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I need hope

Forums General Melanoma Community I need hope

  • Post
    Manubuzzi
    Participant

     

     

    Greetings to all,
     
    I wanted to know the general and overall opinion on the steps that my family is taking to fight against my mother's illness.  Her first symptom appeared en January of this year, it was limited mobility and paralysis of her arm and leg.  After some tests, she had an operation (2/24) and a tumor was extracted from her brain. Biopsy Diagnosis: Melanoma.  PET Scan results (3/29):  2 brain tumors, 1 tumor in the liver, and 1 adrenal gland.  Since the operation, my mother has been very weak and unable to walk.  She had lost her ability to speak, but recuperated it quickly.  Now, for the last few days, she is starting to again have difficulties with her speech and it's getting worse.  We aren't sure of the real cause of this new symptom, given that it has been 40 days since the operation and we hadn't seen any type of relapse or problems until recently.  Now, the doctor has tripled the Corticoid dosage to see if it helps improve her speech.  
     
    My mother is afraid, and her five children, myself included, are terrified.  Dr. Silva, the best specialist in Argentina, with whom we had a consultation yesterday (4/4) said that our first step is Temodar and radiation.  Then, depending on the results, we could choose between 2 treatments for the immune system (the names of which I do not yet have.)  I am writing today to hear some feedback of personal experiences with Temodar and radiation, the side-effects, the effectiveness, the dosages, etc.  
     
    I can't seem to find the words to gove her strength or comfort.  She had been a completely healthy person until 3 months ago.  We were not prepared in the slightest for a situation like this.  We are devastated and desperate.  Any comment, word of wisdom, advice, or help, would be much appreciated.
     
    Thank you,
     
    Manuel
    Son of patient 
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  • Replies
      dian in spokane
      Participant

      Manuel,

      I am so sorry that your family is facing this very difficult diagnosis. First of all, I want to tell you that you have posted this on the 'off topic' forum, which many patients here do not even look at. This board is more for talking about things unrelated to melanoma.. like..tv shows and grandkids and favorite music and such. So you will see more responses if you copy this post and put it over on the main Bulletin Board.

      Unfortunately, treatments for advanced melanoma are not that great. It sounds like your mother is likely being treated the same way she would be here in the states. Radiation, Temodar, sometimes a mix of Temodar and Thalidomide are often used for brain metastes. With your mom, treating the brain tumors is of the utmost importance, and while those other tumors can be just as deadly, the most urgent thing is to deal with those brain tumors.

      Hopefully, the remaining tumors in her brain can be dealt with with radiation and Temodar, and maybe even the liver and adrenal tumors can be surgically removied. Surgery is a great treatment for melanoma, and most of the people I know who have survived brain mets have done so with some sort of surgery.

      There are some other things out there that may be in store for your mom, like bio chemo, IL2 or even the new drug Yervoy. If you were here in the US, we would urge you to go to a doctor or center that has lots of melanoma experience and melanoma specialists.

      I'm sure everyone in the family is terrified. Speaking only from my experience as a mother, I can tell you that the best thing you can do is to spend real, quality time with your mother, and tell her how much you love her and appreciate the life she has given you. Sometimes humans put off saying things until it is too late, and that is not the thing to do now. NOW is when you must show her all of your love and strength.

      Good luck to you and yours. I hope you will come back to the board and let us know how things go with your mother.

       

      dian

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        Manubuzzi
        Participant

         

        Dian,
         
        Ok, I've just posted my message to the main bulletin board.  With the language differences and my nerves, I made a mistake.  Thank you so much for the suggestion!  Thank you for your words of support, I needed to hear them.  I know that there is hope, not much, but hope nonetheless and we are rooting for her!  Although the sky is dark, right now, mine HAS to have light!  Faithfully, I'm going to be by her side, giving her what she needs, and lifting her spirits.  I know that I'm going to (someway, somehow) find the strength to support my mother and family… namely my two sisters (they are 17 and 15 ) who are suffering a lot.  Thank you again for everything, and any new news will be posted here!
         
        Thank you for being with me in this fight, I hope that you too are well!  Good luck!
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        Manubuzzi
        Participant

         

        Dian,
         
        Ok, I've just posted my message to the main bulletin board.  With the language differences and my nerves, I made a mistake.  Thank you so much for the suggestion!  Thank you for your words of support, I needed to hear them.  I know that there is hope, not much, but hope nonetheless and we are rooting for her!  Although the sky is dark, right now, mine HAS to have light!  Faithfully, I'm going to be by her side, giving her what she needs, and lifting her spirits.  I know that I'm going to (someway, somehow) find the strength to support my mother and family… namely my two sisters (they are 17 and 15 ) who are suffering a lot.  Thank you again for everything, and any new news will be posted here!
         
        Thank you for being with me in this fight, I hope that you too are well!  Good luck!
        Loading spinner
      dian in spokane
      Participant

      Manuel,

      I am so sorry that your family is facing this very difficult diagnosis. First of all, I want to tell you that you have posted this on the 'off topic' forum, which many patients here do not even look at. This board is more for talking about things unrelated to melanoma.. like..tv shows and grandkids and favorite music and such. So you will see more responses if you copy this post and put it over on the main Bulletin Board.

      Unfortunately, treatments for advanced melanoma are not that great. It sounds like your mother is likely being treated the same way she would be here in the states. Radiation, Temodar, sometimes a mix of Temodar and Thalidomide are often used for brain metastes. With your mom, treating the brain tumors is of the utmost importance, and while those other tumors can be just as deadly, the most urgent thing is to deal with those brain tumors.

      Hopefully, the remaining tumors in her brain can be dealt with with radiation and Temodar, and maybe even the liver and adrenal tumors can be surgically removied. Surgery is a great treatment for melanoma, and most of the people I know who have survived brain mets have done so with some sort of surgery.

      There are some other things out there that may be in store for your mom, like bio chemo, IL2 or even the new drug Yervoy. If you were here in the US, we would urge you to go to a doctor or center that has lots of melanoma experience and melanoma specialists.

      I'm sure everyone in the family is terrified. Speaking only from my experience as a mother, I can tell you that the best thing you can do is to spend real, quality time with your mother, and tell her how much you love her and appreciate the life she has given you. Sometimes humans put off saying things until it is too late, and that is not the thing to do now. NOW is when you must show her all of your love and strength.

      Good luck to you and yours. I hope you will come back to the board and let us know how things go with your mother.

       

      dian

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