Issues with ProACT incontinence value

Posted by jeff Marchi @jeffmarc, Jul 7 10:39am

For those that are not familiar with ProACT. It is used to aid in reducing incontinence and works quite well. It is something like the artificial urinary sphincter. (AUS) but doesn’t require you to push a button to pee.

Last week I attended a presentation by a urologist who specializes in incontinence. He discussed a lot of different issues, of course, but his experience with products that didn’t work, as well as expected, was very informative.

I know that the urologist I have gone to has said that, even though I’ve had radiation, she would consider using the sling. She was not using. ProACT yet but they were planning on starting to use it.

The Doctor who was doing the presentation had started using ProACT when it first came out. He used it on a lot of patients that would’ve gotten an AUS because he thought it would work just as well, but be easier on the patient. As for the slang, he confirmed that it frequently doesn’t work well for patients who had radiation.

Unfortunately, he found out that the way the ProACT worked was not compatible with people who had radiation. ProACT works by placing two balloons near where your prostate was and they squeeze on the urethra to stop it from leaking. When someone has radiation, it makes the urethra stiffer and as a result ProACT doesn’t work well.

It seems that the only solution to a serious problem of incontinence is the AUS. New models seem to be much smaller.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for jeff Marchi @jeffmarc

ATM is the genetic disorder. I have BRCA2 another genetic disorder.

This comment “ Only active in androgen receptor mutant patients with LBD mutation. You have ATM mutation only” is referring to the fact that you don’t have an LBD mutation, you only have an ATM mutation so the first part of the sentence doesn’t apply to you.

You are correct though. An ATM mutation increases the risk of developing prostate cancer, particularly more aggressive and lethal forms, and is associated with earlier onset of the disease. You should spend some time searching the web for information on ATM so that you are informed.

I do not understand why your doctor is giving you one month Lupron shots. I had six month shots for six years, I know a lot of people that get three month shots. I don’t know anybody that gets one month shots regularly, If you aren’t in Canada, this would be a real profit making adventure for your doctor. I can think of no logical reason you could not get at least a three month shot. You should ask your doctor about this, why you’re getting one month shots when you don’t need to come back every month.

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As promised “ after shopping “ I want to quickly answer your query about the monthly shot choice. If I have this correct: 1 month 7.5mg 3 month 11.25 6 month 45 mg
Now know this: my Dad was getting 6 month shots back in the early 2000’s He walked out of the house after breakfast and walked back in after his 6 month shot a VERY DIFFERENT MAN! He walked in straight to his LazyBoy and fell asleep He would get up around noon for lunch then immediately go back to “ his chair “ which soon became the type that tilted and lifted him so he could easily get out of the chair. But as soon as he hit the chair his eyes would close until break time. His friends would stop by but he didn’t feel like socializing. That would last for months. His PSA obviously dropped and his whole family thought that all of the sleeping was a small price to pay. But it turned out not to be only sleeping. Although he got occasional hot flashes most of the time he was cold and walked around with a blanket around his shoulders. His posture changed radically: slumped over and needed a walker for every move. Dad was a expow B17 pilot shoulder like the hulk. He told us it was from flying the B17 that it took lots of strength to man the stick. After years of working out every time they were on a mission even in his 80’s his shoulder felt like the hulk. But after years on Lupron his whole body softened and a man who couldn’t sit still always needing to be busy. Older than all of his friends and neighbors he would see something that needed fixing he would just fix things change the oil on our cars and one of his friends cars. But as he took Lupron he didn’t want to do anything. I would give him pep talks and offer to do things with him. I got a chill when he started saying with a weird smile and corny Voice: “ IM LAZY”! This from a man who HATED LAZY PEOPLE!
Around 2012 he chose to stop the Lupron. 2 years later he was dead. He would say: I survived the nazis, worked hard raised a great family, and stayed married to my childhood sweetheart for 75 years! I’m not afraid to die. We were told that the Lupron sucked all of the calcium from his bones.
When I was told that I should “ at least start Lupron and told the doc about Dad the Doc suggested that I try the one month size Lupron. I agreed and noticed that my symptoms was not like my Dad and when I complained about tiredness and APATHY, I requested Modafinil which not only eliminated the tiredness and the APATHY My behavior was noticed by everyone in the oncology clinic and my doctor was somewhat happy for me but lamented that I’m older than him and I act like I’m 40.
So at the end of the proverbial day this non-doctor thinks that my body tolerates the 7.5 mg much better than it might process 45mg dose all at once.
In fact yesterday was my best day ever going 6.5 hours without a need to pee.
There was one similar side effect that my Dad had which was chills for hours after my monthly shot. The nurse said the biggest complaint by most patients is hot flashes. And although I get them from time to time it’s chills that I struggle with. My walking distance has doubled to 6 miles and I’m going to join the gym.
Am I wrong about my body processing the 7.5 vs 45 mg?
I have a few more questions for you but it’s time for breakfast.
PS I slept the whole night without a need to get up.

