› Forums › General Melanoma Community › Memorial Sloan Kettering????’s
- This topic has 30 replies, 7 voices, and was last updated 12 years, 6 months ago by
NYKaren.
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- November 11, 2011 at 9:41 pm
Hi Everyone,
Hi Everyone,
It has been one heck of a year for my husband and I…..Nov 2010 found out he had Melanoma…..July 2011 (3) Local recurrances on calf AFTER hip surgery!!! September 2011 ANOTHER WLE and Complete Lymph Node dissection in groin out of 19 nodes 2 macro 1 micro positive. We will be going to Sloan on the 18th for a second opinion and just would like to hear abour your experiences with them. We are coming from the Adirondacks which is a 5 hr drive so it should be interesting. NO EXPERIENCE with the city whatsoever so if you have any "pointers" please let us know. Just would like to hear what all of you have to say.
Thanks for all of your knowledge!!!!
Jewel
- Replies
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- November 11, 2011 at 9:54 pm
I have had a wonderful experience with Sloan. I have been going there since June 2010. Although I have seen a number of other oncologists at a variety of centers (both in NYC and beyond) Sloan has remained my primary oncologist. While it is possible that experiences vary from oncologist to oncologist at Sloan (I have Dr Wolchok who I find wonderful on every level from expertise to sensitivity) there are a number of institutional reasons I feel very comfortable there:
– friendliness of staff
– patient portal (I find this really useful for tracking appointments, getting bloodwork results, and paying bills)
– experience with a very broad range of therapies – including those they do not directly administer (I was referred elsewhere for IL-2 as Sloan don't offer it, but my oncologist was absolutely familiar with it)
– responsiveness of staff (whenever I have had complications or issues they have been incredibly helpful)
I cannot speak to the surgical expertise as I have used NYU for surgery as I have a long history with my surgeon there. I'm sure plenty of others have experience with the Sloan surgical team as well and can chime in.
I wish you all the best with your visit. I am sure you will find the staff wonderful.
J
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- November 11, 2011 at 9:54 pm
I have had a wonderful experience with Sloan. I have been going there since June 2010. Although I have seen a number of other oncologists at a variety of centers (both in NYC and beyond) Sloan has remained my primary oncologist. While it is possible that experiences vary from oncologist to oncologist at Sloan (I have Dr Wolchok who I find wonderful on every level from expertise to sensitivity) there are a number of institutional reasons I feel very comfortable there:
– friendliness of staff
– patient portal (I find this really useful for tracking appointments, getting bloodwork results, and paying bills)
– experience with a very broad range of therapies – including those they do not directly administer (I was referred elsewhere for IL-2 as Sloan don't offer it, but my oncologist was absolutely familiar with it)
– responsiveness of staff (whenever I have had complications or issues they have been incredibly helpful)
I cannot speak to the surgical expertise as I have used NYU for surgery as I have a long history with my surgeon there. I'm sure plenty of others have experience with the Sloan surgical team as well and can chime in.
I wish you all the best with your visit. I am sure you will find the staff wonderful.
J
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- November 11, 2011 at 10:14 pm
Hi Jewel –
I am a patient at Sloan. Was actually just there today for my 3 month scans. They are wonderful there. I started adventure with Melanoma at UNC Chapel Hill and then continued at sloan when I was moved to NJ. Been going there for almost a year now.
As far as the city goes – I live in Jersey City and take the train in. Driving in the City can be interesting 🙂 If you need help with anything let me know.
I did have a VAT's procedure done there. Surgery was pretty smooth and they really take good care of you (although I found UNC also took really good care of me).
Best of luck!
Erin
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- November 11, 2011 at 10:22 pm
Hi Erin,
You were kind of enough to answer one of my post before…if my memory serves me correctly you "used to have lung mets" and now they are gone (wonderful) I have to laugh (alot) because my husband and I have (VERY Little) experience with the city. Our appointment is at 9:30 and we are coming from Harriman….stress level should be at an ALL time high BEFORE we even get there!!!
Jewel
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- November 11, 2011 at 10:22 pm
Hi Erin,
You were kind of enough to answer one of my post before…if my memory serves me correctly you "used to have lung mets" and now they are gone (wonderful) I have to laugh (alot) because my husband and I have (VERY Little) experience with the city. Our appointment is at 9:30 and we are coming from Harriman….stress level should be at an ALL time high BEFORE we even get there!!!
Jewel
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- November 11, 2011 at 11:12 pm
ha oh yes! Sorry – totally forgot! 🙂 and let's hope they are still gone! Just had my 3 month scans today and then back there on Tuesday afternoon to get the results!
