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April 30, 2013 at 9:23 pm #21227
I am the caregiver for my husband, we got the results of the recent Pet/CT.
It shows hypermetabolic activity in the lung, pancreas, kidney, leg and liver and lymph nodes near the esophagus. We need auth to see his melanoma specialist, that he had already received treatment in the past with chemo, and immutherapy.
we hope he is a candidate for IPI, I wonder if sometype of surgery can be done to remove some of the melanomas. any suggestions? thanks.April 30, 2013 at 9:28 pm #60299Catherine PooleKeymaster
Where is your husband going for treatment? He should be seen by a specialist if possible. What part of the country do you live in?April 30, 2013 at 9:46 pm #60300 We live about two hours away from Los Angeles.
He is going back with the specialist in The Los Angeles clinic.May 1, 2013 at 5:09 am #60301DianapParticipant
Whilst UK based,in October my recurrence (leg prior) was pancreas, buttock, lung, aortocaval lymph nodes, T1 bone mets, and then Jan 13 is was making it way towards my brain. This ‘tangerine’ size tumour has been removed successfully, over 4 days in Cambridge.
I am on ippy at the moment. I had one does, then stopped to remove brain tumour, had second dose and next one 17th May. I am not sure how many of us are on ippy at the moment, but there is a thread showing peoples ‘journeys’ just a few topics further down and one on ippy the other day.
I am sure someone will know all about where you are going in Los. Ang. and be able to give you more informative information.
Kind regards and best wishes
DianaMay 1, 2013 at 10:24 pm #60302
Hello to All,
We saw the specialist dr today. no surgeries, but my husband will be tested for the BRAF mutation, and we got paperwork to read about a clinical trial MK- 3475.
I am so thankfull that he can start on some treatment.
May 18 there is a melanoma conference in Dowtown LA, dr. said i will hear all about MK-3475 and to call him if I have questions. He is so reassuring.
for this trial, we don’t need auth from insurance.May 4, 2013 at 4:01 pm #60303AnonymousGuest
I’m soooo glad you guys made it into the MK 3475 trial. When we were trying to get into the BMS equivalent at MSK, they told us that though accural of mucosal melanoma patients was small, they seemed to respond just like skin melanoma to PD-1. That’s good news!
JeffMay 14, 2013 at 11:46 pm #60304
We just got home from the clinic, the eligibilty criteria is taking time, more ct scans, biopsy and MRI of the brain. finally the appt is for May 23. I am thankful we are almost there, and desperate that is not soon enough. you know my husband is 54, father of 5 and we had our first grandchild.
he used to work long hours, it is difficult to see him in pain these days, fatigued, and losing weight, hopefully the treatment will work.
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