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Father just been Diognosed Need Help

Forums Ocular Melanoma Community Father just been Diognosed Need Help

  • Post
    bexchood
    Participant

    Hello my father has just been told that his Uveal Melanoma that he had in his eye ball & removed over a year ago has spread to his lungs & liver. He has been told its very agressive & that we have no treatsments that have a higher success rate than 4-10% – The treatment is Immunotheripy, He has been given 3-8months at this point,. He is still the same & the only thing that has changed is his energy levels where he gets tired more easily & naps often. 

    I am wondering If anyone has or had Uveal or choroidal melanoma currently or in the past. Any info, diet tips, treatments, signs of what will happen when he starts to decrease?? We are still in HUGE shock & just would love some info. We have been told this type of melanoma doesnt respond to treatments is this information correct?? Thanks everyone in advance

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      MelanomaMike
      Participant
      Hi Bexchood, im sorry for yer Dad to have to deal with a “2nd” term (so-to-speak) with Melanoma. Like your Dad, i to have it in my lungs(both of em’but originated from my left leg & metastasized) it was biopsied last year in late 2017 started Keytruda by Nov 2017 (did #7 infusions then stopped due to progression) started new meds Opdivo/Yervoy im #3 into it presently and im still here bro! Dont listen to bs of how many days yer Dad has left here on earth, mine is aggressive to bro, immunal therapies will help him live longer! Yervoy & Opdivo have a greater survival rate then what you mentioned (i believe) Get him going ASAP! Im sure, like myself, surgery is out the question?….prayers are with you both! Mike…

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      Bubbles
      Participant

      I am sorry for what you and your dad are dealing with.  Melanoma is no fun and uveal and mucosal melanoma can be even more difficult.  Here is a basic primer for general information: 

      https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

      Fatigue is a pretty consistent side effect of any immunotherapy and may explain some of what your dad is experiencing.  I hope your dad is being seen by a melanoma specialist….someone very familiar with melanoma.  It can make all the difference as much has changed in melanoma treatment in the past 6-7 years.  

      Additionally, there are trials available for melanoma patients as well.  Here is one drug that has been in studies for folks with uveal melanoma recently – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/trial-option-for-folks-with-uveal.html

      Additionally, even though he is dealing with uveal melanoma…he needs to know his BRAF status.  It is possible that he may be able to use BRAF inhibitors…and you can't know unless his tumors were tested.  

      Hope this helps.  Hang in there.  Celeste

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