An update on life

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M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 4/9/2007 4:42 AM (GMT -7)   
hello everyone,

I just wanted to post this update on our journey. Jeff and I were talking this weekend about the frustrations of ED 7 months post-surgery and life in general. He was expressing his frustrations of using the pump (how he doesn't really like the experience so he won't use it for therapy) and we talked about how 8 months ago he had cancer. and how excited we are now that he doesn't! we used the pump Saturday night and were able to have intercourse the old fashioned way - missionary position. this is the first time that happened since the night before surgery, so needless to say, we were excited about that. but more importantly, Jeff was excited and kept saying "I'm closer to feeling the way I used to - like I'm a whole man again." He definitely relates his manhood to achieving those erections and I keep reassuring him that I'm thrilled the way things are and love him no matter what. but we all know that we feel what we feel when we feel it. I also had a small scare last week in that I had to have additional magnified mamograms because they saw a suspicious area, but thankfully that turned out to be nothing. whew! so life goes on...spring is here...Jeff is enjoying his corvette again on these sunny days. so even though I've been a little quiet around here, I have been reading the posts, and I appreciate all of you very much! God bless, 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


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 4/9/2007 5:53 AM (GMT -7)   
Kat,

Glad to hear that Jeff is feeling more fulfilled these days. I can relate well to his frustration. I had not taken any Viagra for several weeks and also have not been exercising with the pump. Just for the heck of it I took a Viagra last night just to see what would happen. I got about a 50% erection which while not good enough for penetration is the most I have ever gotten with Viagra. It also made me feel that maybe there is a light at the end of the tunnel. I look forward to being able to get back to the old positions that we like so well.

Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
Catheter out on 11/13/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07


Birdland
Regular Member


Date Joined Aug 2006
Total Posts : 31
   Posted 4/9/2007 10:33 AM (GMT -7)   
 I know it's not for everybody, but Trimix injections have been doing the trick for me. I was unattached when I was diagnosed so I really got depressed when I saw that most of the guys already had a partner that was committed to seeing them through this. i thought I would wait until I got "better" but
I ended up dating a fantasitc women shortly after I started injection therapy. Fast forward and we've been having a great time with my chemically induced erection. I hope to be recovered and not need this in the future because it's awkward. I also still leak a little so I have to deal with that embarassment, but it's been all worth it.
 
Also for those guys who haven't been doing anything to get an erection, remember that those tissues can become damaged over time if they don't get excercise. I believe this so I'm following orders and staying with my therapy...three injections a week and a low dose of Viagra on the off nights.
 
So I guess that's it
 
Birdland

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 4/9/2007 11:34 AM (GMT -7)   
Hi Kat,

Glad to hear that Jeff is encouraged about potency. Like you told him, my wife tells me that I am still a man but we guys would like some physical confirmation of that fact! I am still at less than 25% of an erection with chemicals and stimulation. When my T level bottomed out, I lost all progress that I had made after surgery. Getting back to it now a little bit.

Hey Birdland,
Congrats on finding a "fantastic woman"!! Now, that is real incentive to get the old potency back!!!!!!

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 7/11/07.
 
 "Cancer feeds on fear - starve it to death."


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/9/2007 1:17 PM (GMT -7)   

Hi ~ Kat,

 

What a wonderful posting… I truly respect you for opening the door that was a little open about discussing ED issues…. And you pushed the door wide open and made our guys and gals feel so much more comfortable about discussing every issue!!  You truly are a very important forum family member.  Special Hugs to you and Jeff.

                                                          Thank you…  for you!!! 

In a previous posting you asked us about ED issues a year after surgery…  Because we chose the “wide-excision” we knew there would be no ED issues.  We both made this very personal decision together.  Our relationship was and is very strong and we are doing extremely well in all areas.  Taking each day as it comes and enjoying it to the fullest.  Planning for the future but as I always told my mom...  If I died today ~ my life is totally complete!  I will be ready for my next Journey.  And having had prostate cancer has truly made “TODAY” the best present we can open our eyes to!  And we love gifts that we can return ~ so Here’s our gift to you…. A Special Hug!!

 

Each partnership is the same but different!  And for us we wanted to go the extra mile to make sure the cancer cells are gone…  We will continue to watch the PSA scores just as others do…. But deep down we both feel strongly that our decision was a wise decision and the right decision ~ for us!

 

Kat ~ I can imagine what went through your mind with the mammogram results.  Snaps us back a few steps doesn’t it.  We are highly tuned to everything now.. and we have to learn to pull from the strengths that we all know are there!  Keep us close!

 

Our thoughts and prayers continue to be with each of our forum family members.  As we all travel the same path toward HealingWell… In Friendship ~ Lee & Buddy

 


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     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
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/9/2007 1:20 PM (GMT -7)   
Adding this link to help keep the journey together!!! yeah

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Thread Started by: M.Kat

 

RP surgery scheduled for Aug 30 

M.Kat


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     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 :)


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 4/9/2007 1:46 PM (GMT -7)   
Hi there! Posting on this thread, but question directly to Bluebird . . . .We understand your personal decision, but since you are being very open about this, would like to ask a question . . . . . .couldn't Buddy still go for the Trimix injections to obtain an erection??

I'm just curious, because Bob was only spared one nerve and the doctor says that one remaining nerve was traumatized so much it may take forever, or never to recover.

Although we obtained the Trimix prescription and went to the training and first injection by the urologist,, Bob has been unable to get up the courage to "stick" himself "THERE" . . . .he's feeling pretty frustrated.

So, my post here is twofold . . first the question to Lee and Buddy . . . .second the problem part open to discussion.

