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G 9 'ers treated with HT+IGRT/IMRT+Bachy

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Posted 7/17/2016 8:11 PM (GMT 0)
I'm just looking for guys that have high risk G9 PC that chose the same treatment plan as I have. I've just began this treatment with my Zolodex shot on 6/17/2016. I know by looking and searching that there are more guys out there with G9 . I'm looking for the guys who have traveled my path or are traveling the same path as I and would like to hear your results ,experiences, and advice. Not that I haven't already gotten a great deal of help from many so far. Would just like to hear from others that are going through the exact thing as I am. Thanks Mark
Posted 7/17/2016 11:11 PM (GMT 0)
It will be difficult to find an exact template...and if you did find it...then what???....Ah yes... the answer you are looking for...if only life was that simple...it would be...for the simple...You may want to put me on ignore...but no cheating....
Posted 7/18/2016 12:39 AM (GMT 0)
Ehhhhhh.....I am a lowly G8'er.....,do I qualify?
Posted 7/18/2016 1:10 AM (GMT 0)
I'm a G9 that did the Triple Play. Too early to declare success, but so far I have a low and stable PSA. No major SEs to speak of, although I don't pee quite as well as I used to and my testosterone is still low. But all in all, I don't really think about cancer much nowadays.

I think you'll find the most difficult part is the hormone therapy. I did 18 months and it was a grind, although others have done much longer. How long are they telling you that you you'll be on the sauce? Brachy (I had HDR) and IMRT just had transient SEs for me. Particularly in retrospect, they were no big deal.

There are several G9s that are active here that have the same combination....so I suspect others will weigh in.

Good luck to you and if you have specific questions, I'm sure folks would be happy to help!
Posted 7/18/2016 1:41 AM (GMT 0)
Artistic one - I didn't have the HDR component, but would like to simply offer you encouragement.

Here's hoping you're finding some more peace with everything now that you have a treatment plan and are on the path. It's the initial uncertainty that seems the worst to deal with.

How long are they suggesting you do the HT? That's the toughest, most relentless part of this regimen. You won't like it, but you can do it. Usually for high risk they're suggesting 2 or 3 years, and fortunately some recent studies seem to support the shorter duration being as effective as the longer one. Some, such as my MO did, argue to the contrary that 3 years may still be best. Tough call. I hope though by the time you're making that choice we'll have even clearer indications!

The stats seem very good for your selection. All the best!
Posted 7/18/2016 1:53 AM (GMT 0)
Mark,

I'm not a 9, but with 59 PSA and 12 of 12 positive cores I may as well have been a 9.

I did IMRT, HDR brachy, and three years of ADT3. If I actually had been a 9 I probably would have added Taxotere. about five and a half years following all the radiation I continue to be <0.10 PSA and essentially side effect free.

For high risk I think it is a very prudent and effective treatment course. Hit it hard up front. You are about the same age as I when dxd. You will weather the storm well.

Jack
Posted 7/18/2016 2:09 AM (GMT 0)
My signature says it all. No two guys are alike in terms of results from treatment . But my RO believes 13 months of ADT3 is sufficient. But I'll stay on prolia to prevent bone mets . So far so good.
Bob
Posted 7/18/2016 2:17 AM (GMT 0)
Hi Mark, That's me... I know we have talked briefly when you were in decision mode. I am still in treatment so who knows the real outcome until ADT stops in May of 2017. I added adjuvant chemo on the end of my triple play to add one more blast at it hoping I never have to deal with this again. For me and my medical oncologist, it made sense in my case. Yes, ADT sucks... HDBT sucked for really only for a couple of days... IMRT only sucked because I had some bowel issues during treatment. So far chemo has not been a picknic. However with all these sucky things, I feel I was prepared for it all and I have rolled through it. I feel like I am bringing out all the guns and battling the beast the best I can. Feel free to reach out on any particular treatments. Good luck. Take care. -JR
Posted 7/18/2016 4:58 AM (GMT 0)

Bololidat said...
It will be difficult to find an exact template...and if you did find it...then what???....Ah yes... the answer you are looking for...if only life was that simple...it would be...for the simple...You may want to put me on ignore...but no cheating....



Oh...... I wouldn't block you again. I only did that the first day after one of your first replies to a post of mine. I wasn't feeling too great at that moment and was not in the mood for any sarcasm or truthful bull! I now find your comments both amusing and straight to the point. ( which sometimes I need) It really doesn't matter accept I'm just looking for guys going through similar treatment with similar diagnosis. It's important to me and that is all that matters. Looking forward to more from you
Posted 7/18/2016 5:10 AM (GMT 0)

Newton451 said...
Ehhhhhh.....I am a lowly G8'er.....,do I qualify?


