My Journey ~ TC-LasVegas

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/5/2008 5:09 PM (GMT -6)   
OK, James, you asked for it! LOL...careful what you wish for...
 
Well I never had a single thread.  I have posted over a thousand times in many smaller threads.  So when James C put the request out there for journey's, I had to think of what I would write...I guess a chronological order of events.  Most who know me know I have a few other sites I post at, but it started here after my diagnosis.  HW was the gem of support forum's when I set out and still is.  It seems so long ago but this is how it started out.  I want to make a point first.  This has been quite a trek!  But it is one of winning!  I am who I am, and have stayed close to my faith.  I know it's not for everybody, and I have toned it down here at the request of some.  So my old references are as toned as I truly am.  Please forgive me.
 
October 3, 2006 - In a routine physical my PSA was drawn.  I was just 44 years old.
October 10, 2006 - PSA was 19.8, Retested.  referred to a urologist.  Dr. Zommick
October 17, 2006 - While in Urologist, retest results from prior week were 18.9.  Dr. Z suggests antibiotic after I told him there was no family history.  Also on this day, stress at work and the uncertainties there, I put in my notice and left my job of 16 years in November.
December 5, 2006 - Another PSA result was 13.8, biopsy recommended.
December 12, 2006 - Biopsy done, 8 sample taken.
December 19, 2006 - The day that changed my life forever. 4 of 8 cores positive for Adenocarcinoma.  PNI.  80% on three cores on left side Gleason 3+4=7, one core on right side was 60% 3+3=6.
December 20-24, 2006 - Aside from a bone scan, confusion, no sleep, searching the web, I was scared.  But at this point I did not know if our Christmas would be our last. Ruthie finished the Christmas shopping.  But we both were not in the spirit. I had cruised over a few forums, including this one.  But most of my time was spent learning about PCa.
December 25, 2006 - I don't remember this Christmas.  I had already told my parents.  And we spoke everyday.  It was a somber day, but we were staying positive.  My son was still living with us, and that was a blessing. 
December 26, 2006 - I had read enough to know I had a real issue.  My numbers were an indication of an advanced disease.  Knowledge was needed ~ badly.  Again I stayed up after midnight on my PC and posted at HealingWell.  Here is that post ~ My first at HW! 
 
In the coming days, I decided to get a second opinion.  I learned about Peter Carroll in San Francisco, Marc Kawachi and Tim Wilson at the City of Hope.  And after talking with others I selected Wilson and gave him a call.  I had heard of him before, he was a well known specialist.  And CoH was close to family and I could be with those I loved.  It took a couple days, but he called me at 9:00pm on January 7th.  He said he had an opening in February.  A date was set and here is what the next days held for me...
 
Until we left for surgery, I posted here many times.  I am a bit adventurous, and I was trekking around the Southwest in our RV, visiting Zion National Park, the Grand Canyon, and as a musician as I am, I visited several weekend festivals ~ Bluegrass and the like.  I wrote about them several times here.  I still do those things, but not quite as much.  In fact the weekend before surgery I was at Zion hiking and simply loving what I referred to as God's Country.
 
