Dr. Weizer??

[Russell's Mom]

me too

Me too. My hands are full right now, (we are starting to head into the Bleo Toxicty-decrease the steroids mode) but am thinking of you and the terrific energy of the group to power through what I call the white water rapids of life. The waves are big, undependable and frequently frightening. We all face the unusuals while we are out of balance ourselves...still people are there for each other in outstanding ways. Quite amazing when you step back and look at the information, territory and support that is happening. But...me too I am thinking of you. Russell's Mom, Sharon

[Savin16]

Just wanted you to know I'm thinking of you and Anthony. What a GREAT mom you are.

[Already Bald]

Since Sheinfeld trained Dr. Cheryl Lee, I bet if you asked, he would make a phone call to him. Doctors reaching out to other doctors really can make a big difference.

Margaret, I think that is a good idea- Dr. Sheinfeld's office may just have the authority needed to get Dr. Lee on the case.
I've been in sales for 20 years, and have many times broken that "first contact" rule to better serve the customer with the more experienced rep. It seems to me it should be the same in medicine.

Tammy, just when you needed car trouble, right?? You and Anthony will get through this thing, just stay focused and take one step at a time.
Thinking about you in Pennsylvania.
Joe

[Margaret]

Tammy,

I wish I was there, I would drive you and Anthony myself . Car problems are such a pain.

I had an idea for you...Since Sheinfeld trained Dr. Cheryl Lee, I bet if you asked, he would make a phone call to him. Doctors reaching out to other doctors really can make a big difference. That is how we got Dr. Sheinfeld to call us in the first place. I would call Dr. Sheinfeld and let him know the hurdles you are facing and I bet he can make some head way for you.

Best of luck with everything and I hope the appt goes well tomorrow.

M.

[mstlyn]

Tammy,

You talked to the very best (my opinion) RPLND surgeon on the planet. You methim through this board, and he is providing you a treatment option that you didn't even know existed (nerve sparing). I am Beaming because that's one of the real values of this board.

A Very special Thank you to the moderators for their service.

Get your boy to the best surgean that you can, and don't accept No as an answer.

I will help in any way at all!

I couldn't agree with you more, Boyce. If not for this forum I'm afraid of what would be going on with Anthony right now. I have really learned a lot through all of you, and have been led to the best doctors in the country. Of course it's hard to take advantage of the best in the country (financially, travel expenses, etc ..) but even so, phone consults and email has been very helpful...

Well I am certainly trying to get the best care that we can. We have run into a few problems here.

I am still waiting to hear from dorrie to see if she can get Anthony an appointment with Dr. Cheryl Lee at U of M (the one sheinfeld trained). Dorrie told me that some places have a policy that once you have seen one doctor, the other doctors as the same facility will not take their patient.

I called U of M and spoke to an oncology nurse to ask her about this and she said that yes, sometimes thats how it is because all of these surgeons work together. She also told me that Dr. Montie does not do surgery any longer.

She suggested that my sons urologist Dr. Bauer, call their doctor communication line and speak to Dr. Cheryl Lee himself about my sons case.

I don't know what that is going to accomplish if she won't see him because of his meeting with Dr. Hafez. Personally I think that is rediculous to tell a patient they are stuck with the first doctor they met, because now the other ones wont see him. This is CANCER not a cold, and some doctors have more expereince than others. Patients should have the choice. Anyway, I may be getting ahead of myself. I'll wait to see if we can get him in to see this other doctor before I spout off too much.

Meanwhile, Dr. Eric Klein (cleveland clinic)wants to see Anthony there at 1 pm tomorrow. Wouldnt you know it, my car is having problems and I can't take it on the road that far. I am trying to get a rental, but the problem is that they open at 8 am, then I need time to go back to U of M to get the CT films I left with Dr. Hafez, and try to make it to cleveland by 1. I'm not sure I can make it.
I called cleveland back to see if they can get him in next week instead, but they told me probably not, and that Dr. Klein is fitting him into a tight schedule because he needs to be seen.

Today will be spent trying to remove barriers...

[boyce]

And THAT is why this board exists

Tammy,

You talked to the very best (my opinion) RPLND surgeon on the planet. You methim through this board, and he is providing you a treatment option that you didn't even know existed (nerve sparing). I am Beaming because that's one of the real values of this board.

A Very special Thank you to the moderators for their service.

Get your boy to the best surgean that you can, and don't accept No as an answer.

I will help in any way at all!

[mstlyn]

Well said, Margaret.

Scott, short, sweet, and to the point

I thought Id send a big hug to you too!

Tammy

[mstlyn]

Well,
I was thinking about starting a poll on this subject- to see how many post RPLND'ers have retrograde..
I do, and I was a Sheinfeld patient- pre-chemo, right template RPLND with no enlarged nodes. Seems like "The Master" would have been able to preserve the nerves, but I have dry ejaculations. Sheinfeld made it very clear that this could be a possibility.

At first I was a little disappointed at being retrograde, hoping that after some time I would get my fluid back, but it has been 10 months and still nothing. I have come to accept that it won't return, although Sheinfeld has told me that he has seen every situation in the past. He tells me that it could still return. It is important for everyone to know that this has not affected my sensation what-so-ever! Sex is still as good as it has ever been. In fact, clean up has never been eaiser!

