› Forums › General Melanoma Community › Stage III in vegas – best place for treatment?
- This topic has 8 replies, 4 voices, and was last updated 13 years, 11 months ago by
Blueyes.
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- December 30, 2010 at 12:40 am
I'm posting for a family member that is Stage III and soon will undergo ELND (after the sentinel showed a microscopic amount in one). Hopefully the ELND will not show any more spread but if it does, I wanna help her make sure she is getting the best treatment she can. It doesn't look like NV has a NCI center. If it did, maybe that would be a good place to go. How does she make sure her onc is going to fight her life in every possible way? How do we make sure he's aware/active/literate of the phast III trials going on and will refer her if appropriate?
I'm posting for a family member that is Stage III and soon will undergo ELND (after the sentinel showed a microscopic amount in one). Hopefully the ELND will not show any more spread but if it does, I wanna help her make sure she is getting the best treatment she can. It doesn't look like NV has a NCI center. If it did, maybe that would be a good place to go. How does she make sure her onc is going to fight her life in every possible way? How do we make sure he's aware/active/literate of the phast III trials going on and will refer her if appropriate?
Immediately is there anything she should ask the onc-surgeon regarding the ELND. Are multiple ways this can be done, are there speical scans that can be done during the surgery to make sure they are taking what they need. It seems like I read it really does matter how good the onc surgeon is performing the ELND. How can she make sure she's in good hands?
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- December 30, 2010 at 1:15 am
Is she being seen at the new cancer center. Wolfram Zamlowski is a melanoma specialist. He used to be in Salt Lake at our NCI designated center here but moved to Vegas when they opened the new center there. He was very highly regarded here.
Best wishes,
Janner
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- December 30, 2010 at 1:15 am
Is she being seen at the new cancer center. Wolfram Zamlowski is a melanoma specialist. He used to be in Salt Lake at our NCI designated center here but moved to Vegas when they opened the new center there. He was very highly regarded here.
Best wishes,
Janner
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- December 31, 2010 at 2:05 am
she should ask about the consequences of the LND, most specifically Lymphadema, and things that she can do to reduce the possibilites of lymphadema, and how to treat it.
I've known people who've gone in for LND and not even known that they were going to have drains in place when they got done, so she should find out as much as she can about the surgery itself, and the after care.
I don't know if there's an data on it, but from my years here, just from knowing many people who've had LNDs ( I have not) it seems to me that those who do the best afterwards, are those who keep their drains in the longest. People who try to rush that stage of recovery seem to have more difficulties. But even those who follow all the rules can end up with sever lymphdema, so she should discuss that with her docs.
Even if her nodes are negative, there might be no treatment offered, or, more likely, she'll be offered Interferon. It will be her responsibility to ask about possible trials, and maybe to look into them all herself.
Send her this direction, there are folks here who can help her learn how to use the clinical trials searches. Or she can contact the American Cancer Society, and they have researchers who will interview her on the phone and help her learn what trials she might be eligible for. A lot will depend on the LND results, and final staging.
Good luck.
dian in spokane
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- December 31, 2010 at 5:53 am
Thank you both. I will pass on the info.
I already had/have a feeling she needs to suddenly become her own biggest advocate. This seems true of the entire health care system. I've worked on the research side of clinical trials so I know there can be some really dedicated passionate docs involved. I hope she can find her way to them. I will gently help her as much as she wants.
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- January 6, 2011 at 4:34 am
I second Janner's comment! Dr. Wolfram Samlowski at NCI. I traveled from Northern Utah to be treated by him and will do it again if need be! You won't find another Melanoma cowboy willing to work as hard as he will to save a life (in Nevada). I can't sing his praises loud enough!! Prior to going to NCI, Dr. Samlowski was hw=ead of the Melanoma program at Huntsman Cancer Institute in Utah. My Dr's in Utah wouldn't consider sending me to anyone other than Dr. Sam. SO worth checking…his nurse is Allison and would be more thann accomadating.
Best of luck,
Blueyes
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- January 6, 2011 at 4:34 am
I second Janner's comment! Dr. Wolfram Samlowski at NCI. I traveled from Northern Utah to be treated by him and will do it again if need be! You won't find another Melanoma cowboy willing to work as hard as he will to save a life (in Nevada). I can't sing his praises loud enough!! Prior to going to NCI, Dr. Samlowski was hw=ead of the Melanoma program at Huntsman Cancer Institute in Utah. My Dr's in Utah wouldn't consider sending me to anyone other than Dr. Sam. SO worth checking…his nurse is Allison and would be more thann accomadating.
Best of luck,
Blueyes
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- December 31, 2010 at 5:53 am
Thank you both. I will pass on the info.
I already had/have a feeling she needs to suddenly become her own biggest advocate. This seems true of the entire health care system. I've worked on the research side of clinical trials so I know there can be some really dedicated passionate docs involved. I hope she can find her way to them. I will gently help her as much as she wants.
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- December 31, 2010 at 2:05 am
she should ask about the consequences of the LND, most specifically Lymphadema, and things that she can do to reduce the possibilites of lymphadema, and how to treat it.
I've known people who've gone in for LND and not even known that they were going to have drains in place when they got done, so she should find out as much as she can about the surgery itself, and the after care.
I don't know if there's an data on it, but from my years here, just from knowing many people who've had LNDs ( I have not) it seems to me that those who do the best afterwards, are those who keep their drains in the longest. People who try to rush that stage of recovery seem to have more difficulties. But even those who follow all the rules can end up with sever lymphdema, so she should discuss that with her docs.
Even if her nodes are negative, there might be no treatment offered, or, more likely, she'll be offered Interferon. It will be her responsibility to ask about possible trials, and maybe to look into them all herself.
Send her this direction, there are folks here who can help her learn how to use the clinical trials searches. Or she can contact the American Cancer Society, and they have researchers who will interview her on the phone and help her learn what trials she might be eligible for. A lot will depend on the LND results, and final staging.
Good luck.
dian in spokane
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