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JLH
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/27/2007 8:45 AM (GMT -7)   
On May 2, 2007 I had a radical prostatectomy. My doctor originally said my stay in the hospital would last 2 or 3 days. It ended up being for five. The next day after the surgery I had a stoke caused by a blockage in my left vertebral artery.  Other doctors said I dodged a "bullet" concerning the stroke. When the stroke occurred I was just lieing in the bed when suddenly I felt an annoying buzz in my left ear. Then immediately I felt my ear lobe begin tingling and going numb; it then went down the left side of my face, throat, shoulder and left arm to the finger tips. Fortunately, all of this subsided after a few hours, except for tingling in my finger tips. My urologist said he thought at first it was just the way I was positioned in surgery. However, after telling my nurse about my feelings she informed the doctor she thought something more serious was going on. Tests were ordered and indeed she was correct. I feel really blessed that I had a veteran nurse of 30 years who pursued this for me. I am now being treated with blood thinner - surgery not possible. A few days ago my blood pressure started bouncing around, so on a temporary time trial my primary-care doctor has put me on high blood pressure medicine.
 
For the last year and a half I have experienced several kidney stones which had to be removed by extraction or by lythotripsey treatments (around 10 hospital out-patient sessions). During one of these treatments I discovered I was a diabetic and in between another treatment I discovered I had ulcerated colitis. I feel all of the anti-boditics played a major role for the colitis by possibly killing off the good bacteria in my digestive system. Along with these aggrevations I also have to deal with polio and post polio syndrome and also have stinosis of my spine (neck).
 
Now, getting back to the Prostectomy, my primary doctor has been checking my PSA for several years. My number has never been over 1.2 until February of this year it jumped up to 4.0. Fortunately, I always ask for my blood work reports. I would suggest everyone do this. The doctor never said anything about this. It was when I got home and had turned to the last page I noticed it. It was not flagged, but I already knew that anything over 3.0 was considered suspicious. It just turns out I was scheduled to see my urologist to check the status of two kidney stones that are still onboard. He said he was glad I brought this report. He set up ultasound and biopsy session. The exam showed no irregularities. It turned out after the biopsy report I had cancer with a Gleason score of 7 (I think). Today I am dealing with incontinence. Hopefully, this will go away. I am doing the Kegel exercises. I wish I could exercise and take the 30 minute walks that are suggested, but the Post Polio Syndrome does not allow over-doing it. Today I am celebrating week 8 from my surgery and tomorrow I will celebrate, God willing, week 8 from the stroke.    
 
Just looking at me you would think I am a "picture of health". I am 58 years old, 5' 8" tall and weigh 170 pounds. I have never smoked nor have I ever even tasted liquor of any kind. Even with all of these aggravations I feel very fortunate that God has spared me. I hope to do more for Him.
 
Thanks for reading,
 
JL
 
 

veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 6/27/2007 9:11 AM (GMT -7)   
Jl.
That's an amazing journey. You are a true survivor.

I hope and pray that your overall health improves even a little.

I was really putoff when you mentioned your doctor not catching a rising PSA. I basically like doctors. Sometimes, however, I feel they are a little negligent
in after-care followup. After the "big show" (primary treatment) is over, I've noticed my doc's casual attitude.

Glad you were smart enough to catch it.


All Good Thoughts
Vet1

Rick Roma
Regular Member


Date Joined Jun 2007
Total Posts : 37
   Posted 6/27/2007 9:31 AM (GMT -7)   
JI..... I am flabbergasted at reading this truly
I am... God should cut out my tongue for the complaining I have been dealing after reading your journey.  I have been through a few procedures, but nothing to compare waiting right now for a prostate biopsy report to come in.  And unfortunately I have all the bad habits you don't.  I just know there is a light at the end of your tunnel talking about this world, not the next and God will see you through all of these opticals... truly truly wish you the very best........... Richard
There is a special church here nestled deep
in the forest.... a beautiful bell hangs at the very top.... it only stops ringing.  When you come through the forests for your voice takes its place....   Richard


anniea
Regular Member


Date Joined May 2007
Total Posts : 234
   Posted 6/27/2007 2:00 PM (GMT -7)   
Hi JLH!!!
Sounds loke you have had to deal with alot of health issues. Please have your Doctor do a dopler test on your cartoid artery. The test is like a ultra sound of your neck but it could prevent you from having further strokes. My father had 2 strokes the 1st one being mild and the 2nd one was massive. back then they didn't do dopler tests but it sure could have prevented him from having the 2nd one. My husband was having TIA's a few years back and when they did his dopler test one side was 98% blocked and the other was 50% blocked, the surgeon simply roto-rooted the one side and placed a stent and all symptoms are gone. I go once a year for a dopler test.
I wish you the best of luck with your health issues. You have found a GREAT place for support with this group of truly caring people.
Rick & Diana (aka anniea)
Rick & Diana
Diag: 2-14-07 Gleason 8 Stage T1c PSA 5.09
Bone Scan 3-1-07 Clear
Radical retropubic surgery 4-2-07  Post surgery Gleason 9 Stage T3a Positive margins
4-29-07 PSA 0.02
 


