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Archives1
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Latest update. Had my 6 week (actually 7 week) follow up appointment yesterday. PSA was undetectable which was wonderful news! Because my post-op pathology showed a very small positive margin and involvement of one seminal vesicle we will proceed with adjunct radiation treatments as a precaution but doc is very optimistic and still saying 85% chance of total cure. And i have seen tremendous improvement in being dry over the last 10 days or so. Using just one pad a day, some days better than others but I've had a couple of nearly total dry days. Hope that keeps up.
Archives1
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That's great about your PSA
! And it's good you're down to one pad a day. But this is not the time to let up on the progress you have made so far! Keep up the good work! I hope the adjunct radiation can proceed as soon as possible so you can get an even higher chance of a complete cure. We're pulling for you 1000 percent!
! And it's good you're down to one pad a day. But this is not the time to let up on the progress you have made so far! Keep up the good work! I hope the adjunct radiation can proceed as soon as possible so you can get an even higher chance of a complete cure. We're pulling for you 1000 percent!
Archives1
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I’m 4 weeks from catheter removal. I’ve gone through Several types of pads and just can’t find any that feel right and don’t leak.
I’ve also decided that I can’t tell much about progress by guessing or feeling like I’m improving.
I’ve gone to Depends pull ups (once I found the right size)
I wear one at night, and was changing when I though I needed to during the day.
I decided to collect data to see how I’m doing.
I went to changing Depends on a pretty rigorous schedule. I wear one at night, one from 9:00 am to 1:30 pm. One from 1:30 to 6:00 and change again at 11:00 for the night.
I read about a guy using a postal scale
Then I invested $20 in a digital scale. I weighed dry depends and a disposal bag several different time to come up with a dry weight.
I made a chart for each day with all the change times. I weigh the wet Depends in the disposal bag and record the weight
I’m less than a week in, but I’m seeing a pattern developing as to the data.
Over night bus best with least weight added. The 9:00 am to 1:30 pm seems to be the worst - especially if I’m out of the house moving around. 1:30 to 6:00 pm is second worst. 6:00 to 11:00 is second best. Probably because I’m sitting reading or watching TV
I weigh in grams, and grams is close enough that 1 gram is about 1 ml of urine.
I believe after several weeks, I’ll be able to see some consistent patterns and also see if I’m making progress.
I’m a detail and analytical guy, so this data helps me.
I hope to be able to quantify progress. I shall keep you posted
I’ve also decided that I can’t tell much about progress by guessing or feeling like I’m improving.
I’ve gone to Depends pull ups (once I found the right size)
I wear one at night, and was changing when I though I needed to during the day.
I decided to collect data to see how I’m doing.
I went to changing Depends on a pretty rigorous schedule. I wear one at night, one from 9:00 am to 1:30 pm. One from 1:30 to 6:00 and change again at 11:00 for the night.
I read about a guy using a postal scale
Then I invested $20 in a digital scale. I weighed dry depends and a disposal bag several different time to come up with a dry weight.
I made a chart for each day with all the change times. I weigh the wet Depends in the disposal bag and record the weight
I’m less than a week in, but I’m seeing a pattern developing as to the data.
Over night bus best with least weight added. The 9:00 am to 1:30 pm seems to be the worst - especially if I’m out of the house moving around. 1:30 to 6:00 pm is second worst. 6:00 to 11:00 is second best. Probably because I’m sitting reading or watching TV
I weigh in grams, and grams is close enough that 1 gram is about 1 ml of urine.
I believe after several weeks, I’ll be able to see some consistent patterns and also see if I’m making progress.
I’m a detail and analytical guy, so this data helps me.
I hope to be able to quantify progress. I shall keep you posted
Archives1
Staff member
Hi @digouro, That's an interesting way you've developed of finding out if you're improving or not. I've never seen or heard of this particular method and you are definitely on the ball to come up with it! And as you get more days and weeks into this you will soon begin to detect definite patterns in what's going on and that would help you overall. Very smart of you to do this!
I've never seen or heard of this particular method and you are definitely on the ball to come up with it! And as you get more days and weeks into this you will soon begin to detect definite patterns in what's going on and that would help you overall. Very smart of you to do this!
Archives1
Staff member
Update. I am still using about one pad a day, sometimes two and have a mostly dry day now and then so feeling pretty good about that a little over two months post surgery. I was referred for adjunct radiation therapy because of some seminal vesicle involvement and met with the oncologist/radiation doc yesterday. I will so a simulation on the 20th and if that goes well and my continence is the same or better I will start RT around the first of November for about 7 weeks. He also thinks short term hormonal therapy should also be done along with the RT - two or three shots. I did not expect that and told him if my urologist approved it was OK with me as he said that doing both therapies meant around a 10% improvement for a positive outcome. He seems to think the side effects will not be bad though of course that varies for everyone. I do have to drive about 70 minutes one way fir all this so I'm hoping the worst of it will be the drive!
Archives1
Staff member
Hi ShellKnobCAt, If doing both therapies will give a 10 percent boost for a positive outcome then go for it! I know this, along with hormonal therapy, is the "one more thing to worry about," but we are all pulling for you and sending good thoughts your way!
And I hope the driving will be the worst of it, too. If you're driving near where I live in central Florida, then the drive WILL be the worst of it for sure! There are plenty of crazy drivers down this way. Maybe someone can give you a gift card for gas or even better, maybe someone can drive you to your appointments if that would be possible. That way you'd at least have some company!
Glad you're feeling a bit better. Are you still walking every day? Now that it's a little cooler (at least for now) where I am, walking is now a pleasure!
And I hope the driving will be the worst of it, too. If you're driving near where I live in central Florida, then the drive WILL be the worst of it for sure! There are plenty of crazy drivers down this way. Maybe someone can give you a gift card for gas or even better, maybe someone can drive you to your appointments if that would be possible. That way you'd at least have some company!
Glad you're feeling a bit better. Are you still walking every day? Now that it's a little cooler (at least for now) where I am, walking is now a pleasure!
Archives1
Staff member
Been a while since I have posted. I am happy to report that I have made more progress and am only using one pad a day with some days being almost nearly dry. I had my radiation simulation today and I will begin external beam radiation therapy on October 29th. I will have a treatment every day M-F for a total of 38 treatments ending December 22nd if the only day I miss is Thanksgiving day. I am also supposed to be having hormone therapy at the same time but apparently the drug used for that, Leuprolide, is in short supply nationwide so I may have to wait for that. I am hoping that these therapies do not slow down or reverse my journey to dryness but I do know that increased incontinence is a side effect of them. But the goal is to beat the cancer and that's what I'm focusing on!
Archives1
Staff member
Time for an update! I'm just over halfway through my radiation treatments. 20 done with 18 to go. The only side effect has been a slight reversal in incontinence. I had been almost totally dry but over the last week I'm dripping a bit when I stand up but it's not bad at with using only one pad a day and it's usually dry or almost so. I am experiencing fatigue too but it's not bad. I was supposed to be doing hormone treatments at the same time but the drug is in nationwide shirt supply so that hasn't started yet.
So far, so good!
So far, so good!
Archives1
Staff member
Hi @ShellKnobCat it's good to hear you're just over halfway through radiation and it doesn't seem you're experiencing too much in the way of side effects. I hope the hormone treatment drug can be Replenished soon and that treatment can get started. So just stay the course. It sounds like you're on the right track!!
Archives1
Staff member
Update- finished the radiation therapy last Wednesday. The fatigue got worse toward the end but wasn't terrible. The hormone therapy never happened and I'll ask my urologist on Wednesday at my followup appointment. They will run a PSA so fingers crossed for another non-detectable.
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