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August 6, 2012 at 7:35 pm #20529
My wife was diagnosed with Stage IV Melanoma(BRAF Negative) about a 1yr ago. I immediately searched the internet and found this forum. It has provided me guidance on many occasions and I have read it daily for advice and updates. As a result of this forum, I found Dr. Weber at Moffitt Cancer Center and he has been our doctor for the past year. She immediately started on IPI which stabilized the 7 mets(3 liver, 3 under the arm, and 1 in the abdomen) for about 6 months. Afterwards, we were blessed with the opportunity to participate in an Anti-PD1 trial which we just found out that she failed. He has mentioned TIL, but there aren’t any at Moffit that she qualifies for. The options appear to be limited to IL-2 and chemotherapy. We love Dr. Weber, but the travel has been difficult as we live in North Alabama. My question is what do you folks think of Sarah Cannon in Nashville?(2 hrs away) If those are the only options, then I may look for a doctor there since it is so much closer. Are there any recommendations for doctors?
Thanks!August 6, 2012 at 8:30 pm #55768rochelleParticipant
I am sorry to hear about this outcome for your wife…sometimes a second round of Yervoy may be appropriate as well as localized radiation. I do know a young woman (unfortunately not on this forum) who has had TIL @ the National Cancer Institute. I have the TIL info if you’d like to get my email from Catherine I would be happy to forward it to you. I know travel is not easy for you, but having the info is a good start.
MarthaAugust 6, 2012 at 8:47 pm #55769ALouParticipant
If you are coming to Nashville I would recommend Dr Infante at Sarah Cannon to see what trials they have available. Great guy, I have consulted with them a few times, but they are small compared to what you are used to at Moffitt. I believe I am getting the best care at Vandy through Dr Jeffrey Sosman. I just can’t say enough about how knowledgable, hard working, and caring he is. Also, he does a great job coordinating with surgical oncology, radiation oncology, radiology, etc.August 6, 2012 at 9:24 pm #55770 I absolutely recommend our scientific board member Dr. Infante at Sarah Cannon and I’ve heard nothing but glowing reviews of Sarah Cannon. They have travel grants too. I would call ahead to see what they have available. If you want to read about TIL at NIH, google the blog of Melanoma Mom, I think that is who Rochelle was referring to. But they are VERY strict about who they let in, preferably very young body builders..so if she didn’t qualify elsewhere, not sure that would happen at NIH. Let us know how things are going and how we can help you.August 7, 2012 at 12:07 am #55771 Thanks so much for the recommendations and quick replies. Dr. Weber did mention ongoing TIL trials at MD Anderson and NCI. My wife is young at 40, and she just had a brain mri(no mets), so TIL is still a possibility. We are currently waiting on a call from Dr. Weber to discuss these options. Any info. regarding these trials is greatly appreciated. I am about to check out the blog that Catherine recommended. Thanks again.
BryanAugust 7, 2012 at 7:20 pm #55772AnonymousGuest
Definately check out TIL at the NIH! Your wife may be an ideal candidate considering her age. It IS a grueling procedure but the response rates (partial and complete) are the best of all the trials according to our Onc.
Sarah Cannon has been great to us. They follow up with my wife Rachel (whose fighting brain mets and extensive lung & liver progression), keeping her informed as to what they have available, the entry criteria and helping to coordinate scans. Super, super team.
Good luck Bryan and please post on the Caregivers forum.
JeffAugust 8, 2012 at 12:03 am #55773
I will definitely check out the TIL clinical trial at NIH, which seems to get a few more positive reviews than MD Anderson, although I have no idea of the response rates at either institution. Thanks jeffb for the recommendation.August 9, 2012 at 10:54 pm #55774 There have been too few patients in the TIL studies for any definitive answer about their success. They are very strict at NCI/NIH about entry, so be sure and talk to them first. Also, keep in mind, it is a very difficult procedure. You might want to look at our TIL webinar (click thru) above an also go to the blog of Melanoma Mom. She tells a great blog about her experience at NIH. Let us know how things are going.August 14, 2012 at 8:49 pm #55775dallyup4Participant I have to chime in as well about Dr. Infante at Sarah Cannon in Nashville, wonderful doctor and staff, I went there June of 2011 to start the Zelboraf trial and went back once a mo. until I was able to transfer to Dallas which was alot closer for me. Loved it in Nashville tho, didn’t want to switch facilities but couldn’t afford not to. The American Cancer society has a hospitility house where you can stay free of charge, they have a shuttle and some free meals and lots of wonderful people there. I went back to MD Anderson after my trial was over but continue taking my Zelboraf. I highly recommend them as well. I was diag. 2 yrs ago, stage IV and as of last wk, I am NED as long as the Zel keeps working! Good luck, which ever way you decide to go and you are in my prayers.August 18, 2012 at 3:51 am #55776cindy5Participant My son sees Dr. Infante at Sarah Cannon. He is totally confident and comfortable with him and his wonderful staff. Very helpful with any needs. Dr. Infante truely has a passion to find the best treatment for his patients. He thinks out loud and includes you in the decision-making process. My son has stayed at Hope Lodge a few times…just remember to call first thing in the morning to reserve your room as it fills up quickly sometimes.August 18, 2012 at 12:10 pm #55777 Sarah Cannon also offers travel scholarships. I have heard nothing but positive remarks about the hospital and Dr. Infante. I think his background in public health from Hopkins gives him a broader perspective of putting the patient at the center of things than most oncology professionals.August 20, 2012 at 11:03 pm #55778margaretrogers57Participant I’d like to chime in in support of Vandy. We see Dr. Sosaman and he’s great. We’re currently in a trial for metastic melanoma with ocular primary and had our first scan results today. The two larger (about 1.3 and 1.5 cm) had shrunk a little and the rest of the very small tumors throughout the liver were stable. Great Dr. and great team. Margaret
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