Are you guys driving in for the appointment? I know there is a parking garage right next door to the outpatient center. There will be lots of traffic… which again is why I take the train in 🙂 I'm sure you'll do just fine!
Erin
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- November 11, 2011 at 11:12 pm
ha oh yes! Sorry – totally forgot! 🙂 and let's hope they are still gone! Just had my 3 month scans today and then back there on Tuesday afternoon to get the results!
Are you guys driving in for the appointment? I know there is a parking garage right next door to the outpatient center. There will be lots of traffic… which again is why I take the train in 🙂 I'm sure you'll do just fine!
Erin
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- November 11, 2011 at 11:12 pm
ha oh yes! Sorry – totally forgot! 🙂 and let's hope they are still gone! Just had my 3 month scans today and then back there on Tuesday afternoon to get the results!
Are you guys driving in for the appointment? I know there is a parking garage right next door to the outpatient center. There will be lots of traffic… which again is why I take the train in 🙂 I'm sure you'll do just fine!
Erin
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- November 11, 2011 at 10:22 pm
Hi Erin,
You were kind of enough to answer one of my post before…if my memory serves me correctly you "used to have lung mets" and now they are gone (wonderful) I have to laugh (alot) because my husband and I have (VERY Little) experience with the city. Our appointment is at 9:30 and we are coming from Harriman….stress level should be at an ALL time high BEFORE we even get there!!!
Jewel
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- November 11, 2011 at 10:14 pm
Hi Jewel –
I am a patient at Sloan. Was actually just there today for my 3 month scans. They are wonderful there. I started adventure with Melanoma at UNC Chapel Hill and then continued at sloan when I was moved to NJ. Been going there for almost a year now.
As far as the city goes – I live in Jersey City and take the train in. Driving in the City can be interesting 🙂 If you need help with anything let me know.
I did have a VAT's procedure done there. Surgery was pretty smooth and they really take good care of you (although I found UNC also took really good care of me).
Best of luck!
Erin
-
- November 11, 2011 at 10:14 pm
Hi Jewel –
I am a patient at Sloan. Was actually just there today for my 3 month scans. They are wonderful there. I started adventure with Melanoma at UNC Chapel Hill and then continued at sloan when I was moved to NJ. Been going there for almost a year now.
As far as the city goes – I live in Jersey City and take the train in. Driving in the City can be interesting 🙂 If you need help with anything let me know.
I did have a VAT's procedure done there. Surgery was pretty smooth and they really take good care of you (although I found UNC also took really good care of me).
Best of luck!
Erin
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- November 11, 2011 at 10:14 pm
Hi J,
Thank you so much for your reply…. I did look at your profile and I see that you have been to a few different hospitals. Are you with Sloan now and what course did they decide to do with your care???? Or better yet….what decision did you decide to take in your care???
Thank You,
Jewel
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- November 11, 2011 at 10:14 pm
Hi J,
Thank you so much for your reply…. I did look at your profile and I see that you have been to a few different hospitals. Are you with Sloan now and what course did they decide to do with your care???? Or better yet….what decision did you decide to take in your care???
Thank You,
Jewel
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- November 11, 2011 at 10:14 pm
Hi J,
Thank you so much for your reply…. I did look at your profile and I see that you have been to a few different hospitals. Are you with Sloan now and what course did they decide to do with your care???? Or better yet….what decision did you decide to take in your care???
Thank You,
Jewel
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- November 11, 2011 at 11:05 pm
I was with Sloan from the beginning, but it was sort of a joint approach – the oncologists at NYU and Sloan initially recommended the same approach (Temodar – this was before Ipi was FDA approved) so I would see both oncos as I went through that therapy. When I ran through Temodar there was a difference of opinion between the oncologists as I wanted to undertake IL-2 (NYU weren't very enthusiastic). When I did not respond to IL-2 (still have no regrets about doing it!) I did not want to go onto Ipi as I knew it would preclude me from the BMS anti-PD-1 (MDX-1106) clinical trial drug. Sloan were able to get me a spot on that trial (as an aside their "Experimental Treatment Center" where they treat patients on clinical trial drugs is such a great place to be a patient). I don't believe I could have got the MDX-1106 in many other places, if at all, at that time.
Fast forward to today and I am halfway through my Ipi courses (the MDX-1106 either has not worked or will be having a delayed response). I felt very comfortable with staying at Sloan for Ipi both because of my general experience there, but also because there are so few places and Drs with experience with patients who have had both MDX-1106 and Ipi, and as it is somewhat uncharted territory I want that experience.
