Doc calls it "Remission"

Ok, so I see my oncologist this past Tuesday.  Tells me that my blood work and scans looks great.  Considers me in remission and the cancer is currently dormant.  I usually have a problem with these types of terms to describe my cancer because I know how things can change quickly...Been on this journey for 4 1/2 years....at this point in my journey -- I'm going use those terms....Not sure what tomorrow will bring, but for tonight - I will say it is dormant and I am in remission....(glad this is a support group or I'd be paying a $15 copay....Hi I'm Jerry, It's been 19 months since my last Lupron....Hello Jerry).

 

Thanks,

Jerry

Remission means no evidence of disease, as in undetectable PSA. It seems ok to embrace that term when it applies. Remission is not the same as cure, which seems to create the hesitancy to use the term.

Controlled means still under treatment. Right now, I consider mine as "controlled remission. "Cure" is not a word very often associated with G9 diagnoses anyway.

I'm not sure when it becomes considered a durable remission, but I think that's after 5 years of no evidence of disease.

It seems though cancers can wake up after being dormant a long time.

I am also in remission. Sometimes people are in remission for 15 years and then it shows up. Hard to ever use the word cure with this stuff. But as Jerry said "controlled remission" is an appropriate description.

Those words have a ring to them.....run with it....have a glass or three of wine.

Jerry,
I would like to 2nd what Ed said, "it couldn't happen to a nicer guy". With all that you have gone through, thanks for "advocating" for all men! Way above and beyond. Now go celebrate.
Bill

Thanks Bill...

See you on the email...and on Dr. Drew...

This patient advocate says remissions are great.

This is great news for me tonight from a great friend and colleague advocate.

It comes on a night that I have very much concern for another friend, a 42yo at dx G9 metastatic drummer for a big production out here in Vegas. Just under three years into that journey he starts chemo in a couple weeks. So far I've clued him to Vogelzang, Scholz, Lebowitz. Vogelzang is sending him to Ryan at UCSF. He knows about Myers and Strum. He's just 44 freaking years old still.

Sigh!

Love ya very much Jerry! I needed to hear this. God bless you my friend! STAY HERE!

Jerry, very happy to hear that your still ringing up that zeros after 19 months of no treatment. I'd go with calling that remission.

Jerry L. -

From Free Online Dictionary:

Remission (n.): A temporary or permanent decrease or subsidence of manifestations of a disease, or a period during which such a disease or subsidence occurs.

Or, in simpler terms, "that beast is goin' down!"

Hopefully for a loooong time!

Good for you!

Jerry,
Congratulations. You are a class act and very valuable to this site.
I think the reason you are doing so well is that you have remained informed about your disease and have made great decisions.

Paul

Gunner - Time does fly by fast, that is so true...I try to put things in perspective and enjoy the day...thanks

Tony C. - Thanks Tony...  "freaking 44 years old..."...Wow, I've said those exact words before and I'm sure you have as well about yourself...but, I'm upset as well about your friend.  way too young for this crap...but my hope is that he can turn this ship around...has he tried the new line of HT, xofigo?  Does he want to join us here at HW?  We're here to help...

Oncas - thanks for clearing up any issue with the definition...I think that is a literal translation and is known internationally... Thanks for always being there when I need you...and I'm sure I'll be frantically texting you in the future.  Even though I've never met you...your friendship means more than you will ever know. 

BB_Fan - thanks...I like your definition as well...not as colorful as Oncas' party your ass off...but still like it...

Littlenm (aka Nancy) - thanks...I will...nobody really wants to be here, but I'm glad you joined us here...we G9s (or whatever G) need to stick together...that's for sure...

81Gyguy- Another fine definition...thanks so much...

LupronJim- Mazdaguy---that's funny...yes, I saw Myers on Tuesday....didn't prompt him for any description of my condition..said pretty much what we all say for a case like mine --- not cured, you'd have die of something else to be cured.  However, he did say that it appears to be in remission and dormant.  I didn't hear much after he said that...and in my mind I was already half way home...

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Again...thank you all...I'm nothing special...just like all you others battling away...just wanted to spread a little joy because I know that there are times I am just the opposite...fearful and worried...filled with all the emotions of a guy battling cancer...

Jerry, my friend showed up at my UsTOO chapter and when I looked at him I had hoped he was there for his father. But his PSA was 63, Gleason 9, mets in his bones. He was diagnosed a month earlier. He went on LHRH, and bicalutimide. PSA dropped to under 2. The next month it was already resistant and PSA was climbing. One month of effect. He then had Provenge and switched to Xtandi. It work for quite a bit longer. about a year. Then it failed and he started Zytiga WITH Xtandi. No effect. He is heading to UCSF and then will likely start docetaxel. I clued him to Lebowitz who does the opposite of what people would ever think here. He uses high dose testosterone to fight advanced disease. Lebowitz is very well known for creating ADT3 with a 5ARI. He meets with him on Monday. Wednesday to UCSF.

HW has been here before. I always tell men about HW. Everyman I meet I mention the importance of peer support and that this is the very best site for that. My site is not a competition for this site but rather a supplement to it. I still tell all men in my groups to start right here and Jason did. He skims. He also knows I will do anything I can for him.

Post Edited (Tony Crispino) : 4/25/2014 10:57:39 PM (GMT-6)

Bob Lebowitz has a series of videos out on the use of testosterone to fight prostate cancer. I just presented version 11 DVD in front of my group and it really raised eyebrows. But not in a negative way. Increasing T levels to 2500 sounds crazy, but his patients responded well. He said that as we age our "T" levels drop. And as we age our risk of PCa rises. He said what surprised him is how little research looked into the correlation.

I do not promote him, and I do not condemn him. It is very interesting to say the least. I remain highly skeptical.

Post Edited (Tony Crispino) : 4/25/2014 11:12:19 PM (GMT-6)