Long Story- first post

 

I have been lurking for more than a year, debating for months on  joining...privacy concerns and such.....however, after some recent events here at HW, I feel compelled to join...what a group of truly caring, supportive people...with amazing friendships. I have been doing the local support group thing for years and have developed friendships, but nothing like what I've seen here...so here goes my story:

I was dx in August 2002 with a PSA  of 4.7 and a Gleason 3+4,Staged T1c.  I did an open r/p in October....the post surgery  pathology was poor.... upgraded the Gleason to 4+4 with  micro mets in both the seminal vesicles and 1 lymph node out of the 16 sampled.Stage III. What a total shock...what was thought to be an early highly treatable cancer turned to be anything but!!!! Anyway, after surgery my PSA stayed < 0.05 for about 18 months, then started up....when it reached 0.17 I did SRT.....driving the PSA back to <0.05 for another 18 months. It then began a slow rise taking about 3 1/2 years to to reach 4.65, at that time I started ADT 3...... again my PSA dropped to <0.05 and stayed there for a number of months, I then came off ADT3 and within 6 months PSA up to 1.86 so I started ADT3 again...... this time my nadir was only 0.12 and PSA started rising again (this was back in Oct 2011)....it rose to 0.53 by March 2012. At that time I entered in a Clinical Trial @ UCSF with ARN-509 ( similiar to MDV-3100) and my PSA has now dropped to 0.19. Along my journey, I've had some extremely unpleasant side effects....the worse were abdominal adhesions as a result of the surgery...which resulted in numerous Small bowel obstructions...putting me in the hospital 7 different times over the last 6 years. In addition I got very sick every couple of months but fortunately the obstructions would clear. I finally found a surgeon that cleared these  out last year with a major open surgery... this after consulting with 5 different surgeons who wanted no part of helping me !! Now it has been a year with no attacks !!!! Also every couple of years I end up passing a substantial amount of blood in my urine.....thank you SRT !!  I've had 3 cystoscopies all of which have shown mild radiation damage. It has been a long journey, but  I have had way more better days than bad,  I'm almost 10 years out with a controlled PSA for now. I have great docs @ UCSF. I also consult with Dr. Lam in Marina Del Rey....life is still good, not withstanding the  on going fear involved with each and every test, and every belly ache....sort of like a post tramatic stress . Anyway I'm glad to come out of the darkness .I  just  may be able to help others a bit and would welcome support as well.

Welcome Ziggymonster to our forum where we ask only one thing from our members and that is we do all we can to help our fellow PC brothers in their need to fight the beast we call PC. I found HW 2 months after my surgery last year and it has changed my life so much more than my PC ever will. I just returned this weekend from the memorial of life for the wife of one of the most compassionate and caring members in this forum who lost her 6 year battle last week with her beast. If you have followed this forum for the last year you should have seen references about something we call GFMPH which is a non exclusive gathering of the guys and gals who are members of this forum. We meet in the Spring and Fall and we have more hugs and laughs than anyone can imagine. My attendance the last 2 gatherings has provided me with friendships with guys like Raddad that will last our lifetimes. As one very popular member here often says "It is amazing how this crap we call PC has brought us all together to foster friendships that we never would have otherwise"

I think you can provide a lot of information and experiences to our members with your long 10 year fight with the beast and hope to see many more posting and perhaps a personal appearance to one of our gatherings.

Terry the Water Guy

Welcome to the Forum, and thanks for posting rather than lurking. Your journey so far has been a difficult one, but it appears things have now reached a point where it's settled down into something liveable and manageable. Congrats on winning that struggle. 10 years---my, that's a long time for most of us here to contemplate. Thanks for sharing and giving some of us hope-and proof- that there is longterm life after PCa. I hope you become a regular participant with us, there's friendship, support and help available to any who ask.

Ziggymonster. Welcome to Hw. The guys above said it best. You have so much to share. Thanks for joining. By the way I know each of the guys that posted before me. I must agree with what they have said. The GFMPH guys and gals have enriched my lifeless than I could ever explaine.

Cajun Jeff

Also glad you decided to join our merry little band, the brotherhood here is for real (sisters too of course). We are a pretty tight family.

Your story and experience is definitely worth telling. Things don't always go right, and according to plan. I was left permently disabled because of SRT myself. It left me with severe Cancer Pain from nerve damage, as I received all my radiation on an empty bladder (as opposed to having a bladder full of water before each treatment). It left me with severe chronic pain and fatigue, and the radiation destroyed my bladder and bladder neck, forcing me to have a Urostomy (stoma). So I can feel your pain.

Looking foward to getting to know you better, so please keep sharing your journey with us.

David in SC

Ziggymonster
Welcome to HW, the home of compassionate, understanding and wonderful people. This is a forum where you can share your happiness, scream, rant and rave and let out all your emotions. Everyone here will understand. Glad you decided to join and come out of the darkness.

My husband was on a dosing study for ARN-509 in New York. He did very nicely on it for quite some time. His SE were minimal. He was dosed at 90 mgs. and I believe the dose went as high as 320 mgs. If you don't mind, I would be interested in knowing how many mgs. you are taking. I hope you will have much success with it.

I'm so sorry for all your pain but am happy to know that you are having lots of good days.

Zimac

Thank you all for the kind welcome...it is appreciated.   Ten years is indeed a long time....with my pathology I was sure I wouldn't still be on the "north side of the dirt " (northern hemisphere)after this long  , but as others have said there is  so much in the works for those of us with advanced/advancing disease which gives real hope. But like so many of us here there are days you just get tired of dealing with this disease. While I'm very lucky to be in a trial...it requires blood work every 28 days, then 2 days later more blood work, EKGs, and every 90 days CT scans,Bone Scans...and of course a Lupron shot every 84 days...and not to forget a monthly visit with both the doctor and clinical trial coordinator.I get worn out thinking about all this. (Zimac I'm taking ARN-509 @ 240 mg daily)

Again thank you all

Ziggymonster  ( BTW this is my beautiful black min poodle who as a pup was totally out of control)