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October 1, 2013 at 4:48 am #21608MuruParticipant
I am living out of India.
I am a melanoma Stage III patient with Unresectable tumor in my Neck. I have multiple Tumors in the Neck and LaryngoPharynx area.
Please find attached the summary of the treatment.
Summary of the treatment
I had mucosal melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed in the first surgery . I was under constant observation. I was cancer free for 5.5 years. in Jan 2013 melanoma has recurred again in my larynx area. . Now my entire Voice Box has been removed on Feb 6th 2013 during the second surgery. ImmunoHistoChemistry for C-KIT had done and it had come as positive in my specimen. My Consutant said there is no need to do C-KIT mutation and we could take the C-KIT inhibitor Imatinib oral tablet. I took Imatinib tablets for about a month.
But still Melanoma has come back to me again in Right Side Level II and Level IV Lymphnodes within 3 months of my 2nd Surgery. I had undergone 3rd Surgery for the radical Neck Dissection of Lymphnodes in May 2013.I was under Interferon Injection for the last 3 months, Melanoma has recurred again in Laryngopharynx and Neck nodes. Surgeons have told that surgery is no more possible for my case. As per PET CT it has not spread to any other internal part of the body. But still it means I am having high risk of getting into Stage IV. My braf mutation is negative. I need your advice on how Can I come out of this Melanoma successfully .
I am trying to see best option for my disease. IPI vs TIL Vs Biochemo.
My oncolgist recommends to take ipi for 6 months with 8 doses. But it is too costly to import to india. it costs about $200kUSD, which is too expensive.Do we have any way to participate in clinical trials where in the medicine cost couldbe free and hospital expenses + other expenses could be less than 200KUSD.in US, Will they allow international patients without US Insurance.
How about the results of TIL trials with respect to IPI? Is it better?
Also how do we compare biochemo resuts with IPI?
I need to take one strong decision based on your feedback.
Please share your views.
MuruOctober 1, 2013 at 1:56 pm #62658Catherine PooleKeymaster
Israel is probably your closest country for clinical trials. I don’t know how they might charge you, but they have the promising IPI/PD1 trial. Here are two locations to contact:
Israel Lotem, Michal Jerusalem +972508573528
Jacob Ramat-Gan +97235304907
I am uncertain whether you would be accepted into TIL with mucosal, but that is also offered at NCI free of charge in US and also Israel.October 1, 2013 at 7:58 pm #62659AnonymousGuest
Sorry to hear of your situation. You have gone though much.
My wife Rachel had mucosal melanoma (started in the maxillary sinus) and was being carefully reviewed by the NCI TIL program but she was finally excluded because of her prior breast cancer (11 years earlier).
So, at the time (a couple of years ago), NCI was accepting mucosal melanoma patients into their TIL program.
As Catherine said, the IPI/PD1 trials are also showing great promise. They do not exclude mucosal melanoma patients.
God’s speed in your search.
JeffOctober 2, 2013 at 2:16 am #62660MuruParticipant
Thanks Catherine and Jeff for your valuable information….
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