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- November 11, 2011 at 11:05 pm
I was with Sloan from the beginning, but it was sort of a joint approach – the oncologists at NYU and Sloan initially recommended the same approach (Temodar – this was before Ipi was FDA approved) so I would see both oncos as I went through that therapy. When I ran through Temodar there was a difference of opinion between the oncologists as I wanted to undertake IL-2 (NYU weren't very enthusiastic). When I did not respond to IL-2 (still have no regrets about doing it!) I did not want to go onto Ipi as I knew it would preclude me from the BMS anti-PD-1 (MDX-1106) clinical trial drug. Sloan were able to get me a spot on that trial (as an aside their "Experimental Treatment Center" where they treat patients on clinical trial drugs is such a great place to be a patient). I don't believe I could have got the MDX-1106 in many other places, if at all, at that time.
Fast forward to today and I am halfway through my Ipi courses (the MDX-1106 either has not worked or will be having a delayed response). I felt very comfortable with staying at Sloan for Ipi both because of my general experience there, but also because there are so few places and Drs with experience with patients who have had both MDX-1106 and Ipi, and as it is somewhat uncharted territory I want that experience.
-
- November 11, 2011 at 11:05 pm
I was with Sloan from the beginning, but it was sort of a joint approach – the oncologists at NYU and Sloan initially recommended the same approach (Temodar – this was before Ipi was FDA approved) so I would see both oncos as I went through that therapy. When I ran through Temodar there was a difference of opinion between the oncologists as I wanted to undertake IL-2 (NYU weren't very enthusiastic). When I did not respond to IL-2 (still have no regrets about doing it!) I did not want to go onto Ipi as I knew it would preclude me from the BMS anti-PD-1 (MDX-1106) clinical trial drug. Sloan were able to get me a spot on that trial (as an aside their "Experimental Treatment Center" where they treat patients on clinical trial drugs is such a great place to be a patient). I don't believe I could have got the MDX-1106 in many other places, if at all, at that time.
Fast forward to today and I am halfway through my Ipi courses (the MDX-1106 either has not worked or will be having a delayed response). I felt very comfortable with staying at Sloan for Ipi both because of my general experience there, but also because there are so few places and Drs with experience with patients who have had both MDX-1106 and Ipi, and as it is somewhat uncharted territory I want that experience.
-
- November 11, 2011 at 9:54 pm
I have had a wonderful experience with Sloan. I have been going there since June 2010. Although I have seen a number of other oncologists at a variety of centers (both in NYC and beyond) Sloan has remained my primary oncologist. While it is possible that experiences vary from oncologist to oncologist at Sloan (I have Dr Wolchok who I find wonderful on every level from expertise to sensitivity) there are a number of institutional reasons I feel very comfortable there:
– friendliness of staff
– patient portal (I find this really useful for tracking appointments, getting bloodwork results, and paying bills)
– experience with a very broad range of therapies – including those they do not directly administer (I was referred elsewhere for IL-2 as Sloan don't offer it, but my oncologist was absolutely familiar with it)
– responsiveness of staff (whenever I have had complications or issues they have been incredibly helpful)
I cannot speak to the surgical expertise as I have used NYU for surgery as I have a long history with my surgeon there. I'm sure plenty of others have experience with the Sloan surgical team as well and can chime in.
I wish you all the best with your visit. I am sure you will find the staff wonderful.
J
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- November 12, 2011 at 2:25 am
Great place as are many others.
As a word of caution though, do not be swept away by credentials alone and get a flase sense of the melanoma messiah that does not exist.
Rather strive for a "fit" that suits you for insurance, scheduling, communication,treatment, follow up and follow through.
I am on your side, but be cautious, because I know of NO one doctor , clinic, hospital or approach that is unquestioned as far as melanoma is concerned; and certainly not one that can scientifically claim they are the "best.
You have made a good choice to go to a place with pros. But don't unconditionally think they are all knowing.
Melanoma is a complex disease and no one doctor or clinic has the absolute answer.
Keep that in your mind.
Charlie S
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- November 12, 2011 at 2:25 am
Great place as are many others.
As a word of caution though, do not be swept away by credentials alone and get a flase sense of the melanoma messiah that does not exist.
Rather strive for a "fit" that suits you for insurance, scheduling, communication,treatment, follow up and follow through.