Also, thank you Birdland for submitting your experience . . . finding a new partner is so wonderful, but I'd think you'd have even more hurdles to deal with and you've mustered them. Did you have problems at first with "sticking yourself" and if so, how did you overcome this? Bob is getting really annoyed with himself. I'm being supportive and patient, but he's frustrated.

;o) Linda
Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER!  Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more aggressive, previously undetected cancer)      PSA UNDETECTABLE November 2006 AND February 2007.   
 
Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us.


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 4/9/2007 4:35 PM (GMT -7)   
Hey Linda,

Bob's reluctance to stab himself echoes my fears exactly. I have avoided any discussion of shots with my ED guy for that reason. However, it may have to come to that. Hopefully Bob can find a way to get past the fear and pass that along to the rest of us.

Thanks for posting this concern...

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 7/11/07.
 
 "Cancer feeds on fear - starve it to death."


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 4/9/2007 5:01 PM (GMT -7)   

Dear Kat, thanks for this post.  I know that you guys must be incredibly frustrated, yet you endure and live.  I'm a little annoyed that Jeff has a Corvette and I don't, however!  I always enjoy reading your posts and feel like I know you in some way.  As someone said recently,  'my faceless friends'.

Beautiful, just beautiful.

Regards,

Bill

P.S.  I hope things are looking up for you soon!


Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!
Began IGRT January 23, 2007. 


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 4/9/2007 6:13 PM (GMT -7)   
Dear Kat

I am so happy to hear some good news from you and Jeff. While Jeff has had a long frustrating journey after surgery, hopefully things will continue to improve. It is good to hear that you are also reflecting on things that you are very thankful for. Best of luck and all good wishes. We too appreciate you Kat!

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.


Birdland
Regular Member


Date Joined Aug 2006
Total Posts : 31
   Posted 4/9/2007 7:56 PM (GMT -7)   
Responding to Lawink
 
about sticking myself...I guess after all the cutting and poking and catheters, I made up my mind that I would do it. I was really nervous, especially when I did it my first time at home. In the beginning, I would fill the syringe and put it in the fridge and at some point I just marched into the bathroom and did it. I kept telling myself "this is therapy, you need to do this to get better" . Anyway I've done 34 injections at this point and I hardly feel it as long as I avoid any veins. It's mostly a mind game. You just have to talk to that little voice that's keeps trying to make a big deal out of a little prick...boy is that ever a loaded statement.
 
Birdland

lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 4/9/2007 11:03 PM (GMT -7)   
Birdland . . . tongue tongue yeah

Thanks for the supportive comments. So far he's filled two syringes total - each has been taken out for attempts that lasted over an hour and eventually we threw them out being worried about them being at room temp for so long. Eventually it's gotta happen.
;o)

M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 4/10/2007 4:21 AM (GMT -7)   
Birdland, so glad to hear that all is well with you and that you found a fantastic woman. I am laughing about your comment about a little prick. too funny!! Jeff did discuss the injections with his doctor but is avoiding them. he figures as long as he's getting improvements in erections, he'll keep using the pump and cialis. Linda, I know how Bob feels. at least he's gone so far as having everything ready. I'm not sure I could stick myself (or Jeff) either! 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


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/10/2007 8:35 PM (GMT -7)   
Caverject will last up to 3-5 weeks in the frig. once it's been opened. It's good for 5 hours at room temp.

How to adjust to needle poking..hmm...perhaps try what I do. My students learn the fine art of giving injections by using an orange, sometimes a sponge. Bob can get over his needle fear once he's become more comfortable...practice may be all he needs. It's not hard but if one isn't used to it, it can be scary. I start all my students out on innocent fruit before they are faced with their first real live injection. Poor fruit... :>(

If you have access to TB (same size as a caverject needle)) syringes, have Bob draw up a small amount of water into the syringe. He would then hold the orange and poke the in the same way he would himself. This I assume would be injecting to the side as if he were positioning for himself. Poking is quick...committ and poke.
Pain with injections is usually caused by going too slowly. I encourage students to just committ and poke. Less stress, no pain. Hesitation is what causes all the stress when we first learn to give shots. By practicing on an orange he'll build confidence.

Most students are ready to go for it after a half dozen or so practice pokes. Doesn't take long....honest! I have them do at least 6 and if I think they're ready, they get to poke each other. After cleansing the site with an alcohol wipe and using sterile needles and sterile saline solution of course :>)

Once Bob has poked he can finish advancing the needle in and draw back a tiny tiny bit to check for blood return...there shouldn't be any. Then, it's a matter of injecting the water (medicine) in over 1-2 seconds, removing the needle and holding gentle pressure. In real life a man should hold a little gentle pressure for up to 5 minutes. The entire injection process takes just a few seconds but to him it seems like forever. Once he's practiced several times he'll feel better about his ability. Hope this is of some help.

Swim

creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 4/11/2007 3:26 AM (GMT -7)   
Hi Kat,

Just a note to say thanks for your update, information, honesty and advice (when needed). I had a similiar scare to yourself in 2004 - biopsy and the works - got the all clear too at as well (and since) - so sincerely glad to read that your personal "scare" had a good outcome. Its a pretty freaky experience. I'm glad it is Spring for you over in your end of the globe. It is actually heading into winter for us here in Australia, but then again, we love the comfort of open fires, walks in the rain, gumboots, and the like. So Spring or Winter, I share your relief and good news of Jeff's continuing recovery, and your good health news too. God bless you both. Lana & CJ
Creed_three
Husband (49 years) diagnosed Dec 2006.  1 (5%) core of 12 positive. Gleeson 4 + 3 = 7. PSA 3.5. Open RP  scheduled 17th April 07.

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