› Forums › General Melanoma Community › il-2 treatment facilities
- This topic has 25 replies, 9 voices, and was last updated 12 years, 5 months ago by JerryfromFauq.
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- May 23, 2011 at 4:09 am
So, looks like I may be going the il-2 route as my stage 4 Nras positive mutation doesn't have many options, and il-2 is the only thing offering a proven continued durable response. Although the percentage isn't high, at least there is the potential of a long term response. Anyways, I am hoping that some of you can tell me about the facilities and il2 teams and the care provided, especially any in California. I had decided on a chemo trial to start thursday, but I'm having major second thoughts. This will be my first treatment.
So, looks like I may be going the il-2 route as my stage 4 Nras positive mutation doesn't have many options, and il-2 is the only thing offering a proven continued durable response. Although the percentage isn't high, at least there is the potential of a long term response. Anyways, I am hoping that some of you can tell me about the facilities and il2 teams and the care provided, especially any in California. I had decided on a chemo trial to start thursday, but I'm having major second thoughts. This will be my first treatment. pet/ct 2 weeks ago showed a number of small lung tumors, largest grew from 8 mm to 1.1cm. I like what I've read about Til therapy, but need at least a 2cm tumor to qualify. Also, newly found bone met in a rib and lymph node under my armpit lighting up. Any comments/experiences would be most welcome. Thank you. Robert
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- May 23, 2011 at 4:55 am
The Proleukin web site will show you where treatment centers are located: http://www.proleukin.com/. All the best.
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- May 23, 2011 at 4:55 am
The Proleukin web site will show you where treatment centers are located: http://www.proleukin.com/. All the best.
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- May 23, 2011 at 1:30 pm
Dear Robert,
I cant advise you about Il 2 or treatment centers that do it, but sorry that your melanoma is growing larger and popping up in new places. I am sure others will chime in soon.
Best wishes,
Vermont_Donna, stage 3a, NED
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- May 23, 2011 at 1:30 pm
Dear Robert,
I cant advise you about Il 2 or treatment centers that do it, but sorry that your melanoma is growing larger and popping up in new places. I am sure others will chime in soon.
Best wishes,
Vermont_Donna, stage 3a, NED
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- May 23, 2011 at 2:04 pm
Robert,
I can't help you with the center, but one of frequent posters Jane from Maine has compliled a IL2 tip sheet available on her website at http://www.operationsunshield.org/
Jerry from Cape Cod
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- October 9, 2011 at 7:46 am
Jane's notes moved. Try http://melanomaresources.info/jane.html#homenotes
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- October 9, 2011 at 7:46 am
Jane's notes moved. Try http://melanomaresources.info/jane.html#homenotes
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- October 9, 2011 at 7:46 am
Jane's notes moved. Try http://melanomaresources.info/jane.html#homenotes
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- May 23, 2011 at 2:04 pm
Robert,
I can't help you with the center, but one of frequent posters Jane from Maine has compliled a IL2 tip sheet available on her website at http://www.operationsunshield.org/
Jerry from Cape Cod
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- May 23, 2011 at 3:39 pm
Kaiser has one of the highest volume IL-2 centers in the country in Riverside. Kaiser patients getting IL-2 are all sent there (so you probably wouldn' be asking if your were insured by them). I was treated by them with IL2 last year and recommend them — but I'm almost certain it's only available to Kaiser patients.
Lacking any other referrals/recommendations, you might look for it being given at an NCI-designated cancer center — http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html. You could cross-walk that list against the Prolekin treatment centers list.
Also if everything else is equal, one close by makes visits during during treatment and the trip home after each cycle easier, e.g., UC Davis if you're in Sacramento.
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- May 23, 2011 at 3:39 pm
Kaiser has one of the highest volume IL-2 centers in the country in Riverside. Kaiser patients getting IL-2 are all sent there (so you probably wouldn' be asking if your were insured by them). I was treated by them with IL2 last year and recommend them — but I'm almost certain it's only available to Kaiser patients.
Lacking any other referrals/recommendations, you might look for it being given at an NCI-designated cancer center — http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html. You could cross-walk that list against the Prolekin treatment centers list.
Also if everything else is equal, one close by makes visits during during treatment and the trip home after each cycle easier, e.g., UC Davis if you're in Sacramento.
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- May 24, 2011 at 1:44 am
Unfortunately, I cannot tell you about California, but I do know that Mass General Hospital in Boston where my husband goes does do IL-2.
Michelle, wife of Don, Stage IV
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- May 24, 2011 at 1:44 am
Unfortunately, I cannot tell you about California, but I do know that Mass General Hospital in Boston where my husband goes does do IL-2.