REPLY
Profile picture for olman @olman

As promised “ after shopping “ I want to quickly answer your query about the monthly shot choice. If I have this correct: 1 month 7.5mg 3 month 11.25 6 month 45 mg
Now know this: my Dad was getting 6 month shots back in the early 2000’s He walked out of the house after breakfast and walked back in after his 6 month shot a VERY DIFFERENT MAN! He walked in straight to his LazyBoy and fell asleep He would get up around noon for lunch then immediately go back to “ his chair “ which soon became the type that tilted and lifted him so he could easily get out of the chair. But as soon as he hit the chair his eyes would close until break time. His friends would stop by but he didn’t feel like socializing. That would last for months. His PSA obviously dropped and his whole family thought that all of the sleeping was a small price to pay. But it turned out not to be only sleeping. Although he got occasional hot flashes most of the time he was cold and walked around with a blanket around his shoulders. His posture changed radically: slumped over and needed a walker for every move. Dad was a expow B17 pilot shoulder like the hulk. He told us it was from flying the B17 that it took lots of strength to man the stick. After years of working out every time they were on a mission even in his 80’s his shoulder felt like the hulk. But after years on Lupron his whole body softened and a man who couldn’t sit still always needing to be busy. Older than all of his friends and neighbors he would see something that needed fixing he would just fix things change the oil on our cars and one of his friends cars. But as he took Lupron he didn’t want to do anything. I would give him pep talks and offer to do things with him. I got a chill when he started saying with a weird smile and corny Voice: “ IM LAZY”! This from a man who HATED LAZY PEOPLE!
Around 2012 he chose to stop the Lupron. 2 years later he was dead. He would say: I survived the nazis, worked hard raised a great family, and stayed married to my childhood sweetheart for 75 years! I’m not afraid to die. We were told that the Lupron sucked all of the calcium from his bones.
When I was told that I should “ at least start Lupron and told the doc about Dad the Doc suggested that I try the one month size Lupron. I agreed and noticed that my symptoms was not like my Dad and when I complained about tiredness and APATHY, I requested Modafinil which not only eliminated the tiredness and the APATHY My behavior was noticed by everyone in the oncology clinic and my doctor was somewhat happy for me but lamented that I’m older than him and I act like I’m 40.
So at the end of the proverbial day this non-doctor thinks that my body tolerates the 7.5 mg much better than it might process 45mg dose all at once.
In fact yesterday was my best day ever going 6.5 hours without a need to pee.
There was one similar side effect that my Dad had which was chills for hours after my monthly shot. The nurse said the biggest complaint by most patients is hot flashes. And although I get them from time to time it’s chills that I struggle with. My walking distance has doubled to 6 miles and I’m going to join the gym.
Am I wrong about my body processing the 7.5 vs 45 mg?
I have a few more questions for you but it’s time for breakfast.
PS I slept the whole night without a need to get up.

Jump to this post

My father also had Lupron shots. I remember the day he told me Lupron stopped working. I did not really fully understand it since I had no prostate cancer knowledge at that time. He died a couple years later in a lot of pain from prostate cancer, at 88.

I never noticed him having any negative effects from Lupron.

As I mentioned, I had six months shots for six years, Never had any issues. I stopped it when I was 75 and switched to orgovyx. I switched only because it was $1600 cheaper a year to be on Orgovyx.

Is it possible your father’s negative reaction to Lupron was related to some other medical issue he was experiencing from the cancer.

I have attended advanced prostate cancer meetings weekly for four or five years. I never heard anybody complain about anything close to what you are saying happened to your father.

REPLY

Oncologist called to tell me my PSA was down to.2 or .02
I told him I’m still waking up with erections but have been worried about taking him out for a test drive. He ENCOURAGED it wanting a full report

REPLY
Profile picture for jeff Marchi @jeffmarc

My father also had Lupron shots. I remember the day he told me Lupron stopped working. I did not really fully understand it since I had no prostate cancer knowledge at that time. He died a couple years later in a lot of pain from prostate cancer, at 88.

