the right steps. I has 32 months of success with Xtandi, wich you the same or more. I finished radiation to my spine six weeks ago and my back is much better. Good Luck.

kepster in reply to bb66hotflash

Good for you, I'd take 32 months of success! :) Hey, how did you do overall with the radiation? When did the pain start to diminish? Any fatigue? This limping around business has been the toughest thing so far so I'm hopeful the radiation will rectify that.

bb66hotflash in reply to kepster

The radiology oncologist set up 20 cycles, M-F, 4 weeks. A lot of fatigue, nausea, finished on a Friday, Tuesday started Chemo. Had a lot of stomach upset, pain requiring opiates, and had esophagus pain for four weeks after radiation, this was all complicated by my liver metastases. I was having trouble walking due to sacral nerve pain, pain shooting down my legs. After radiation, leg pain was gone. My biggest mistake was getting chemo before recovering from radiation, but that story is too long for this message and I wouldn't change it anyway. The leg pain went away the last week.

Sorry to hear of your troubles with this disease, and at an early age at that. You've come to the right place anyway. Good luck with your treatments.

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