Vacation is over

[Todd1963]

Well all good things must come to an end. My PSA had risen to 3.0 up from .06 4 months ago. Testosterone made a huge jump into normal range for my age. It was at 245 up from less than whatever the lowest detectable level is. I will miss it. I had 11 blissful passionate months. It could have been better however. If I ever get to take another treatment holiday I will continue with the Prednisone. My entire treatment holiday I was suffering from adrenal insufficiency. That will ruin your day. Anyway that is it for my update. I received a Lupron shot 2 weeks ago and restarted Zytiga. I wonder if it is even necessary to restart the Zytiga if my Adrenal system never restarted. Hmmmm???

[Tall_Allen]

Zytiga also blocks intra-tumoral synthesis of androgens. Did you see the new data that for third line therapy, Jevtana is preferred to whichever 2nd line therapy one didn't try:

medpagetoday.com/meetingcov...

[Todd1963 in reply to Tall_Allen]

Thanks Allen. That was a good read. I was on Zytiga 67 months before my break. Pretty amazing I think. It’s good to know what my next step might be if eventually Zytiga fails. I am counting on that being a good long time from now so undoubtedly protocol will change again. ✌️

[Gearhead in reply to Todd1963]

67 month. That's about $800,000 worth of Zytiga. Did Janssen send you a thank you?

[Hidden in reply to Todd1963]

This post gives me such hope! My husband just started with all this. Can you tell me did you do radiation? We have to go see a radiation oncologist. They said he will keep is prostate as it is in his bones. Thanks.

[Todd1963 in reply to Hidden]

I did not do Radiation. The cancer was too far widespread. At DX it was in my bones, lungs, lymph system, and brain. You should have hope!! Life is

Going to change but there is definitely hope for a future

[Hidden in reply to Todd1963]

Thanks so much!!

[tom67inMA]

Saw a similar update on your blog, but for some reason couldn't comment there. If I recall correctly, you still have a prostate, no? If so, how did you / your MO determine that the PSA rise was due to cancer activity and not just your prostate responding to T?

Very sorry to hear that your vacation is over, but very happy that your still around to give us updates and live life in general. I'm only a year into my journey and hope I get 11 months off a decade from now

[Todd1963 in reply to tom67inMA]

Hi Tom... that is a very good question. The truth is, we had a predetermined threshold for restarting treatment. I do have a

Prostate. The concern was not so much the level but the velocity of the rise in PSA. If you do the math, you see it was doubling every 4 weeks. I also thought I was mildly symptomatic but in hindsight we now realize I was suffering adrenal insufficiency. Now that we understand the reason behind my symptoms, if I get another treatment holiday, restarting treatment will be based upon imaging as well as PSA

[tom67inMA in reply to Todd1963]

Ah, got it. Those steroids really do help. When I was in chemo, I'd take dexamethasone leading up to the infusion, and then they'd give me more during the pretreatment. I had no symptoms or side effects for the next three days on that stuff.

BTW, I was very happy you mentioned losing weight on Zytiga in your blog. I instantly dropped 5 lbs when I started it, so you're not the only oddball who does the exact opposite of the published side effects. Hoping it works as well for me as it has for you.

[mcp1941 in reply to tom67inMA]

What dose was the dex? Besides PCa I am also being treated for Multiple Myeloma and getting a 20mg dose every monday with infusion. Dex is giving me some bad side effects like hand tremors and inability to sleep more than 3 hours for 3 days after infusion then I crash on Thursday. What chemo were you on?

Mike P

[tom67inMA in reply to mcp1941]

I had 3x 4mg pills in the 12 hours before infusion, then whatever they gave me in the drip so probably about the same as your dose. Chemo was docetaxel.

[monte1111 in reply to mcp1941]

Took dex pills day before and day of chemo. 3 days insomnia. Worse than the chemo.

[mcp1941 in reply to monte1111]

I agree 100%. Chemo for Multiple Myeloma was as easy as drinking a cup of coffee. I guess I can consider myself lucky that oncologist was giving my half the normal dose of dex.

[Schwah in reply to Todd1963]

I am on a vacation too from Lupron Zytega and still Have a Prostate. I’ve discussed with a couple of Prostate oncologists and the consensus is to use imaging to determine if any future psa rise is related solely to my Prostate. Probably a psma test.

Schwah

[JamesAtlanta]

Sorry the vacation is over, but congratulations on a wonderful 11 months! I’m hoping for a vacation soon...🤞🙏

Best wishes on the next phase of your journey! Thanks for sharing your story.

James

[Gearhead]

Todd1963: Thanks for the post. Valuable experience information re "vacations". I and maybe others would be alert for more details, especially libido.

[Todd1963 in reply to Gearhead]

During my vacation my Libido rebounded somewhat. Who knows, maybe it rebounded 100% Seeing as how I was diagnosed in my early 40’s so I have no idea what is normal for a 55 year old. All I know is that I pretty much felt like I was going through puberty again. Morning glory, spontaneous erections, and dang she look good.

[j-o-h-n in reply to Todd1963]

Spontaneous erections? Is that the same as off hand?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/06/2019 11:25 PM DST

[M1Mike]

I too had 11 months of vacation after 13 months of zytiga, lupron and prednisone. It was great. This time around I an trying Casodex with Avodart. My psa was at 14.8 end of august, I go tuesday to see how I am responding. Was able to actually have sex after about 9 months or so on vacation, with viagra, that's still working so far. Turning 63 next week! Still physically good shape. Love riding my Harley! We need to start a mpc harley riders group!

[TEBozo]

Will be on Zytiga/prednisolone and Firmagon for 11 more months, 7 months in my rear view mirror. I pray that my T will return and that my adrenals will start up again.

[Hirsch in reply to TEBozo]

enjoyed our conversation..will be in touch

[Todd1963 in reply to Hirsch]

Uhhm. Not sure! Sorry

[davenj]

Was the 245 your total T or free T?

[Todd1963 in reply to davenj]

Idk what the 245 number was actually.

[Frigataflyer]

Could you please post a link to your blog?

[Tommyj2]

What IS the my cancer roadmap??..... If I reach the point of needing Zytiga I don't stand a chance in hell of being able to afford it....will doubtless have to go to india for my meds unless Company helps out.

did you get assistance??

[Todd1963]

Toddseals63.blogspot.com

[Todd1963]

Not sure how to make the link clickable

[Greatfaith]

Thank you for sharing, I too am looking forward to a "vacation" from Lurpon. Doc says after one year if my PSA continues to be undetectable. I wish you all the best!!