February 14, 2007 - We arrived in Duarte, CA.  I had pre-surgery screening that took all day...Happy V-day Ruthie!  Sorry I wasn't in the mood!
February 15, 2007 - The night before surgery.  Ruth and I ate dinner early with my sister, mom, and dad.  This first time I sat at a dinner table with my mom and dad together since they divorced when I was 8 years old. 
February 16, 2007 - Da Vinci Surgery at the City of Hope.  I wasn't really nervous.  I had already accepted that this had to be.  I remember being carted into the operating room clearly.  I remember the anesthesiologist saying we was starting the flow...That's it...Lights out.  I do remember feeling my gut hurt as they brought me back to consciousness - still in the OR.  But I rested until I was in my private room.  Ruthie was at my side when I woke.  She told me that Dr. W. had said there may be an issue.  He had removed a bit more than normal and had to stop near my rectum so to not damage it. 
February 17, 2007 - Ruthie's birthday!  OK at this point I'm down a valentines day, and now her birthday!  I got her a catheter to clean that year! LOL
February 16-22, 2007 - Mr Hang!  I had that catheter for 8 days, but it really was not much more than a nuisance.  I walked about a mile a day with it, increasing daily.  But uneventful (Lest you want revive the memory of removing one of these things).  On the 22nd they did remove it but told me there was a delay with the pathology results...I didn't think much of it.  I was real nervous, though.  After what Wilson had told my wife after surgery, after all I had learned, and my numbers...
February 23, 2007 - I was out with my brother in law, so I wasn't with Ruth when Dr. Wilson called me.  He told me that the pathology was confirmed and that I had advanced prostate cancer.  He did not get it all, and time was needed to determing the extent of the spread.  He did say that he removed 10 lymph nodes and they were clean but that my seminal vesicles were bilaterally involved as was quite a bit of surrounding tissue.  I was stunned.  I asked him what was next.  He said Chemotherapy, Hormone therapy, and radiation.  He said to not delay it and he recommended that I work with Dr. Nicholas Vogelzang back in Las Vegas.  He told me that I was lucky to have him there as he had just moved to Vegas and was a world reknowned oncologist.  Now, I did not feel too lucky about anything that day.  But I was and just didn't know it.  My pathology was in ~ TNM = pT3B, N0, Mx Gleason 4+3=7 SVI, EPE, HGPIN and possible mets. 
February 28, 2007 - I walked into the Nevada Cancer Institute earlier than expected.  I was told there was an opening if I wanted to take it.  Ruthie was back at work, so I was alone when I met Dr. V.  I was impressed with him, and he confirmed what Dr. W. said, and he already had the pathology report.  He said all the choices from this point had to be made by me.  All treatment options were contraversial.  He spent three hours explaining the options and submitted me for a study.  He took another PSA and it came back at 0.9.  He said I likely was stage 4 but that he would test again.  This time 0.1.
March 23, 2007 - 3rd test after surgery.  It was run STAT and I had the results in an hour...UNDETECTABLE!  He said it was great news and he did not expect it to drop down that far, but he said we still were not done.  In his experience as a specialist in prostate cancer, he told me that we could possibly try HT and hold off elsewhere or go for the study that included chemotherapy.  I know a couple guys that did this study, and I elected to go for it.
May 19, 2007 - The study was declined due to a clerical error at Johns Hopkins.  I was asked again if we should try for an extention, but I declined.  I had already spent a lot of time with the NVCI radiation oncologist, and against the advice of Dr. V. I told him that what I read was that adding radiation seemed right.  We started HT immediately, and IMRT in June. 
Thanksgiving, 2007 - This was a milestone for me.  I had completed RT and spent somequality time with my mother.  She appeared in good health, but that wasn't the case.  I have a great memory of this day. I started my blog this week and have kept it current.  It was intended to be a discussion about prostate cancer but much of the next couple months it was about cervical cancer.
January 1, 2008 - My mom went to emergency with complete renal failure.  Further investigation of the coming days revealed terminal cervical cancer.  We expected a year, or more.  I didn't worry about my cancer hardly at all.  Also in January I became a moderator of this forum.  That carried some more weight I wasn't quite ready for.
March 6, 2008 - My mother died.  4 months of moderate depression followed, exaserbated by the HT.  I wasn't myself and finally realized it.  I stopped being a moderator here, I needed to get the depression under control.  I mention this part, because it is a real challenge for those who are on HT to control emotion and avoid depression.  It takes every effort to be aware of how you are affected emotionally and physically to control falling into depression.  I didn't do a good job initially, but I have found an inner peace that allows me to move on and stay positive.   We, the guys who have advanced disease and are taking these drugs, have to do that. 
 
Today -  As time has evolved, I have been through several cycles of highs and lows.  I am still undergoing HT every 4 months with daily Casodex at 50mg.  We have done quite a bit better than expected.  My depression is totally better.  I have a scheduled appointment in January that will hopefully be my last HT injection.  That will last until May where if still undetectable, I will stop all treatments.  I still get nervous at test time, but it is what it is.  I will likely have some tests after treatments stop that will be real nerve rackers.  We are hopefull we can maintain good tests, at least for a while, and if necessary, go back on HT if there is biochemical relapse.
 