I am on your side, but be cautious, because I know of NO one doctor , clinic, hospital or approach that is unquestioned as far as melanoma is concerned; and certainly not one that can scientifically claim they are the "best.
You have made a good choice to go to a place with pros. But don't unconditionally think they are all knowing.
Melanoma is a complex disease and no one doctor or clinic has the absolute answer.
Keep that in your mind.
Charlie S
-
- November 12, 2011 at 2:25 am
Great place as are many others.
As a word of caution though, do not be swept away by credentials alone and get a flase sense of the melanoma messiah that does not exist.
Rather strive for a "fit" that suits you for insurance, scheduling, communication,treatment, follow up and follow through.
I am on your side, but be cautious, because I know of NO one doctor , clinic, hospital or approach that is unquestioned as far as melanoma is concerned; and certainly not one that can scientifically claim they are the "best.
You have made a good choice to go to a place with pros. But don't unconditionally think they are all knowing.
Melanoma is a complex disease and no one doctor or clinic has the absolute answer.
Keep that in your mind.
Charlie S
-
- November 12, 2011 at 10:57 am
I have been a patient at Sloan since 2009. No one wants to be sick, but Sloan has been wonderfully supportative. I cant add much to the prev. comments but a great thing is that all doctors talk to each other. When you call with a question, you will be answered quickly and just calling a secretary or nurse will get you to the right place .
As with anywhere, be your own patient advocate. Do your own research and ask questions. The people there will give you all the time you need. You are not rushed. good luck
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- November 12, 2011 at 10:57 am
I have been a patient at Sloan since 2009. No one wants to be sick, but Sloan has been wonderfully supportative. I cant add much to the prev. comments but a great thing is that all doctors talk to each other. When you call with a question, you will be answered quickly and just calling a secretary or nurse will get you to the right place .
As with anywhere, be your own patient advocate. Do your own research and ask questions. The people there will give you all the time you need. You are not rushed. good luck
-
- November 12, 2011 at 10:57 am
I have been a patient at Sloan since 2009. No one wants to be sick, but Sloan has been wonderfully supportative. I cant add much to the prev. comments but a great thing is that all doctors talk to each other. When you call with a question, you will be answered quickly and just calling a secretary or nurse will get you to the right place .
As with anywhere, be your own patient advocate. Do your own research and ask questions. The people there will give you all the time you need. You are not rushed. good luck
-
- November 12, 2011 at 8:08 pm
Hi Jewel,
I've had excellent care at Sloan Kettering. Their network of doctors enables support for side issues that come up post-treatment, and they have been excellent about running interference with insurance. They are developing state of the art treatments, and are innovative in trying different approaches.
Paul
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- November 12, 2011 at 11:49 pm
Hi Jewel,
I'm treated at Sloan as well, I'm very happy with my doctor there. It can get a little confusing with their different buildings, parking, and jittneys. Are you going to the main hospital or the 53rd street building? I'm going to Yale/New Haven on Monday for IL-2 (they don't do it @ Sloan) but if you have any questions about parking, driving, the shuttle/jittney, shoot me a message and I'll be glad to try to help.
karen
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- November 12, 2011 at 11:49 pm
Hi Jewel,
I'm treated at Sloan as well, I'm very happy with my doctor there. It can get a little confusing with their different buildings, parking, and jittneys. Are you going to the main hospital or the 53rd street building? I'm going to Yale/New Haven on Monday for IL-2 (they don't do it @ Sloan) but if you have any questions about parking, driving, the shuttle/jittney, shoot me a message and I'll be glad to try to help.
karen
-
- November 12, 2011 at 11:49 pm
Hi Jewel,
I'm treated at Sloan as well, I'm very happy with my doctor there. It can get a little confusing with their different buildings, parking, and jittneys. Are you going to the main hospital or the 53rd street building? I'm going to Yale/New Haven on Monday for IL-2 (they don't do it @ Sloan) but if you have any questions about parking, driving, the shuttle/jittney, shoot me a message and I'll be glad to try to help.
karen
-
- November 12, 2011 at 8:08 pm
Hi Jewel,
I've had excellent care at Sloan Kettering. Their network of doctors enables support for side issues that come up post-treatment, and they have been excellent about running interference with insurance. They are developing state of the art treatments, and are innovative in trying different approaches.
Paul
-
- November 12, 2011 at 8:08 pm
Hi Jewel,
I've had excellent care at Sloan Kettering. Their network of doctors enables support for side issues that come up post-treatment, and they have been excellent about running interference with insurance. They are developing state of the art treatments, and are innovative in trying different approaches.
Paul
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