A Special PC Brother I Met Today

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/18/2009 4:06 PM (GMT -6)   
Made friends today at the clinic with a man and his two sisters that I have only seen a couple of times before.  And what a story.  No matter how miserable we can feel in our own journeys, trust me, there are those so much worse than we can imagine.
 
Confined to a wheel chair now, Johnyy, a strong looking, African-American man, 61 years old started his PC journey barely a year ago.  He was mowing his lawn, when he said he felt a sharp pain and fell to the ground with his right leg snapping several times.  To make a long story short,  he has PC in the worse way.  Didn't know it.  Didn't run in his family.  By the time he knew it, had spread through his hips and legs.  The VA amputated his right leg below the knee, his left leg may go next.  They did a 12 core biopsy, and this is too much, he was Gleason 10 in 12/12 cores, 96-100% PC.  The VA did both HT and chemo with him, and he was holding his own until recently.  A breathing issue turns out that the PC has taken over a good portion of his left lung.  THey were radiating him in the lung to try to reduce the swelling so that it doesnt cut off his breathing.
 
THis man was a kind, gentle giant of a person, 6'4", with a great spirit and attitude.  The VA told him this was the direct result of Agent Orange exposure and he gets his 100% disability and lives with his sisters.  He was Army Special Ops in Nam in 1968-69.  He said he remembers on mutilple times in getting dusted by the stuff as they were doing OPs, but never thought any thing about it at the time.
 
WHen they took him for treatment, I had a good talk with his sisters.  I gave them my name, phone number, and email, and since they are fairly local to me, told them I would be glad to come talk to their brother anytime he wants or needs it.
 
Despite his condition, his level of dignity was overwhelming, and all he wants is what we want, to live free of PC.
 
Just wanted to share this unique story.
 
David in SC
 
 


Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


kodiak
Regular Member


Date Joined Nov 2009
Total Posts : 27
   Posted 11/18/2009 5:54 PM (GMT -6)   

David,

      The story brought a tear to my eye, god bless those that sacrifice for our country.And when all looks so bleak there is always someone with problems much worse than yours.Alittle leaking is ok.

                                            Charlie sad


Age 52
PSA4.5
Gleason 6
Robotic surgery Oct29, 2009
Pathology margins good
1 week off cath 1 pad per day
St Clairs hospital, Denville NJ
Dr Colton


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/18/2009 6:55 PM (GMT -6)   
Man, what a story. My prayer list is getting awfully long...

Thanks for sharing, David. These stories put everything in perspective.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4 SA. PSA: 0.0 til July 2009. August 2009 PSA was 0.1, in September it was 0.3 Met with radiation oncologist, CT scan and bone scan clean. Third PSA on October 16 - PSA BACK TO UNDETECTABLE! Next PSA scheduled for early December. No radiation treatment at this time!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/18/2009 7:44 PM (GMT -6)   
Charlie, I must admit, I squirted a bit when I told my wife by phone the story of this brave man.

Sephie, I only hope I can meet with this guy again one to one, his sisters say hes fighting a lot of depression (understandably) and has few personal friends since he has become ill. He told me he finds so few of his generation around that understood the whole Viet Nam thing.

I hope I get a call or an e-mail from him. Depiste his medical plight, and knowing he can't be long for the world in the normal sense of things, he had his head up high, and still wanted to live his life on his terms, to the best of his abilities.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/19/2009 8:18 AM (GMT -6)   
A bit off topic (apologies in advance) ... I work for a children's charity north of NYC. We help families of children with cancer and other serious illnesses. Our help includes financial, emotional and advocacy support. The stories of some of our kids - and their incredible bravery and acceptance of their plight - sometimes makes me hang my head in shame. Yesterday, we learned of a 17 year old who was diagnosed with leukemia about 2 years ago and has had 2 relapses. In addition to all of this, her dad was diagnosed with stage IV lung cancer but is able to continue working full-time (that's amazing in and of itself). Daughter and father are treated at the same hospital in New York City, and daughter is preparing for her second stem cell transplant. The mom is the caregiver for both of them. This family is amazingly strong and they see each day as a gift, and worry about tomorrow when it arrives.

It's stories like this family's - and your friend Johnny's - that make us pause and reevaluate our own situations. I give thanks every day for what I do have.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4 SA. PSA: 0.0 til July 2009. August 2009 PSA was 0.1, in September it was 0.3 Met with radiation oncologist, CT scan and bone scan clean. Third PSA on October 16 - PSA BACK TO UNDETECTABLE! Next PSA scheduled for early December. No radiation treatment at this time!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/19/2009 11:10 AM (GMT -6)   
Wonderful and encouraging story there, Sephie, that family is going through a lot. Sounds like a very worthy cause you work for, sure you have seen all types of harsh cases.

I look forward to seeing Johnny again today, and find out if there is anything he would like to make his life a bit easier right now. That's the trouble when you are sitting for almost 2 months in a radiation clinic, no one is there for fun, and everybody there has something seriously wrong with them to start with.

You do great work, Sephie,

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 11/19/2009 4:29 PM (GMT -6)   
Thanks for reaching out to this guy, David.  I'm sure he appreciated talking to someone who knows what he is going through.  Thanks for sharing. David

Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 11/19/2009 10:02 PM (GMT -6)   
David, That is a sad story indeed. I pray to God to comfort and help him.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/19/2009 10:13 PM (GMT -6)   
Thanks, David CPA, was disapointed I didnt see him today, not sure if he was too ill to come or what. will see tommorow perhaps.

At the outside level, Ed, it was sad, but to see the look of life in his eyes, and the love of his sister in caring for him was just as touching in a positive way.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 819
   Posted 11/20/2009 11:40 AM (GMT -6)   
Dave, that is very sad, but I thank you for sharing this very moving story.

DJ
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)
4/23/09, 07/30/09, Oct 2009 still undetectable!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/20/2009 12:57 PM (GMT -6)   
He's a great guy, hoping to see him this afternoon.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place

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