JLH
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/27/2007 3:21 PM (GMT -7)   
Thanks for your response. While at the hospital they did do an ultrasound for my neck and for my heart. These turned out ok except for two leaky valves which I was told were insignificant. They also did a Cat scan of my head by first injecting dye in my veins. They then discovered a blockage in my left vertebral artery which is at the back of my head. I was informed that this blockage was 100% and there is no treatment for it except for blood thinner type medication. Currently it is impossible to do any kind of procedure for this type blockage. No stints, bypass, or surgery for this blockage.
 
Again, Thanks for your input,
 
JL 

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/27/2007 5:54 PM (GMT -7)   

Hi ~ JL,

 

tongue  Caring Enough to Share…..  yeah   

 

Thank you for taking the time to share your journey’s with all of us.  It truly does make one realize that our stepping-stones may not be as big or as wobbly as we think they are.  At the time ~ “they definitely are”!!!!   We each travel many stones that are the same but because we are all different in physical and mental states… we heal and recover at different rates.

 

In reading about your exercise limitation… if you are able to do a few stairs… this will help you tremendously.  And the walking ~ do more short walks throughout the day rather than a few long walks.   Do what works for you!!!  

 

“God Bless You”  on your 8 weeks on the recovery/healing stepping-stone from surgery and the stroke!  You are truly meant to be here ~ and HealingWell welcomes you with open arms.  Thank you for caring enough to share.

 

It's a little prayer  ~  "God BlessYou" ...but it means so much each day,

It means may angels guard you and guide you on your way.

 

The Sharing of “Your Journey” is a precious gift to all of us!  Heartfelt thanks.  Your physical stats are close to my Buddy. 54, 5’9”, 162 lbs.  We are here for a reason and I truly believe it’s because we are to be a voice for prostate cancer….  Our “chirp~chirp~chirping” greets anyone and everyone we meet….  Making them aware!!  Like you ~ my Buddy was/is a picture of health.  People are shocked when they find out that he’s battled this disease… and continues to move forward with such a positive outlook on life.  Recently ~ we saw the look of fear on 2 loved ones faces as they shared their story of their husband/brother having been diagnosed.  And to walk away from that conversation knowing that we helped lessen their fears….was a true blessing for us.  Our new friends (husband Mika *mvesr,  wife Dale, and sister Kay) are now sharing their “Journeys” with others. 

 

Keeping you close in thoughts and prayers…

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

J  We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

 

 « bluebird ~ Moderator for Prostate Cancer Forum


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 6/27/2007 6:11 PM (GMT -7)   
Hey JL,

You obviously have a survivor's instincts. Your story inspires us all and gives us hope that we can indeed overcome this disease. Thank you so much for helping us on our journey.

Good luck and please stay with us, we need you...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.
Next PSA on 7/18/07.
 
 "I have cancer but cancer does not have me."


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 6/27/2007 7:04 PM (GMT -7)   
Sorry to hear about your troubles. Makes my leakin seem not so bad after all.

Good Luck
KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


AEG
Regular Member


Date Joined Nov 2005
Total Posts : 154
   Posted 6/27/2007 7:39 PM (GMT -7)   
Hi JLH,

We're so glad you found this site. I’m so sorry for all that you’ve been through. Your positive attitude and optimism are surely impressive, you are truly an inspiration. I wish you a full and speedy recovery.

Our thoughts and prayers are with you. Please keep us posted.

Best of luck to you.

AEG

JLH
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/28/2007 8:07 AM (GMT -7)   
Since I am new to this forum I would like to reply to each response but do not see anything that allows that. Should I try to respond to all in one post? If so, I will have a hard time doing it. Sitting at the computer really does a number on me after a short while. Please enlighten me if I am overlooking something. I have been most pleased with all of the encouraging words.

