Lurking in the shadows

[WINGER19]

I was diagnosed in January, and immediately started looking for information. I have a Gleason score of 8,and 7 bone Mets mostly in the spine, rib and pelvis. No other glad involvement yet. Mt Psa was 11.9, my urologist started me on firmagon and was telling me to consider zytaga, however my insurance would not cover it, doc said it might be a coding error. In any event got a 2nd opinion from U of M cancer center, which pretty much was yep your stage 4 w/Mets standard course until you become castrate resistant. I then got a 3rd opinion from Karmonis cancer center, Dr. Heath, stated a person in my position should start chemo right away, which rendered the zytaga issue moot. I was in the middle of dental care and doc wants me to complete the dental stuff first. Schedule for start off chemo the day after my 65th birthday. Docetaxel 6 courses every 3 weeks, she then said we still have a full quiver of arrows after that. She suggested I switch from firmagon to lopron as it cuts down on the need for a office visit every month. I understand that you guys are at different levels of involvement and I feel guilty stepping out of the shadows, but I'm just trying to make sure I am not missing something. I am in an Ironman clinical trail, but I think that's just for informational purposes. My doc did tell me that a clinical trial was coming soon that would do genetic testing as part of the trial. I'm also taking Metformin and Avodart from prior diabetes and Bph. Any suggestions. Thanks in advance.

[WINGER19]

Also Psa dropped to 4.7 as of last week

[BarronS]

Sounds like you are getting the best standard treatment based on recent studies.

The only other thing that you could consider and talk to your doc about is getting your bone mets zapped with radiation. There is only anecdotal and some very small studies indicating that this may delay progression of castrate resistance and lower PSA.

Did anyone mention having your prostate removed? One study has shown that there is no benefit to getting the prostate removed if you have higher volume disease but it does help reduce symptoms at the later stages.

Finally, I wouldn't worry about not getting zytiga in the first line as all of the studies I have seen indicated that there was no difference in progression or survival between people getting docetaxel or zytigia in their first line.

[WINGER19 in reply to BarronS]

Thank you for the quick response, I did mention getting radiation, I read about a Mayo clinic doctor (Wang) I believe but my doc said there were to many and it would destroy the bone marrow.

[tom67inMA in reply to WINGER19]

I had radiation to a met on my spine and wasn't that impressed. It may have cleared up the sciatica pain I had been having, but can't say for sure if it was the radiation or the hormone therapy that did that.

I've since had chemo and will be going onto Zytiga next. There is some debate about whether early Zytiga after early chemo provides a benefit or not, as it's a combination that hasn't been specifically studied (there's so many possible combinations!). Generally, studies have shown that more early treatment is better, with the specific exception of combing Zytiga and Xofigo.

Stay on the Metformin and Avodart, as both can help fight the cancer. If your cholesterol is high or even marginal, consider a statin as that can help too.

[Hidden]

By George I think you’ve got it . A great Dr with a great plan that has worked for many. Wonderful facade design in the pic ..from out of the shadows ... Welcome !😎

[WINGER19]

Thanks Lulu

[Break60]

How about starting xgeva for bones ?

[WINGER19 in reply to Break60]

I asked asked my urologist, he said the insurance companies like to see a rise in PSA, but I find myself thinking every doctor has a series of steps they take depending on their personal knowledge of the type and progression of this disease. You almost have to shop doctors to find the standard of care you feel you need. Plus I go from my private retirement insurance to Medicare with a bsbs medigap coverage in 3 weeks. Just hoping this doesn't turn into "man I wish I knew it then "

[Break60 in reply to WINGER19]

If you’ve got bone mets I see no reason to wait to start xgeva!

[WINGER19]

Thank you for your response, I will be sure to bring it up with my doc in 2 weeks. I get great comfort from this site. I went from thinking I'd be gone in a year to hoping to live through the advancements of medicine and enjoy many more years.

[Fitzbruce1]

It is so very tough hearing the news. I am 8 months into the struggle. Using Zytiga n Lupron from the beginning my PSA is 0.03. No side effects other than hot flashes which are fewer as time goes by. I take monthly Zometa infusions and lots of gym workouts for bone strength. I too have hope, primarily from the warriors on this site. Nobody can understand what you are going through better than guys on this site. Good luck to you!

[Schwah in reply to Fitzbruce1]

Add Celebrex to the zometa. Clinical studies showed the two together reduced deaths by over 20%. mdedge.com/oncologypractice...

Schwah

[j-o-h-n]

From out of the shadows eh? We saw you lurking there all the time and thought your were from the IRS since it's so close to uncle Sam's birthday. Thank goodness you're not or we all would be up shit's creek without a paddle. Now as far as "being gone in a year" stuff well we all thought we would be gone in a month. Good you got that silly idea out of your head and realized that you'll be around for a very long time. So long that you'll become a p.i.t.a. to you family and friends (and to us)👀. Greeting btw and sit tight cause you've come to the right place for info and camaraderie. Laugh a lot it helps.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/12/2019 7:19 PM DST

[WINGER19]

John your post actually made me smile. I seem to be on a bit of a roller coaster at times but your right gotta keep smiling.