Hi I'm from the old Yahoo group.
Dx in 2013 w 8 of 8 cores positive, gleason 8-9, mets in lymph.
Received HDR radiation, EBIMRT 23 doses, ADT for 18 months.
Currently off treatment and being monitored every 3 months, PSA .17.
No Avodart or other meds right now.
Best to everyone.
JorgeW
Best to you too!
Jorge, my Dx in 2013 similar to yours. Mets in your lymph node and now you are at .17. Encouraging info. My biopsy showed 12/12 Gleason 10. all above 95 %. T2c. Some perinural invasion. Lupron this past 30 mos. 42 sessions IMRT last Autumn. T at 17. ( got me at temporarily reduced energy level ) February 2016 PSA at .06. This coming Wed. get Lupron shot to complete 1 whole year of ADT after IMRT....then this August, based on PSA, may be able to take a "Holiday" from the Lupron. I'll feel good if my PSA this Wed. is below 1.0 Again, thanks for that info. Hoping you and yours are enjoying this Springtime weather, take care ! Steve Thomas
Steve, I know all cancers are personal, but your cancer looks a lot like mine, but you are slightly further down the road than I am. I had surgery in December, Gleason 9, I also had cancer in 5 pelvic lymph nodes and positive margins. Post-surgical PSA was 0.06. Got my first Lupron shot three months ago and the PSA went down slightly to 0.05. My urologist sent my cancer samples out for a Decipher test and they came back placing me in high risk for metastasis (0.88 Decipher) so I'm starting radiation in July for 39 treatments. On the whole, the side effects haven't been too bad. No sexual function since the surgery but that's not a huge concern for me at the present time. The one kind of weird thing, and no one else has reported this, is the Lupron has affected my hands pretty significantly. Within two weeks of getting the shot, my joints and knuckles started hurting, especially in the morning. I have 4 trigger fingers, which get better during the day with movement and then hurting again during sleep and in the morning. I am wondering if anyone else has experienced this? My urologist suggested that I'll probably be on ADT for 3 years, but I'm also excited to see that people take a break from it for a while before resuming treatment. I'd love some relief for my hands, though I'm really early down my treatment path. I've set up a first consult with a medical oncologist, first because I'm not sure when the appropriate time is to bring in an oncologist, and then also to discuss the Lupron and maybe other options instead? I'm thinking that most oncologists don't think it's appropriate to discuss other chemo treatments until I become castrate resistant, but if there is something I should be doing to extend the length of time before i become castrate resistant, I'd like to be doing it. Best of Luck!
cfrees - I have experienced the same triggering in my fingers when I was on Zoladex first, then Lupron and finally tried Degarelix. It's called Stenosing Tenosynovitis = inflammation of the tendon sheaths and possible nodule growths which seize the fingers and cause the triggering. I was only able to do 18 months on ADT and had to take a break. One other guy in our PC support group had it worse than me and had to eventually have surgery to release his fingers - not to scare you - be sure to talk w your doctor. I got some relief by soaking my hands in hot water then cold in the mornings and squeezing sponge/rubber balls to keep my fingers mobile. Hope your is managable.
JorgeW
oh, thanks for that. my urologist seemed to suggest that it wasn't a common reaction to ADT. If I'm looking at ADT for a vast majority of the rest of my life, I would definitely consider trigger finger sugery. I talked to an orthopedic and he said that is was very minor and very common. So could definitely be worth it. I would say that it's not debilitating by any stretch, but it's annoying for sure and painful when they get stuck like that. I appreciate your comments and definitely will consider the minor surgery.
cfrees1 I also had cramping in my hands. My Onc. prescribed BACLOFEN. Off label use: normally used for treating Depression, but it knocked out the hand cramping quite well. Also, to offset hand muscle loss, I use a hand excercise devise while watching TV, reading, etc.
That's very impressive, Jorge! Congratulations & best of luck!
Neal (I was a lurker in the old group)
JorgeW,
Glad you came over to the new group.
Joel
Thanks everyone for the well wishes, much appreciated - and success to you all too.
And thanks to you Joel and your staff for the great support site for us.
JorgeW
Hi JorgeW!
Glad to see you here. My question is a learning for myself question.. Why are you having no more treatment? Are you doing a watchful wait? My best to you.
Jackie
Hi Jackie - glad to answer - When I was first diagnosed in Aug of 2013, I had several choices for treatment as you must already know - my Oncologist & Urologist offered an aggressive treatment with ADT, HDR (high dose radiation) and IMEBRT (intensity modulated external beam radiation) - they gave me a 20-25% of cure (who knows) and so I took that option. After the HDR, EBRT and 18months of ADT I was having severe side effects from everything - especially the ADT which was affecting my hands,feet and other things. Since I had done 18 months and my PSA was stable they decided to give me an off treatment break and monitor my condition (actively with surveillance - PSA (every 3 months) and another scan). So that is where I am at currently - and holding my breath and hoping like everyone being treated for PC.
Thanks so much JorgeW. That's what made me curious of why one stops. Yes, severe side effects would make one stop. I hope all works out wonderfully. Keep us posted 
Jackie
Progressing metastatic prostate cancer
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