Just a Quick Update on One of the HW Sisters- My Lynn

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Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 1/11/2011 2:03 PM (GMT -6)   
Lynn received her 2nd blood transfusion last night. I think it took longer than my da Vinci. We got to the hospital at 9pm as directed, it was 12:25am before they started the transfusion, it took them 50 minutes to get the line in her arm, poor baby has had it rough with all the needles (in fact they experienced what the called a vein blowout during the process). We left the hospital at 2:50am this morning.

As you know, her current chemo therapy is the culprit in this blood problem and the doc had taken her off the program for 4-5 weeks until we get her blood back to good numbers.

Well just a little while ago he called and told Lynn he needed to see her next week. Seems as though this program is not helping at all. The latest test of her cancer numbers show that the bad stuff has tripled since her test in November 2010, right before they started this new regimen.

At least with all that is going on this weekend with her dad's funeral, she won't have much time to sit around and dwell on this latest development.

Since I have included Lynn and her journey so much in my posts, I thought that I should let you know what is going on.

As always she sends her love to you all for the support you have shown both of us.

Bless You All,

Sonny
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 1/11/2011 2:09 PM (GMT -6)   
 
Sonny,
 
I am so sorry to hear of Lynn's latest setback.  Our thoughts and prayers are with you both especially this weekend with Lynn's Dad's funeral. 
 
Jerry1

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/11/2011 2:18 PM (GMT -6)   
It is plenty to handle brother, such double burdens in fighting diseases....the fact that you do it with very good tact is an inspiration for some others. My brothers wife still dealing with the same disease as your wife...so far had managed into year 2.5 approx., but is a serious on going battle. Your situation is alot rougher and compounded. Everybodys blessings will be going your way.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/11/2011 2:23 PM (GMT -6)   
Sonny,
We are always thinking positive things for both you and Lynn. It's absolutely fine that you keep us posted on her progress and challenges.

May peace be with you both...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 1/11/2011 2:36 PM (GMT -6)   
Thanks for the update Sonny. Hope they find a regimen that corrrects the numbers and puts her on a healing path. Your both in our thoughts.
Michael

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 1/11/2011 3:06 PM (GMT -6)   
Gee, sonny, lynn sure is having roller coaster ride right now. I know she is aware of all our love and prayers for her. Tell her anyway... :-)
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 01/11-.09
ED-total-Bimix 30cc

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/11/2011 3:31 PM (GMT -6)   
Sonny, sorry to hear about her numbers going south. Hope they come up with a new plan for her soon.

As I'm writing, I'm sitting in a hospital room at Northwestern (University) Memorial Hospital with my laptop watching my wife get her first transfusion. She had a "port" installed in December, so no more messing with finding her veins...have you considered requesting a port for Lynn? It's a small surgical procedure to install ("twilight" anesthesia) which took about 3-hours total from check-in to check-out.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 1/11/2011 3:31 PM (GMT -6)   
Sonny and Lynn - you are both in our thoughts and prayers - from north of the border -
gentle hugs,
Bronson and Steve

p.s.your catchphrase sums up what many of us are dealing with, and seeking comfort with - "every day is a bonus" -

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 1/11/2011 3:48 PM (GMT -6)   
Sonny and Lynn, I so heat this news. I hold you hand in this difficult time and I walk with you. My love to the both of you.

Jeff and Pat
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 1/11/2011 3:49 PM (GMT -6)   
Sorry to hear about Lynn's latest battle. Hoping that the doctors will come up with a new battleplan to help her get the numbers where they should be.
 
Larry

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 1/11/2011 3:49 PM (GMT -6)   
Sonny, sorry to read about Lynn's numbers, but thank you for giving us a report. Lynn is truly an HW PCa sister.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

spottydog10
Regular Member


Date Joined Dec 2009
Total Posts : 348
   Posted 1/11/2011 4:06 PM (GMT -6)   
Sonny,
wishing all the best to you and Lynn.
Mike

Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 288
   Posted 1/11/2011 4:13 PM (GMT -6)   
Breaks my heart to hear about the rough times hitting Lynn.... our wives are the kindest creatures on earth but also the toughest. She'll be in our thoughts.

Jake (and Kathy)
Dx 8/08 Pre-op psa 4.2, Age 60, 7 of 12 biopsies positive 3+3
DaVinci LRP 11/08, - margins, - EPE, vascular or perineural. Gleason 3+4=7, 5-10% of 4.
3 mo psa .1 2/09, 6 mo .1 5/09, 9 mo .2 8/09
broke ankle bones 6/09, 9/21/09 Bone scan clear, psa still .2
01/05/10 psa .3, SRT 01/19/10 start 39 sessions 70.2gy, psa @ 6 wks into IMRT .4; Post SRT psa @ 10 wks (5/10) .2, @20 wks .1, @8 mo still .1

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/11/2011 4:24 PM (GMT -6)   
Sonny, my brother, just walked in the door and read this post. My heart sunk immediately. I don't know what to say, but that Peggy and I give the two of you our total support and care and love. Her poor veins must be having a fit. When I had this last op, I was so dehydrated, it took 2 nurses a total of 5 painful tries to get a "baby" IV started, most unusual for me.