JL

M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 6/28/2007 10:38 AM (GMT -7)   
JL - one post to everyone would be fine. someone else might know if there is a way to send a direct response to each person, but I don't know. You are a survivor! thank you for sharing your story and keeping the faith. kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump


Rick Roma
Regular Member


Date Joined Jun 2007
Total Posts : 37
   Posted 6/28/2007 10:38 AM (GMT -7)   
jlh... I am glad to hear that all our e-mails are encouraging you.... don't feel you have to respond individually. It's not necessary...... the importance is that you continue to do better..... still waiting on my biopsy really making me crazy.

Richard
There is a special church here nestled deep
in the forest.... a beautiful bell hangs at the very top.... it only stops ringing.  When you come through the forests for your voice takes its place....   Richard


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 6/28/2007 2:32 PM (GMT -7)   

JL:

You have certainly had a full plate and your positive outlook will aid in your recovery.  I can relate to the stroke after surgery.  Mine was the opposite - I had a slight heart attack with stent put in followed by rehab - had to delay my treatment and began the day after rehab ended.

As for a reply to each and every post - don't think it's necessary - a simple "thanks to all" would suffice.  We're not here for praise but to help and support.

Best of luck to you as you recoop.

Dutch

 


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001
Have had no side effects.
6yr PSA - 0.19
 
 
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/28/2007 3:56 PM (GMT -7)   
JL - God Love Ya!

Thank you for sharing with us the trials you've been through. Because you're a fighter, it gives us courage that we, too, can deal with tough things that life brings our way.

Don't be sitting at that computer too much - we want you to get your rest!

All the best to you,

Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows distant lymph node involvement
Restage IV Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3
06/06/07 - 0.1


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/28/2007 5:09 PM (GMT -7)   

  tongue    JL ~

One posting ~ reaches us all!!! yeah

Proof is seeing the # of views your thread has received.  191 views in less than 36 hours…

 

This “Hug” is for “You” !!! 

 

Your gift/message to all of us is to HealWell new friend…

Keeping you close in thoughts and prayers as we all travel together toward HealingWell.

In Friendship ~ Lee & Buddy


JLH
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/30/2007 5:22 AM (GMT -7)   
Would like to update you all. I am delighted my PSA number is as the technician told me, a BIG FAT ZERO! The doctor told me to come back in three months for the next check. However, the doctor has started me on Levaquin for six days because of a urinary tract infection. Hope this knocks it out.
 
I am still having problems with leakage. No problem sitting or when in bed, just when moving around. I found a site where one of there products that you can order halts leakage with a product called "Dribble-Stop." It clamps, well you know where, and aids in this matter. Hope this not come to this. Has anyone of you used an item like this. It claims to be perfectly safe.
 
Thanks,  JL    

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/30/2007 4:59 PM (GMT -7)   

Hi ~ JL,

 

You are on a very special stepping-stone…. Healing/Recovery….  So  ~ Please take time to let your body heal.  It is a stone that we try to step off of too soon and the body will definitely let you know!!! Listen to your body… and if you think you souldn’t do something… Don’t!!!!!

 

I am attaching an excerpt that we followed during our recovery…  Again ~ take time to heal before you start looking into any devices for urinary continence…  We all heal at different rates… so please take the time…  you will be the one who benefits from it.

 

Our thoughts are with you as you continue to move forward!!!  In Friendship ~ Lee & Buddy tongue

 Excerpt: Page 246

**After the catheter is removed….

     > Until your urinary control has returned to an acceptable level, don’t force fluids. 

 

>Once the catheter is out, you’ve got to slow the pace considerably.  Avoid drinking excessive amounts of fluids, and stay away from caffeine in all forms---coffee, tea, even soft drinks.  Caffeine, especially, is a powerful pharmacological agent that increases the frequency and urgency with which you need to urinate.

 

 

 

**Urinary continence: The return of urinary control:

 

 

**Phase One is when a man can remain dry when lying down.

 

**Phase Two,  you’re dry when you’re walking around.

 

**If you can walk to the bathroom and not urinate until you get there, that’s a GREAT SIGN!!!…

    ---it means that the sphincter is intact.

 

**Phase Three, you are dry when you stand up (using muscles that put pressure on the sphincter)

   after sitting.

 

**Remember, the recovery of urinary control is a slow process.

 

The most important thing you can do during this time

is not to get discouraged.

 

 

Excerpt: Page 244

**It’s hard to believe, but urinary control does continue to improve over two years and, in an occasional patient, even longer than that.