I never noticed him having any negative effects from Lupron.

As I mentioned, I had six months shots for six years, Never had any issues. I stopped it when I was 75 and switched to orgovyx. I switched only because it was $1600 cheaper a year to be on Orgovyx.

Is it possible your father’s negative reaction to Lupron was related to some other medical issue he was experiencing from the cancer.

I have attended advanced prostate cancer meetings weekly for four or five years. I never heard anybody complain about anything close to what you are saying happened to your father.

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As a vet I have no idea with the cost of meds. I’ve heard of meds being close to a million dollars. If I need then the VA gives them to me.
About my Dads reaction to Lupron [ I’m not a doctor, however I think it was the 6 month dose in one shot. This is why I opted for the one month shot. My experience was some of Dads side effects for two days from my first shot give in the fatty part of my arm. There was a hard lump in the shot of injection. The second shot was in my belly and I had virtually no side effects and I tarted feeling peppy . My third shot I felt like I was being treated with pep meds. My sleep got better. The frequency of urination went from every 2 hours to twice a night. My daily ruinations trip was up to 4 mourns. Now I’m up to 6 to 6.5 hours and the strength of my urine was splashing on the top of the bowl and no stopping and starting. My exercise routine went from a 4 mile walk to 4 miles twice a day and occasional jog.
But I see muscle shrinkage in my arm and legs. But worst of all I have uncomfortable chest discomfort and never before edema in my feet and lower legs which someone said is an indication of congestive heart failure
This non doctor changes my meds according to what works. So after reading the pedesterone 1 a day, I changed to one a week after the article that once a week results in building muscles which once a day breaks muscles down. I feel better with the once pill a week
I’m makes more changes and have a few ideas that I’ll talk about at a later date

REPLY
Profile picture for olman @olman

Oncologist called to tell me my PSA was down to.2 or .02
I told him I’m still waking up with erections but have been worried about taking him out for a test drive. He ENCOURAGED it wanting a full report

Jump to this post

Do it!!

REPLY
Profile picture for olman @olman

As a vet I have no idea with the cost of meds. I’ve heard of meds being close to a million dollars. If I need then the VA gives them to me.
About my Dads reaction to Lupron [ I’m not a doctor, however I think it was the 6 month dose in one shot. This is why I opted for the one month shot. My experience was some of Dads side effects for two days from my first shot give in the fatty part of my arm. There was a hard lump in the shot of injection. The second shot was in my belly and I had virtually no side effects and I tarted feeling peppy . My third shot I felt like I was being treated with pep meds. My sleep got better. The frequency of urination went from every 2 hours to twice a night. My daily ruinations trip was up to 4 mourns. Now I’m up to 6 to 6.5 hours and the strength of my urine was splashing on the top of the bowl and no stopping and starting. My exercise routine went from a 4 mile walk to 4 miles twice a day and occasional jog.
But I see muscle shrinkage in my arm and legs. But worst of all I have uncomfortable chest discomfort and never before edema in my feet and lower legs which someone said is an indication of congestive heart failure
This non doctor changes my meds according to what works. So after reading the pedesterone 1 a day, I changed to one a week after the article that once a week results in building muscles which once a day breaks muscles down. I feel better with the once pill a week
I’m makes more changes and have a few ideas that I’ll talk about at a later date

Jump to this post

I’ve never heard of giving a Lupron shot in the arm or the belly. They do it with the Eligard shot, not Lupron itself. I always got it in the hip/thigh, No side effects at all from the shot and I had a six month shot for six years. I know many people prefer the three month shot. Taking Orgovyx once a day is preferable, when you stop your testosterone comes back much quicker.

I’m not sure what you were saying about prednisone, You seem to have spelled it wrong, but I’m not sure that’s the pill you’re talking about.

If you are taking prednisone because you are on Zytiga Your system is not going to like that over the long-term. Zytiga Prevents your body from Producing cortisol, Which is necessary to regulate sleep. Prednisone offsets that and gives you back the cortisol that is missing.

Yes, your muscles will break down from Lupron. I found that I could not get off the floor because my muscles were so deteriorated from it. I started going to the gym three days a week, most of the time, and that has made a major difference in building back my muscles and my ability to up get off the floor.

You definitely don’t need prednisone to build muscles. You can do that by doing weight exercises, even if you are on ADT. I am 77 years old and I’ve been able to do it even though I’ve been on ADT for nine years.

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