Michelle, wife of Don, Stage IV
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- May 24, 2011 at 9:08 pm
Thank you to all of you that responded to my post. I am still debating treatment options but determined to make my decision this week. This is my list….
1. Biochemotherapy at California Pacific Medical Center in SF.
2. IPI at same or UCSF.
3. IL-2 at UCSF
4. Clinical trial of carboplatin, paclitaxel and axitinib at UCSF
Because I presented with spot on my back, then directly to lung and bone via blood, the Biochemotherapy option seems to make a lot of sense according to Doc at CPMC. It seems that those whose skin melanoma goes through lymph nodes first have some success with immunotherapy like IL-2 while cases like mine have done pretty well with Biochemotherapy. Because this will be my first treatment I would love to hit a home run but definitely don't want to exclude myself from other trials as second line.
I'm anxious to get started destroying this disease but at the same time want to make sure I've done my due diligence so I'm not looking backwards in a week or two wondering …should I have done ?????? I want to move forward with every bit of confidence and optimism in order to support my immune system.
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- May 24, 2011 at 9:08 pm
Thank you to all of you that responded to my post. I am still debating treatment options but determined to make my decision this week. This is my list….
1. Biochemotherapy at California Pacific Medical Center in SF.
2. IPI at same or UCSF.
3. IL-2 at UCSF
4. Clinical trial of carboplatin, paclitaxel and axitinib at UCSF
Because I presented with spot on my back, then directly to lung and bone via blood, the Biochemotherapy option seems to make a lot of sense according to Doc at CPMC. It seems that those whose skin melanoma goes through lymph nodes first have some success with immunotherapy like IL-2 while cases like mine have done pretty well with Biochemotherapy. Because this will be my first treatment I would love to hit a home run but definitely don't want to exclude myself from other trials as second line.
I'm anxious to get started destroying this disease but at the same time want to make sure I've done my due diligence so I'm not looking backwards in a week or two wondering …should I have done ?????? I want to move forward with every bit of confidence and optimism in order to support my immune system.
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- May 29, 2011 at 12:05 am
Not close to you but my husband is receiving his treatments of IL-2 from Dr. Lawrence Flanherty at Karmanos Caner Center in Detroit MI. Fantastic Doctor and facilily.
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- May 29, 2011 at 12:05 am
Not close to you but my husband is receiving his treatments of IL-2 from Dr. Lawrence Flanherty at Karmanos Caner Center in Detroit MI. Fantastic Doctor and facilily.
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- June 7, 2011 at 4:30 am
For the record, you do not need a 2 cm tumor to enroll in the TIL trial at MD Anderson Cancer Center in Houston, TX. TILs have been grown from specimen as small as a punch biopsy. There is no guarantee that T cells will grow (60-70% success rate), and it may take up to 5 weeks, but it is still an option if your tumor is surgically resectable.
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- June 7, 2011 at 4:30 am
For the record, you do not need a 2 cm tumor to enroll in the TIL trial at MD Anderson Cancer Center in Houston, TX. TILs have been grown from specimen as small as a punch biopsy. There is no guarantee that T cells will grow (60-70% success rate), and it may take up to 5 weeks, but it is still an option if your tumor is surgically resectable.
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- June 7, 2011 at 4:31 am
For the record, you do not need a 2 cm tumor to enroll in the TIL trial at MD Anderson Cancer Center in Houston, TX. TILs have been grown from specimen as small as a punch biopsy. There is no guarantee that T cells will grow (60-70% success rate), and it may take up to 5 weeks, but it is still an option if your tumor is surgically resectable.-
- June 7, 2011 at 4:49 pm
oh yeah, the Contego thing has MD Anderson and Moffitt (and other involved) too, "Contego is based on the TIL adoptive cell therapy being used at the National Cancer Institute, MD Anderson Cancer Center and the H. Lee Moffitt Cancer & Research Institute."
Sounds like NCI found a strong group to possibly commercialize TIL.
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- June 7, 2011 at 4:49 pm
oh yeah, the Contego thing has MD Anderson and Moffitt (and other involved) too, "Contego is based on the TIL adoptive cell therapy being used at the National Cancer Institute, MD Anderson Cancer Center and the H. Lee Moffitt Cancer & Research Institute."
Sounds like NCI found a strong group to possibly commercialize TIL.
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- June 7, 2011 at 4:31 am
For the record, you do not need a 2 cm tumor to enroll in the TIL trial at MD Anderson Cancer Center in Houston, TX. TILs have been grown from specimen as small as a punch biopsy. There is no guarantee that T cells will grow (60-70% success rate), and it may take up to 5 weeks, but it is still an option if your tumor is surgically resectable.
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