You guys have more than enough on your plates, funeral and all. Wish there was some way to distribute some of this load around to all of us here, I would volunteer to take my fair share.

Of course you should keep us posted, Lynn is a bonifide sister member of us in great standings.

Call me if you need anything directly.

david and peggy in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 1/11/2011 4:45 PM (GMT -6)   
Sonny:
 
I don't know what to say.
This whole situation is truly so so sad.
 
Hopefully, there will be another plan and more successes.
 
My heart goes out to you both.
 
Mel

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/11/2011 4:54 PM (GMT -6)   
Sorry to hear about the treatment setback ----- between you both you sure have had more than your fair share of burdens. I sure hope to see things turn around and give some relief from the rough times ------ you both are in my thoughts and have my best wishes for an improvement.
Bill

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 1/11/2011 5:24 PM (GMT -6)   
Hi All,
This is Lynn. I have just read all of your heartwarming blessings and can't tell you how very much they are appreciated. I have been amazed by your support and I truly do feel like a sister participant in this forum. You all do so much to lift my and Sonny's spirits.

It seems that so many people focus on the negative. I wish they could experience the blessings Sonny and I have experienced since our diagnosis - from the many prayers, the ongoing support, and even the amazing efforts of people who don't know me to hustle out and donate blood to me to help with my recovery. I, personally, will cherish every act and every moment.

I wish the best to each and every one of you as you fight your own battles. I will continue the fight and I hope to meet many of you in Baton Rouge this Spring.

Love to all of you,
Lynn
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 1/11/2011 5:33 PM (GMT -6)   
Well after all Lynn you are a member her you attended the last GFMPH at WorriedGuys house. You evern got a chance to see just a bit of Paul's workshop.

Love you Lynn.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 1/11/2011 7:27 PM (GMT -6)   
Jeff, Lynn just read your post and immediately cracked up laughing. She vividly remembers the "Blue" tool of rehab. Thanks for reminding her, now I may have to go out and buy her one.

Sonny
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 1/11/2011 8:44 PM (GMT -6)   
Lynn and Sonny,
 
I can only give you my best wishes and condolences. I'll be looking forward to meeting you in April!
 
 

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 1/11/2011 9:03 PM (GMT -6)   
Sonny and Lynn,

It's hard to imagine that a couple of years ago I never heard of you guys, yet tonight I have a lump in my throat as i think of your struggles.

I wish there was more that i could do to help you. Prayers, good thoughts, warm wishes, etc. All seem so little at these times, yet they are sincere, and you know that many of us would fly to Fla to give blood if wevwere needed to.

In one moment i feel so unlucky to have been diagnosed with PC, and at the same time, so lucky to have rubbed shoulders with some of the finest people I have ever has the pleasure of meeting.

God bless you both.

Goodlife

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 1/11/2011 9:10 PM (GMT -6)   
Lynn,
Thanks so much for the kind words and taking the time to write. If you ever decide to divorce Sonny, could I have the first dance? Hope that all goes well with your new tx regimen and keep us posted.
Michael

clearwatercowboy
Regular Member


Date Joined Oct 2009
Total Posts : 135
   Posted 1/11/2011 9:23 PM (GMT -6)   
Lynn and Sonny,

Well, like all of the others that read and post on this forum, Jeannie and I are saddened to hear that the chemo. therapy regimen is not working for you. As you both know, we have a pretty good understanding of this type of cancer, and we share your frustrations with these persistent set backs.. But, know that you both are in our thought and prayers throughout these days. In addition, we are pretty good sounding boards, so when the urge hits, give us a call.

We wish you a safe journey to TN tomorrow, and our hearts go out to you and your family.

Hugs
Dallas

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/12/2011 11:14 AM (GMT -6)   
bump
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 1/13/2011 5:07 PM (GMT -6)   
Sonny and Lynn,

Sorry to hear about this latest news. I can't add much to what's already been said except that I think you are both exceptional individuals with incredible resolve and attitude.

It was a pleasure meeting both of you at GFMPH.

Mike
-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving. ED oral meds didn't do much initially. TRIMIX was working very well. Initial dose of 0.1 mL too much. Had priapism at 0.075 mL that ended up in a humiliating ER visit. Doses recently after 50% dilution by Uro about 0.025 mL or less. Don't use Trimix anymore...I'm too sensitive to it, even at very low doses and the Alprostadil is pretty consistent in causing erection pain...had a few episodes of 3+ hour wood with pain.
-Levitra now starting to work at low doses of 5 mG to 10 mG. Sometimes the side effects like stuffy nose aren't fun...sometimes OK.
-Was supposed to see ED doc last week, but due to his schedule, will now be late August. Will discuss bimix with him.
 
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