I didn't mean to offend. It's not that I'm proud of my diagnosis or think being a Gl 9 makes me special. My apologies . I'm just trying to connect with guy's that have faced or are facing high risk diagnosis that chose the same treatment as I. Just trying to do the best to inform myself as to what I'm doing and what I'm going to experience. I would greatly appreciate any wisdom or advice from you,or anyone else on this forum. I'm quite frankly scared of what is next. Humbly Mark
Posted 7/18/2016 12:29 PM (GMT 0)

Michael_T said...
I'm a G9 that did the Triple Play. Too early to declare success, but so far I have a low and stable PSA. No major SEs to speak of, although I don't pee quite as well as I used to and my testosterone is still low. But all in all, I don't really think about cancer much nowadays.

I think you'll find the most difficult part is the hormone therapy. I did 18 months and it was a grind, although others have done much longer. How long are they telling you that you you'll be on the sauce? Brachy (I had HDR) and IMRT just had transient SEs for me. Particularly in retrospect, they were no big deal.

There are several G9s that are active here that have the same combination....so I suspect others will weigh in.

Good luck to you and if you have specific questions, I'm sure folks would be happy to help!

I can see where Artist Mark is coming from and I believe Michael_T and I were in a similar situation, he being a year or so behind me. Like Michael, too early to declare success but grateful that our SE's are minimal and manageable. No strong urine streams and erections are firm enough, but not as they use to be!
Posted 7/18/2016 2:23 PM (GMT 0)
I was diagnosed as a G9 over 4 1/2 years ago. I did IMRT, LDR brachy, and 28 months of Lupron. My last PSA was 0.26 and I'm currently on a treatment vacation. The Lupron SE's were significant, but the IMRT and LDR SE's weren't too bad.
Posted 7/18/2016 4:29 PM (GMT 0)
Artist Mark, I was diagnosed with Gl 9, 12 /12 cores positive in 11/2011. Robotic surgery in 3/2012. Imrt 5 months later followed by ADT 3. Psa <0.1 for one years so Tried a vacation period but lasted only 5 months. Resumed Firmagon and added Xtandi. Also added Provenge. Psa has been < 0.1 for 18 months. Only an occasional hot flash as s.e. Firmagon for 4 years in 2 months so plan to stop. Feeling well and optimistic. pmikey
Posted 7/18/2016 5:34 PM (GMT 0)
Thank you for your responses. It helps me to know you can understand.

Wedge60, when you stated SE were significant with Luprin I'm wondering did they start right away or did they kind of build and get worse. Also wondering if SE are different with Zolodex or are basically the same drug ,different manufacturer.

My SE don't seem all that bad . My worst so far seem to be fatigue especially in the afternoon. My hot flashes were mild and have seemed to have lessened. Your dx looks much like mine with the same treatment plan. Great to hear you are 4 1/2 yrs out and doing well.

CaliJr, Thank you. You are just ahead of me and it's nice to connect with someone that is close to me in respect that you are relatively new yet just far enough ahead of me to understand. I will definitely keep in touch.

Fox Run, it's good to know you can relate and you had someone to kind of go along at the same time with with similar treatment and Dx. I can see it would be quite comforting to have that.

I just deleted a rant that I posted on here yesterday. My apologies to anyone that read it and found it offensive. After a day of reflection ,I thought it was. Some days I just don't feel very well and I tend to get more upset than others, This is not my usual behavior.
Posted 7/20/2016 12:10 PM (GMT 0)

Artist Mark said...
Thank you for your responses. It helps me to know you can understand.

Wedge60, when you stated SE were significant with Luprin I'm wondering did they start right away or did they kind of build and get worse. Also wondering if SE are different with Zolodex or are basically the same drug ,different manufacturer.

My SE don't seem all that bad . My worst so far seem to be fatigue especially in the afternoon. My hot flashes were mild and have seemed to have lessened. Your dx looks much like mine with the same treatment plan. Great to hear you are 4 1/2 yrs out and doing well.

CaliJr, Thank you. You are just ahead of me and it's nice to connect with someone that is close to me in respect that you are relatively new yet just far enough ahead of me to understand. I will definitely keep in touch.

Fox Run, it's good to know you can relate and you had someone to kind of go along at the same time with with similar treatment and Dx. I can see it would be quite comforting to have that.

I just deleted a rant that I posted on here yesterday. My apologies to anyone that read it and found it offensive. After a day of reflection ,I thought it was. Some days I just don't feel very well and I tend to get more upset than others, This is not my usual behavior.

For the record, it was Michael_T who had the pleasure of being a year ahead of me with the similar treatments and DX and it just as comforting to be able to give back to a place that provided so much comfort to me when I was first DXed.
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