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Casper319
Veteran Member
Joined : Apr 2011
Posts : 771
Posted 6/27/2016 8:24 PM (GMT 0)
Haven't posted in a long time...thought I'd send an update.
As you can see by my profile, I've done IMRT, HT for last 5 years, Xofigo for 9 cycles, and 1 year of taxotere. My Insurance qualified me for Provenge but by then I was on Narcotics for bone pain and I didn't qualify. Ive also had spot radiation to the back and hip. I also had Zytiga which worked great for 13 months and also Xtandi which didn't really do much for me.
In December, the cancer ate through my left femur and caused it to break in half so I had surgery to emplace a pin/rod through the inside of the bone down to the knee. Still on 1 crutch trying to walk normal again.
Just last month...my Dr. decided to test me for a DNA test to see if I had a BRCA II Gene and sure enough...I came up positive for it. Ive also been on Xgeva for 3 years but had to stop because I had a small hole in my mouth down to the bone root so my dentist had me stop that which my Med. Onc. agreed.
Once I found out I was BRCA II...my Dr. put me on a chemo. used for Ovarian cancer called Lynparza (Olaparib) Side effects are a little rougher than taxotere.....more Nausea and weakness. But after just 3 weeks of it....my PSA went from a 1097 to a 333! Does this sound legit? I haven't seen my Dr. yet but I get my PSA/Blood work results online. I see him once a week right now because of the fact I was allergic to Taxotere and had to be given extra pre drugs to control that...and the new chemo is a pill form which I take at home. I hope like heck this is for real but that much of a drop in 3 weeks makes me wonder if a mistake was not made....anyways I see him this Thursday so I will see what he says. Chris
Wings of Eagles
Veteran Member
Joined : May 2013
Posts : 1250
Posted 6/27/2016 10:41 PM (GMT 0)
Chris,
I also read your story on Yanow, sorry to hear of your troubles and pain. Good though,to hear the update on the PSA drop down to 333, hear is hoping for another 66% drop next test. (was the last PSA on your profile prior, or another update? )
Keep the Faith Brother, from one Kasper to another Casper,
Dan Kasper in So CalF
CaliJR
Veteran Member
Joined : May 2015
Posts : 787
Posted 6/27/2016 10:51 PM (GMT 0)
Hi Casper... darn, you have been through the ringer, but glad something is working well now. Take care of yourself battle brother. -JR
Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 6/27/2016 11:40 PM (GMT 0)
This is great news, and yes, it does sound legit. You may recall another HW member, John Keats, on a clinical trial for a similar PARP inhibitor also had an excellent improvement of his PSA. I'm glad they discovered you had the mutation -- it's rare.
- Allen
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 3388
Posted 6/28/2016 1:42 AM (GMT 0)
Hello Casper319,
You've been down in the trenches, soldier ... you've walked across some battlefields along the way.
You richly deserve a MEDAL OF VALOR for bravery on the field of battle ...
You've pursued some treatments, had some setbacks, but also some meaningful successes along the way.
VERY thankful to hear the news of your new treatment strategy --- that's a tremendous PSA drop --- very encouraging to hear your news from the battlefront.
Your new treatment --- it's kickin' in --- it's working --- it's already having a powerful effect --- and I'm thankful to hear that, Casper319.
Stay in touch, keep posting, stay strong in the battle !
Handshake across the miles,
Iowa State University CYCLONE
logoslidat
Veteran Member
Joined : Sep 2009
Posts : 7585
Posted 6/28/2016 2:52 AM (GMT 0)
Best wishes Casper...thats a rough experience...hope this turns the page now...and better days nights...
Casper319
Veteran Member
Joined : Apr 2011
Posts : 771
Posted 6/28/2016 4:17 AM (GMT 0)
Thanks for the feedback guys.....always appreciated. And Tall Allen....I think I do recall a poster about
that but couldn't find the post. I hope youre right and the 66% drop is legit. This is especially encouraging since My Dr. Put me on half the normal dose to see how I react to it....this week he upgraded me from 8 pills a day to 12 so maybe I will see an even greater drop.
logoslidat
Veteran Member
Joined : Sep 2009
Posts : 7585
Posted 6/28/2016 5:15 AM (GMT 0)
Your sig shows "new psa" 51...is that befor the significant rise and that significant drop you refer to in your post.. Your a fighter
Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 6/28/2016 5:42 AM (GMT 0)
Here's one of his posts:
www.healingwell.com/community/default.aspx?f=35&m=3071356
don826
Veteran Member
Joined : May 2008
Posts : 1010
Posted 6/28/2016 10:57 AM (GMT 0)
Casper it is good to hear from you. I hope that the new drug is the cause of the drop and that it continues to help you. There are some treatments meant to strengthen bone and prevent bone mets that may be available to you. I am taking one called Xgeva. It is a shot given once a month or once every three months. My most recent shot caused me some pretty severe SE's but it was given with a chemo injection so not really sure which was the bad actor or if there was synergistic effect.
Casper, I hope this new drug does some good for you.
Don
browntrout
Veteran Member
Joined : Apr 2014
Posts : 683
Posted 6/28/2016 12:29 PM (GMT 0)
May your PSA readings continue dropping and your SEs diminish.
PDL17
Veteran Member
Joined : Oct 2011
Posts : 688
Posted 6/29/2016 1:58 AM (GMT 0)
Great news regarding the new treatment. You are a great inspiration and you deserve a big break. Praying you get one.
Paul
Casper319
Veteran Member
Joined : Apr 2011
Posts : 771
Posted 6/29/2016 8:46 PM (GMT 0)
Thanks all and TA for finding that link. And yes, I do need to update the sig...
60Michael
Veteran Member
Joined : Jan 2009
Posts : 2702
Posted 6/30/2016 1:56 AM (GMT 0)
Chris I have a lot of respect for your tenacity. Wishing you the best of outcomes.
Michael
Kate33
New Member
Joined : Nov 2016
Posts : 3
Posted 11/28/2016 11:00 PM (GMT 0)
Hi.
What side effects did you get from Radium 223. My dad has had to infusions so far but is suffering badly from fatigue and very bad pain? Are these normal side effects for Radium 223? I'm very worried about
him.
Kind regards
Katie
Pratoman
Forum Moderator
Joined : Nov 2012
Posts : 9890
Posted 11/29/2016 12:30 AM (GMT 0)
Caspar, tough run of luck. I can tell you that Lynparza has worked very well for BRACA + women with ovarian cancer. So every reason to believe this is real. Hope things turn around for you, sounds like you are on the right track.
Casper319
Veteran Member
Joined : Apr 2011
Posts : 771
Posted 11/29/2016 10:29 PM (GMT 0)
Well Kate...I really didn't notice any SEs at all from the Xofigo....I finished that up a couple years ago.
Don...I tried Xgeva for 3 years....and now I have osteonecrosis....where my lower jaw is rotting away and I have a hole in my lower jaw and lost one tooth with another soon to follow. I had to stop Xgeva because its been known to cause that. My mistake was staying with my normal dentist who wasn't an oral surgeon and he didn't know much about
it. I had to go see a Oral doctor and he told me theres no cure for it. gave me anti biotics and mouthwash and said that's it....see me again in 3 weeks.
Unfortunately I found Insurance does not cover that disease and I had to pay out of pocket.
Xgeva gives you an 18% better chance of not breaking anything..so for me it wasn't worth it.
The new chemo was working good...my PSA went all the way to 94...but it was killing my bone marrow and I had to have 2 transfusions in a 6 week time period. The last one I was admitted in the hospital for 3 days and took 4 bags of blood. My doctor took me off the Lynparza for now for my body to recover some.
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