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S1216 Clinical Trial, booted out today- ain't working for me

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Prostate Cancer
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Posted 8/15/2014 6:34 PM (GMT 0)
Met with my Oncologist today to discuss my recent PSA rise and the fact that the S1216 Clinical trial appears to be no longer working for me.

Today was also the day I was supposed to get my next 3 month Lupron Shot. So I went ahead with that, gotta have something in my body fighting for me right now.

I basically dis-enrolled from the trial. But I also met the guidelines for being booted out of the trial anyway. I told him and the trial coordinator I really didn’t care how they wrote it up or what they called it. But I took in all the TAK700 I had in my possession and gave it back. I quit taking it yesterday.

One thing about the TAK I really didn’t talk about here, is the side effect possibility of anorexia. I can’t totally nail it down to the TAK, but I do know that my appetite has been lessoning over the last few months. When I started the trial in February I was about 179, when they weighed me today, I was 170. Not a really big loss in 6 months, but when you are on Lupron, you’re supposed to have to fight the weight gain, right? The biggest problem for me was that I did not enjoy eating anymore and most of the time it was just a hassle to figure out what to eat. So now that I am off TAK, bring on the pounds, well at least a few anyway.

I also discussed with my doc the appointment I have scheduled with Scholz, Lam and Turner next week. As I suspected, he had no problem with this.

So Lupron shot today, Turner appt next Tuesday, PSA test September 5th, 5 weeks traveling vacation (GFMPH) and then I will figure out what’s next.

Feel pretty good about all of this. It is probably too soon (may just be the excitement of the day) but on the way home I stopped at McDs and bought two chicken wraps, fries and a large coke. Finished it all!!

What a “Bonus Day” today is,

Sonny
Posted 8/15/2014 6:38 PM (GMT 0)
Thanks for the update Sonny. Been following with interest!
Posted 8/15/2014 7:23 PM (GMT 0)
Sounds like it is time to move on Sonny, and you are scheduled to see some experts. McD's will get those 9 pounds back pretty quickly. That was a large fry, right?
Michael
Posted 8/15/2014 7:38 PM (GMT 0)
SonnY:

How long have you been on the Lupron?

You are doing fabulously on the weight gain issue!
I had no problems for maybe 8 months and all of a sudden I was just eating all kinds of CRAP.The pounds kept coming on.
I am 5' 11" tall and my normal weight for many years has been in the 175-182 range. On HT, I eventually balloned to 202.

I have been trying to get it off since I stopped the HT 5 1/2 months ago.

I now seem to be stalled in the 190-192 range.

Good luck with your meeting with Turner

But, seriously, ask about adding Casodex to the mix. I know you are very concerned about the SE.

But I have a feeling your brand of PC is very similar to mine. It seems ours kind of moved in tandem (G-score, PSA rise, SRT no help). The only difference was our tx. path. You got some great years free of HT and now you are doing the HT. I know the combination worked for me (but probably not for that much longer).

Anyway, it is worth asking and I'll be VERY curious to see what Turner says (and your impressions of him -- I have heard nothing but good reports about him).

Incidentally, you will find their office to be amazingly unassuming. Small waiting room. Also, you said your next PSA will be next month. I know for me they tend to do the bloodwork when you come in and before the appointment is over they have the PSA result. They are the NICEST folks working there, and VERY responsive to your needs, requests, etc. The UNDERSTAND customer service. At least that's what I have found!

Mel

Post Edited (compiler) : 8/15/2014 1:47:44 PM (GMT-6)

Posted 8/15/2014 8:05 PM (GMT 0)
Thanks guys.

Mel, today was my third shot, so I have completed 6 months. The SEs have been very minimal. The weight thing is not too much of a bother to me. I could probably use about 10-15 pounds anyway, I am 6'1". I have always been slight of build and as long as I put the weight on the right way (exercise, strength training, nutrition) I will be fine with that.

At one point about 4 years ago I had ballooned up to 220 and I embarked on a lifestyle change that shed 35-40 pounds in 4-5 months. But I must admit that with all that I have been involved in the last 4 years, I have gotten away from that.

My son is a many times certified personal trainer and he says that he has putting a training/nutrition plan together for me. His goal is to teach me the proper form, range of motion, etc. while I am out there. I have to admit this is kinda cool to have my son taking this kind of interest in making me as healthy and strong as I can be.

A little over 15 hours til I leave for LA and I am stoked and excited on a number of levels.

Sonny
Posted 8/15/2014 8:19 PM (GMT 0)
Sonny -- keep the weight off. I think all my additional weight congregated in the abdominal area. The weight is now coming off, but probably not from that area!



Good luck Sonny. Enjoy your time with your son.

As you know, when we go out there, we visit our daughter.

Going out there to see a cancer specialist is no fun. Combining it with a family trip is wonderful!

Mel
Posted 8/15/2014 10:11 PM (GMT 0)
Sonny,

Been following your journey since Feb. Trying to learn all that I can about PCA treatments.

See you in NY!

Dave
Posted 8/15/2014 11:09 PM (GMT 0)
Well Sonny, I guess that is why they call them trials. Sorry the TAK didn't give you the results we were all hoping for. But you have a great trip meeting some of the best in business and with your son. That combination has got to produce some positive results for you. I know your 5 week trip and NY GFMPH will no matter what. Really glad to reconnect and looking forward to seeing you again.

Heck, I remember deleting pictures of us because you made me look so FAT standing next to you. Not this time buddy, I am down to 180! Hope I can keep it off in NY...
Posted 8/18/2014 1:48 AM (GMT 0)
Sonny hope you get some direction in cal.

Cajun Jeff
Posted 8/18/2014 2:01 AM (GMT 0)
Sonny....Jeff informed me of your situation tonite. Please know you're in our prayers. We're looking forward to seeing you in Sep in NY...Jeff will make sure you put on some pounds while in LA, I'm sure.
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