Desmoplastic Melanoma Treatment Options

Posted By
SD
4/8/2013 10:16am
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SD
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Replies: 3

Hello, 

I'm 33 years old male from Delhi India. I've been diagnosed with metastatic Desmoplastic Melanoma  stage 4. It originated at a mole on scalp and metastasized to salivary gland and lymph nodes nearby. All of it was discovered almost simultaneously and was surgically removed (with wide excision). PET CT now shows NED. It has been one month since the surgery and I am now struggling to find sound advice or treatment from doctors in India. I have been to the best ones here. They all say its too rare for them and they are not sure of the best course of action, although they have mentioned interferon -alpha as one of the options.

I have decided to come to US for a month to explore further options. 

My most pressing concerns at the moment are - 

What should be the course of treatment for me now?

Which doctor/hospital should I consult with in US - I'll be travelling to New York first and have friends there. NY and surrounding area will be most comfortable for me. So far I'm leaning towards about Dr Sanjiv aggarwala of St Lukes's UHN, in PA. (based on reference from doctors here, but they dont know him directly). The other frequent recommendation is MD Anderson in Houston. Any other better ideas?

I would be obliged for any guidance/suggestions you all can offer.

Thank you!

SD

Hello SD,

So sorry to meet you in these circumstances, but welcome to this wonderfully supportive forum.  I don't know anything about desmoplastic melanoma, as mine is cutaneous,  but I do know that the melanoma specialists at Memorial Sloan-Kettering Cancer Center in NYC are excellent and world-renowned.  My own physician there is  Dr. Jedd Wolchok, but others see Dr. Paul Chapman.  Another nearby specialist with whom I have consulted is Dr. Keith Flaherty at Mass. General in Boston.

Hopefully this information will help you find healing treatment here in the US.  I wish you good luck and good health!

Lear

 

Hello Lear, 

Thank you for your kind words and for your reply. I will check about the doctors you have suggested.

Regards,

SD

Anonymous - (1/8/2016 - 12:21pm)

Hello 

i found your case , my father also has desmoplastic melanome fase 3, and already had succesful surgery, the problem is the same as your, the doctor does not know wich treatment will be best, or just to wait for the cancer to come back. 

Could you share the result of your case ? 

Thanks !!

DJ