Tammy, my heart is reaching out to you and Anthony. And the tone of this thread has been disturbing. Please go easy guys, one of our own is in trouble.
Retrograde is not the end of sex, but it can be the end of streility. Tell Anthony to bank sperm and I wish you the very best for a successful RPLND!
PM me if you wish
Joe

Joe, thank you for this. Anthony banked two times before he started chemo. They told him that his count was low ( I think it was 10 mil.) but still enough to work. I guess with it being low it just means it is more chance for failure...
Thank you for caring! Big Hugs to you!

Tammy

[mstlyn]

Have not heard of total loss of function. What I have heard happens is that when you ejac., it disperses into your baldder. You end up urinating it out. No loss of sensation but the fluid goes "backwards" for lack of a better term. There are ways to harvest spem still, even in that case.

However, I have not heard of an RPLND causing a loss of ability to ejaculate, ust that it can be retrograde.

Anyone else heard of total loss?

Robert said that too, and so far I have not heard anyone else say they have heard of it.
I keep wanting to say maybe thats what the doctor meant, but he clearly told me there is a difference in retrograde and the other one where you lose the ability.

[mstlyn]

Tammy:
If you should go to Sloan you can stay with nancy and I. We have lots of room and Sloan is less then an hour away.

Thank you Dadmo, your offer is very generous and appreciated. I doubt that we will be going to Sloan, but I did get a phone call from Dr. Sheinfeld today... (Thank you Margaret)

Dr. Sheinfeld told me that he does nerve sparing surgery on 90% of his post chemo patients. He also told me that 4 or 5 a year is not very much experience, which is the number done by the surgeon we met at U of M.

He also told me that there are at least two other doctors at U of M that have a lot more experience, one of them he personally trained. Her name is Dr. Cheryl Lee. He also recommended Dr. Montie at U of M.

I called Dorrie to see if she could arrange something at U of M and she said she will try, but some places doctors won't take a patient after they have already seen another doctor in the same place. I never heard of that, but she said that is how the doctors run things at the urology place where she works.. Other doctors there will not take other doctors patients. I guess it's to eliminate a competitive (Im better than you) thing.

To me that seems childish since we are talking about very delicate, risky surgery, and some doctors have more experience than others.

I will have to wait and see what she says, or I will call down there myself and see if I can get one of these other doctors to see Anthony.

When Dr. Sheinfeld called I sure felt like I was talking to someone that knows his business and when he asked .. do you want to stay in michigan or go out of state .. I told him, I would love to bring my son to you, but finances won't allow for that. He said he understood and then gave me the info about the other two doctors I named.

Well, I am back to square one, ha ha.

Thank you again, Dadmo and Nancy (Big Hugs)

[Scott]

I guess the passion we all feel can be summed up in that we all care.

Well said, Margaret.

[Margaret]

Well,
I was thinking about starting a poll on this subject- to see how many post RPLND'ers have retrograde..
I do, and I was a Sheinfeld patient- pre-chemo, right template RPLND with no enlarged nodes. Seems like "The Master" would have been able to preserve the nerves, but I have dry ejaculations. Sheinfeld made it very clear that this could be a possibility.

At first I was a little disappointed at being retrograde, hoping that after some time I would get my fluid back, but it has been 10 months and still nothing. I have come to accept that it won't return, although Sheinfeld has told me that he has seen every situation in the past. He tells me that it could still return. It is important for everyone to know that this has not affected my sensation what-so-ever! Sex is still as good as it has ever been. In fact, clean up has never been eaiser!

Tammy, my heart is reaching out to you and Anthony. And the tone of this thread has been disturbing. Please go easy guys, one of our own is in trouble.
Retrograde is not the end of sex, but it can be the end of streility. Tell Anthony to bank sperm and I wish you the very best for a successful RPLND!
PM me if you wish
Joe

Great post Joe...made me smile...I think a poll would be wise because I have had many people PM me to ask about Retro-grade so it must be a topic of interest for many people.

M

[Already Bald]

RetroGrade

Have not heard of total loss of function. What I have heard happens is that when you ejac., it disperses into your baldder. You end up urinating it out. No loss of sensation but the fluid goes "backwards" for lack of a better term. There are ways to harvest spem still, even in that case.

However, I have not heard of an RPLND causing a loss of ability to ejaculate, ust that it can be retrograde.

Anyone else heard of total loss?

Well,
I was thinking about starting a poll on this subject- to see how many post RPLND'ers have retrograde..
I do, and I was a Sheinfeld patient- pre-chemo, right template RPLND with no enlarged nodes. Seems like "The Master" would have been able to preserve the nerves, but I have dry ejaculations. Sheinfeld made it very clear that this could be a possibility.

At first I was a little disappointed at being retrograde, hoping that after some time I would get my fluid back, but it has been 10 months and still nothing. I have come to accept that it won't return, although Sheinfeld has told me that he has seen every situation in the past. He tells me that it could still return. It is important for everyone to know that this has not affected my sensation what-so-ever! Sex is still as good as it has ever been. In fact, clean up has never been eaiser!

Tammy, my heart is reaching out to you and Anthony. And the tone of this thread has been disturbing. Please go easy guys, one of our own is in trouble.
Retrograde is not the end of sex, but it can be the end of streility. Tell Anthony to bank sperm and I wish you the very best for a successful RPLND!
PM me if you wish
Joe

[dadmo]

With all of the other stress the last thing someone should have to worry about is where to stay.

[Margaret]

Tammy:
If you should go to Sloan you can stay with nancy and I. We have lots of room and Sloan is less then an hour away.

You have a BIG heart!