Jeff & becky update & some question for those using vacuum devices

Hey everyone, haven't been on in a while. I've been trying to catch up on things I got behind on while dealing with my dad's illness. I'm not quite there yet - I didn't realise how much this was going to affect me - I guess I'm fortunate that this is the first time I've lost a close loved one. My sister and I will be going out to CA again to help my brother with some more of my dad's legal stuff, but this time we're taking her 3 & 4 year old sons, and taking a trip to Disneyland - so there will be some fun.

Jeff's second PSA cme back at <0.01 %, so even though cancer showed in the margin so far it looks like the dr. still got it all.

Around St. Patrick's day we purchased 2 different pumps a vacurect, and an osbon. We figured we would return whichever one we didn't want, although it's probably too late to do that. They both did okay, althoug I think the osbon worked better. The bands on the vacurect were hard to remove. The bands on the osbon were more easily removed, but snapped more when he put them on.

We've only been able to have sex once, and it wasn't great. He had to use 2 rings to keep the erection, and the rings made it so painful it wasn't very enjoyable. (This was partially from hair being pulled). So he kept practicing with them, for therapy, and it has seemed to improve his flacid length & thickness.

The problem is that now Jeff is having a lot of pain with orgasms, which he hadn't had since the first month after surgery (in October). He feels like someone slugged him in the testicle, right at the point of climax, and lingering for about a minute. He also had his first episode of leaking since the first of January. He said when he uses the pump he can feel the urine being pulled down his penis.

So he hasn't put a band on for about 3 weeks, and hasn't even used the pump for about 2. He was out of the country for a week, so tonight was the first orgasm he'd had for about a week and half to 2 weeks. I was hoping that the pain would be gone, but it was still there, and he leaked again.

I'm worried that he's aggravated something, or even injured himself with the pump. It's really made any attempt at intimacy an unpleasant experience - so we've really cooled it, which isn't good for either of us emotionally. It's been 6 months since the surgery, and I can see him getting depressed and frustrated.

Any advice? We're thinking he may need to see the dr. - but I"m not even sure there's anything he could do.

On a good note, our son who is a marine is still waiting for his special class to start, so they've let him come home for a month to work with our local recruiter. It's so good to have all my boys at home where I can keep track of them all.

I'm praying for you all -

bec

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husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%

bec,

When we were using the Vacurect while we were able to have sex it just was not good for either one of us. I found that the rings and probably the vacuum eventually made me sore and when you have that constant discomfort with the rings it is just impossible to get into the moment like it was before surgery. It was then that I made up my mind to try the injections. My urologist had suggested it from day one because his patients had reported that it was more normal then the vacuum pump. My first experience with injections was not good as the first medication, Caverjet, gave me an aching penile pain. I continued to have some aching for three weeks afterwards so I was not motivated to try it again for a while. My urologist's PA subsequently prescribed Bimix which is a compound of two medications and does not have the Caverjet in it. I started using the Bimix a couple of weeks ago and it provided a very good and firm erection and the sex has been great. No discomfort, no fooling around with pumps and an erection that lasts for a good hour so no reason to hurry the intimacy. It is as close to being normal as you can get until normal erections come back. As young as Jeff and you are injections should be considered. Of course the reluctance is the thought of pain with the needle going into the penis. The needle used is an insulin type of needle and is very small. It is like a pin prick. To me it is less pain then dealing with the rings. I am not sure why the orgasms are causing Jeff pain this long after surgery. I have never had pain with my orgasms.

Tamu

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Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3

Bec - we second Tamu on the advice with the injections. Although Bob was terrified to poke himself with the needle, once he overcame this obstacle, we find the injections to be very helpful and exactly as Tamu describes. Bob is able to use the Trimix without any discomfort at all.

A visit to your doctor is definitely in order, just to find out what's going on. Ask him about the injections too. Makes intimacy way more "normal".
;o) Linda & Bob

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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

Hi Friends

I have been having some of the same problems that you are going through.  I am 90 days past surgery and had a doctors appointment on Tuesday.  He strongly advocates injections.  I have decided to wait a while because of my own fears of the needle and penis issue.  He did change me from Viagra to Cialis because of my problems with extreme flushing, headaches, and congestion. I use a pump that is similar in design to the Osbon.  It does give me a pretty good erection, but it is not comfortable or spontaneous. I suppose that sometime soon I will need to try the injections.

The good news on Tuesday was my PSA results.  Under normal circumstances, my urologist will not test before 90 days.This was my first test since surgery.  My results came back less than 00.01%.  Undectectable.... VIEW IMAGE

Looking to the future. 

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lifeguyd,

Excellent PSA!! It must have been a big relief since it was the first one since your surgery. I understand your reluctance to try the injections. I had the same reaction but finally just got fed up with the pump and nothing from the Viagra. As my urologist told me, all of his motivated patients eventually move to injections.

Tamu

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Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3

Thank you all for your input. I will encourage Jeff to make an appt. We still have one priscription left for a high dosage of muse left that maybe we'll try one more time. (OUr dr. is pretty coservative and had initially diagnose 150 mg. Now it's 1000.)

If that doesn't work, hopefully Jeff won't get too freaked out by the needle!

Lifeguyd, congrats on the PSA!

bec

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husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%

Lifeguy - congrats on the PSA result! that's great news.

Bec - Jeff has been using the pump on and off for a few months now. sometimes the erection is worthy of intercourse. other times it's not. he's not ready to use the injections yet but I will pass on Tamu's and Bob's experience to him. We've reached a couple of stalemates where we won't even fool around because it just doesn't seem as much fun....and then other times we go with the flow and enjoy ourselves. Jeff hasn't had pain per say, but sometimes his orgasms are very intense and he'll just suddenly move away and say he has to stop. I think your Jeff should talk with his doctor about his pain. it could be nothing, or it could be something that needs looking into. How has your experience been with the muse? I assume not so good if you're considering injections. what a journey this is......take care, kat

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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