 

**Can you do anything to speed things along, and improve your urinary control?  First, whatever you do, do not wear an incontinence device with an attached bag, a condom catheter, or clamp!  If you use any artificial device, you will hurt yourself in the long run.  You won’t be able to recover your urinary control, because you won’t develop the muscle control you need.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/30/2007 5:02 PM (GMT -7)   

Yea !  ~  JL,

1st……PSA…   !!!~~~>>>  Woo~Hoo  <<<~~~!!!

 

Cause  for   celebration!!!!!  Definitely!!!

                            What a wonderful day it is ~ each and every-day…. 

                                                      Enjoy it to the fullest. 

                                                                                                                          Yippeeeee!!!!!! From  Lee & Buddy

*     *     *     *     *     *

The ultimate “goal”… we all strive for… Thank you for sharing ~ that your goal has been met….

It is very important to “all ”of us!  This is a way of positive feedback…

A way of showing others Hope… and a way of Sharing.  

J  Caring is Sharing ~  Thank You for Sharing  J

 


JLH
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 7/2/2007 7:34 PM (GMT -7)   
Thanks bluebird for the advice. I will do as you advise and forget the clamp. Tomorrow I go to my GP to review my blood pressure log. With the BP pills I have been taking my BP is now averaging around 112/68. A couple of times it went down to 110/62, which I wonder if this is too low.
 
I mentioned in my original post that I am dealing with diabetes. I am happy to report my blood sugar is currently averaging in the low 120's. I so far have not been required to take any medications for it. To me it is nearly impossible to go by the strict dietary rules set for this illness. But I have been able to avoid soft drinks, cut down on breads, and deserts.
 
I noticed that ulcerative colitis is a very "Active Topic" here. I feel fortunate I went to the doctor early and only have to take a maintenace program of  4 pills a day. In the beginning I was passing substantial blood, but currently I have not noticed any more bleeding.  
 
When I was first diagnosed with prostate cancer I was very afraid. When I look back, I think the full body scan was the most frightening thing for me. There have been several members of my family that have had some form of cancer. I was extremely relieved when it came back negative.
 
 I will be seeing a cardiolgist on July 17th about the stroke I had. The neurosurgeion I saw said the stroke was most likely caused by a circulatory issue. The doctor I will be seeing is a D.O. doctor specializing in cardiology. Supposedly D.O.'s look at the whole body and not just one issue. I took my wife's doctor directory and asked him if he could recommend one (24 on the list). I was really surprised when he checked off four as being excellent and he even told me three (one an emphatic NO!) to stay away from. He of course told me not to mention this to anyone because of the possibility of slander. I assured him I would not divulge any of this conversation to anyone. I am glad he felt he could trust me. I wished in the beginning I had discovered this site, what a greater benefit it would have been.
 
Thanks everyone for your kindness,
 
JL

fralink34
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 7/2/2007 8:00 PM (GMT -7)   
My husband just completed 42 treatments of radiation which
we survived without any complicatons. Our biggest concern now is the catheter,
which he has had for 4 weeks and he's looking at 2 additional weeks. Is there
anyone who has had it longer?
Jfmaye

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 7/3/2007 7:33 AM (GMT -7)   
Congrats on the PSA test result!!! Sounds like other health issues are in control for you, too.

There are many of who wish they had found this site sooner!

All the best to you JLH,
Susan

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 7/3/2007 1:25 PM (GMT -7)   

Fralink34:

Saw your question - have no answer, but have a suggestion.  You might get more answers if you started your own thread - afraid you might get lost here.

Just click on New Topic - select a title and ask again.  Hope this helps to get an answer to your question.

Best wishes to you.   

Dutch 


Diagnosed Feb 2001  (Age 65)  Currently 72

PSA 4.8      Gleason 3+3=6      Stage   T2b

Completed Proton Therapy @ Loma Linda - Aug 2001

Have had no side effects.

6yr PSA - 0.19

 

  :-)    Radiation and the Catheter Started by: Fralink34:  Post edited to add direct link… :)


Post Edited By Moderator (bluebird) : 7/4/2007 6:15:30 PM (GMT-6)


JLH
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 7/5/2007 7:25 AM (GMT -7)   
Thanks Susan and Thanks to you Dutch.
 
JL

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/18/2007 7:53 PM (GMT -7)   

tongue  Hey JL,

 

Thinking of you ~ and hope to hear from you soon on your update from yesterday’s appointment.   Touch base ~ okay!!  yeah    In Friendship ~ Lee & Buddy

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