› Forums › General Melanoma Community › Who’s been to NIH/NCI?
- This topic has 18 replies, 5 voices, and was last updated 12 years, 2 months ago by boot2aboot.
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- February 15, 2012 at 12:12 am
Hi there.I have an adrenal tumor and a tumor next to the pancreas that need to be removed surgically since I have failed IL2, MDX-1106 and Yervoy. It’s been decided to try and get into the TIL trial.
My doctors office contacted NCI today and I an waiting to hear from them on what information I need to send. I’m just wondering how long it has taken others to get in for a consult? We as patients always want things done yesterday. 🙂 I’m just concerned how long it might take for me to get everything compiled and sent and then how long it will take got them to get me scheduled. Every day we wait us another say these tumors are growing and becoming harder to remove surgically.
Also, do you know if they will remove just part of a tumor for TIL if they are unable to remove the whole thing?
Thanks!!
~Angela
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- February 15, 2012 at 1:17 am
My husband was a patient at NIH about this time last year. It took us less than a week to get an appt. We waited 2 days for his surgery after our consultation out there. They move very quickly and efficiently. Much more so than the private sector. I can not say enough great things about our experiences. It was extra ordinary care. Good luck.
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- February 15, 2012 at 1:17 am
My husband was a patient at NIH about this time last year. It took us less than a week to get an appt. We waited 2 days for his surgery after our consultation out there. They move very quickly and efficiently. Much more so than the private sector. I can not say enough great things about our experiences. It was extra ordinary care. Good luck.
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- February 15, 2012 at 1:17 am
My husband was a patient at NIH about this time last year. It took us less than a week to get an appt. We waited 2 days for his surgery after our consultation out there. They move very quickly and efficiently. Much more so than the private sector. I can not say enough great things about our experiences. It was extra ordinary care. Good luck.
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- February 15, 2012 at 3:06 am
Angela,
My husband is also a patient with NIH and we also cannot say enough positive things about them. When you are in their care they do move quickly. My husband did not do TIL, but has had IL-2 and two major surgeries there and anything they handled we always felt like he was in the best hands. Of course we are due to go back for scans next week. I want to wish you the best and hope they get back to you and get you in.
Rebecca
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- February 15, 2012 at 3:06 am
Angela,
My husband is also a patient with NIH and we also cannot say enough positive things about them. When you are in their care they do move quickly. My husband did not do TIL, but has had IL-2 and two major surgeries there and anything they handled we always felt like he was in the best hands. Of course we are due to go back for scans next week. I want to wish you the best and hope they get back to you and get you in.
Rebecca
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- February 15, 2012 at 3:06 am
Angela,
My husband is also a patient with NIH and we also cannot say enough positive things about them. When you are in their care they do move quickly. My husband did not do TIL, but has had IL-2 and two major surgeries there and anything they handled we always felt like he was in the best hands. Of course we are due to go back for scans next week. I want to wish you the best and hope they get back to you and get you in.
Rebecca
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- February 15, 2012 at 6:30 am
I went for an assessment for a trial with Dr Rosenberg and it took about 2 weeks because I needed to get Mayo to send them like 15 unstainned slides of my melanoma sent, otherwise it would have been just a week…
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- February 15, 2012 at 6:34 am
PS…Joe went to the NIH and started TIL and he isn't doing well here is his page http://www.caringbridge.org/visit/joebillek I guess the treatment friend his bone marrow and it didn't recover.
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- February 15, 2012 at 6:34 am
PS…Joe went to the NIH and started TIL and he isn't doing well here is his page http://www.caringbridge.org/visit/joebillek I guess the treatment friend his bone marrow and it didn't recover.
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- February 15, 2012 at 6:34 am
PS…Joe went to the NIH and started TIL and he isn't doing well here is his page http://www.caringbridge.org/visit/joebillek I guess the treatment friend his bone marrow and it didn't recover.
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- February 17, 2012 at 9:38 pm
Lynn,
TIL at NIH sounds scary especially after Val…Dr Weber did an Adoptive Cell Transfer Webinar and he talked about NIH's protocol…not for the faint hearted….
boots
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- February 17, 2012 at 9:38 pm
Lynn,
TIL at NIH sounds scary especially after Val…Dr Weber did an Adoptive Cell Transfer Webinar and he talked about NIH's protocol…not for the faint hearted….
boots
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- February 17, 2012 at 9:38 pm
Lynn,
TIL at NIH sounds scary especially after Val…Dr Weber did an Adoptive Cell Transfer Webinar and he talked about NIH's protocol…not for the faint hearted….
boots
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- February 16, 2012 at 4:43 pm
What all did you have to collect to have sent them? I have heard that they will want the slides from the original diagnosis. I'm assuming that they will want the treatment notes from the doctors from the IL-2, MDX-1106 and Yervoy and the most recent scan write ups and copies on disc. I'm just wondering if I'm going to have to track down everything from the last five years? I have a binder that has most things in it except for the last year basically. So, I'm hoping I just have to get notes from the last year and the slides and then I'll be good to go.
I'm a little concerned about my slides because at one point they were lost and I'm not sure if they ever were found. =(
I have a message in with Linda at NIH and I'm waiting for a phone call back to tell me what I need to collect. I'm getting anxious sitting around and waiting. All of the hurry up and wait we experience time after time gets old.
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- February 16, 2012 at 4:43 pm
What all did you have to collect to have sent them? I have heard that they will want the slides from the original diagnosis. I'm assuming that they will want the treatment notes from the doctors from the IL-2, MDX-1106 and Yervoy and the most recent scan write ups and copies on disc. I'm just wondering if I'm going to have to track down everything from the last five years? I have a binder that has most things in it except for the last year basically. So, I'm hoping I just have to get notes from the last year and the slides and then I'll be good to go.
I'm a little concerned about my slides because at one point they were lost and I'm not sure if they ever were found. =(
I have a message in with Linda at NIH and I'm waiting for a phone call back to tell me what I need to collect. I'm getting anxious sitting around and waiting. All of the hurry up and wait we experience time after time gets old.
-
- February 16, 2012 at 4:43 pm
What all did you have to collect to have sent them? I have heard that they will want the slides from the original diagnosis. I'm assuming that they will want the treatment notes from the doctors from the IL-2, MDX-1106 and Yervoy and the most recent scan write ups and copies on disc. I'm just wondering if I'm going to have to track down everything from the last five years? I have a binder that has most things in it except for the last year basically. So, I'm hoping I just have to get notes from the last year and the slides and then I'll be good to go.
I'm a little concerned about my slides because at one point they were lost and I'm not sure if they ever were found. =(
I have a message in with Linda at NIH and I'm waiting for a phone call back to tell me what I need to collect. I'm getting anxious sitting around and waiting. All of the hurry up and wait we experience time after time gets old.
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