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Posted 3/20/2017 1:47 PM (GMT 0)
Hi
Like all the people here, we wish this was not happening to us, but fate has decreed this. July 2016 I was diagnosed.
I am 65 in May and hope to see 66 and a few more, like most G-9s I have mets in the left shoulder right pelvis and possibly left lower rib, I am on a trial called Stampede, I had a choice and choose this one as the results looked good.
The side effects have not been the best, still have tingly fingers and feet and have acid reflux which I take Meds for,this body has been through a lot, I am on the last part of the trial, radiotherapy, into my third week of four.
I am always interested in people who have gone through simuler and when they finished the trial or tests, what was the outcome and were they offered anything in the future ?
I had one dose of radiotherapy on my shoulder and have cortisone injections to help ease it, I am hoping that when the trial s over I might get radiotherapy on my pelvis, has anyone had this ? Interested to hear of how that went.
I will reply as best I can thanks every one.
Posted 3/20/2017 4:22 PM (GMT 0)
Hi joeven...just wanted to say hello. Sounds like you've drawn a worse hand than I did as a G9, but I suspect you'll be around to see 66 and quite a few other birthdays. Interesting about the clinical trial--I have no insight there, but it will be interesting to see what others might know.
Posted 3/20/2017 8:07 PM (GMT 0)
Hi
I was first put on hormone tablets when diagnosed, my PSA was 893, before chemo was given my PSA had to drop and it did, along with my compleat life style change, at my last blood test about six seven weeks ago has dropped to 0.08.
My shoulder and back are my problems, and my stomach has a field day every time I take some different Meds, I suppose everyone has had anger, depression, and just the why me feeling, it's hard to get by when your so far down the line with this desease.
But I will fight with my last breath to stay with my wife, we have a saying. Me and you just us two and that's the way it's been for thirty six years.
So to all out there any new info I am always reading.
Posted 3/20/2017 10:40 PM (GMT 0)
joeven,
Welcome to the site. Sorry you have to be here. There is lots of great info and insight here. Wishing you the best in your Tx.
Posted 3/21/2017 2:30 AM (GMT 0)
Hi Joeven, sorry you joined the the crew inside of the club no one wants to be in. Sounds like you got a bad hand dealt but it is encouraging that the systemic treatments are working and your PSA is really down. I was not in a clinical trial and do not have mets so can't give advice there but there are plenty of guys here who have. I wish you the best with your continuing treatment journey. Please keep us posted. Take care. -JR

PS. Many more anniversaries are ahead!
Posted 3/21/2017 6:09 AM (GMT 0)
Hello Joeven,
Welcome to HW. I think you'll find this sight to be incredibly helpful and supportive. I think you are right about the STAMPEDE trial showing positive results and your PSA seems to be proof of that. I'm sorry the bone mets are giving you problems. Do you also have lymph mets? My Gary had both throughout his body at dx. His bone mets are no longer an issue pain wise and he has gotten off all narcotics. Read his signature to see the tx and history. Feel free to email me with questions. Click on the envelope below my moniker to get to email.
The tx he had for bone mets was chemo, xgeva, sumarium, xofigo, pelvic radiation x10 and salmon-calconate. Just one tx each on the systemic radiation. Xofigo is supposes to really relieve the bone pain. The pelvic radiation did wonders for pelvic mets.
Like you, Gary's issue has always been stomach problems. Metaclopromide is a daily med, and also omeprazole. Over the years we have also added in varying dosage of zofran (currently 4 mg) and when all else fails, lorazepam sublingual.
He tolerates tapioca pudding and eggs and bagels with cream cheese.
Hope any or all of this is helpful.
Thanks for joining us and best wishes!
Beth
Posted 3/21/2017 12:52 PM (GMT 0)
Hi Beth
I take omeprazole, which is helping and Medroxprogesterone acetate for hot flushes which is also helping.
While on radiotherapy not certain if that's giving me some of the stomach pain. Every time I have spoken to a doctor, consultant, or nurse, I have always mentioned my lower left rib. Because being on the trial I do not know ( yet ) if anything will be done about the rib or pelvis, me being me, I want them sorting before they progress even with my low PSA, as you know at some time this will rise again so killing off areas now does not give it a foot hold in the future.
As regards the lymph nodes I only know of ones near the pelvis.
After reading through all my notes. I had Gleason 5+5 and 5+4 80% of cores affected stage t4.
The only thing I really care about is keeping my PSA down as I am told the PC meta sized but with all the medication extra should be kept at bay while I am on HT and the radiotherapy helps kill off any desease around the prostate.
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