I am very happy with where we are today.  I have been through enough and I want to stay and try to help others.  I am 98% continent, and 100% ED.  But still kicking and undetectable.  Ruthie and I are not afraid anymore.  No time for it.  Instead, I volunteer, blog on several sites, and give time to charities.  Things that I would never have done much of before PCa.  I also have converted to my wife's religion from my mom's.  I will be confirmed in April.  These are things that I love to do.  We enjoy every day better than ever.  I have yet a new blog to share ~ www.myspace.com/tonycrispino. There I combine my musical passion with theological passion (which involves another passion).  I have written to many musical artists and my new hope is to start a new charity ~ Country Artists Against Prostate Cancer.  This is moving along slowly, but it is picking up steam.
 
I am sorry if I am too winded here.  It is my journy!  Pretty crazy, huh! 
 
I have had one motto through all of this ~ Stay Postitive!
 
 
 

My PSA History

October 3, 2006                 19.8

October 10, 2006               18.9

November 27, 2006           13.9

Surgery February 16, 2007

February 28, 2007              0.9

March 12, 2007                   0.1

March 23, 2007                 <0.1

May 16, 2007                   <0.1

July 18, 2007                   <0.1

September 19, 2007         <0.1

January 29, 2008              <0.1

May 9, 2008                     <0.1

September 17, 2008         <0.1

January 17, 2009              Next test!
May 2009                         Stop all treatments ~ God willing ~ Durable remission!
 
Options Remaining!
Watchful Waiting - If I stay undetectable after HT, or if all other treatment options stop working after a relapse. 
Vary the HT treatments - try to acheive a remission after relapse, by changing treatment methods (for example drop Casodex or add/or Finasteride, etc.)
Orchiectomy - Attempt to further lower angrogens by surgical castration
Ketoconazole - 2nd line HT
DES - 2nd line HT
Nilandrun - And other 3rd line treatments
Taxotere - Chemotherapy
Clinical Trials
Faith, Love and Hope! (ongoing)

 


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

Post Edited (TC-LasVegas) : 10/6/2008 10:40:42 AM (GMT-6)


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 10/5/2008 7:50 PM (GMT -6)   
What a journey! Keep the faith friend!!! We are all in your cheering section!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 10/5/2008 9:01 PM (GMT -6)   

   Hey Tony...what a story.  You are the kind of person that makes HW such a great place.  Keep up the good fight.

    KW


    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 10/6/2008 9:40 AM (GMT -6)   

Tony,

Your journey has been incredible both from an adversity perspective, but moreso from how you have managed to embrace the adversity and find your way to a positive place.  You demonstrate the inner strength that people admire. 

I think about the leaders in the world and you are amongst them.  You are someone who has the gift to provide others direction just by virtue of your actions and response to your situation.

Keep up the good fight.  Keep it up for yourself and those of us who want to see you continue to thrive.  When leaders fall, we all fall.  Think of us as your army.  We will take your lead and follow you into battle because you give each of us the strength to fight. 

I read of a cancer patient who wrote of himself, "People call me a hero.  I didn't want to be hero, I just wanted to be a regular guy."  But people don't choose to be heroes.  They become heroes.  And, Tony, that is what you have become here at HealingWell. 

Doug
 
43 yo. now
 
5/07 PSA 4.65 at routine physical
6/07 biopsy Gleason 7 (3+4)...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision.  I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - RRP at Northwestern Memorial by Dr. William Catalona.  Thankful the father of the PSA test was right here in Chicago.
Post op path report confirmed Gleason 7 (3+4). negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  
9/27/07 - catheter removal...let the games begin...
12/31/07 - threw out the pads (I only had used 1 pad per day for protection against minor drips)
 
I started Trimix 8 weeks after surgery with success.  I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
 
9/17/08 One year past surgery and doing well.  PSA less than .1 and ED continues to get better and showing reasonably good results using Levitra which for a long time did nothing. 


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 10/6/2008 7:14 PM (GMT -6)   
Tony

You are really a Trooper. Keep it up!!!

Mika
age at dx 54 now 56
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
Tossed the pads this spring
ED still a problem
first year PSA less than zero
 

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