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Sad…..did I give wrong info ?

Forums General Melanoma Community Sad…..did I give wrong info ?

  • Post
    Snickers60
    Participant

      Wayne and I know NO ONE in our area with Melanoma !   I was in Beauty Shop last week and meet "2 WOMEN" whose husbands are stage 4.  I almost fell out.   

      One was BRAF positive and has a year NED under his belt.   The other was sent home 3 weeks ago after YERVOY to get his affairs in order.    She said he feels great and is not in pain or SICKLY.   

      Wayne and I know NO ONE in our area with Melanoma !   I was in Beauty Shop last week and meet "2 WOMEN" whose husbands are stage 4.  I almost fell out.   

      One was BRAF positive and has a year NED under his belt.   The other was sent home 3 weeks ago after YERVOY to get his affairs in order.    She said he feels great and is not in pain or SICKLY.   

      I told her to get those scans, records, etc. together and have her DOC get him to MDA IMMEDIATELY.     The Doc had told him there was NOTHING else for him.   I SAID:   there's always something else.   

      Was I wrong ?    I mean there are still trials on ANTI- PDI and always something to TRY right ?     He has nine spots…..it started with a melanoma on his head.     He is 75 years old.  

      I FELT SOOOO SORRY for her.   There sat me and the other lady with husbands NED for a year and Wayne at 7 months now.    This stuff is SOOO IFFY ! SO STRANGE, but I did not want to leave her with NO HOPE !    Told her these Docs around here will let him die and even if there's nothing else to do at all, she will have the peace that they did EVERYTHING humanely possible to get help.  

      What a sad and at the same time – ENCOURAGING encounter.     Sad with one, encouraging with the other.   SOOO sad for the one woman who is preparing for her hubby to die.  

      HATE MELANOMA – JUST HATE IT !!!!!!!!!

      BTWAY – Wayne is on his way to MDA NOW !    I was unable to go because of knee surgery, but praying hubby gets good report.   This is kinda just a check back – no big test !!!    

      Nancy (Devoted wife of 3 X Warrior Wayne)     

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        Janner
        Participant

          Anti-PD1 stuff is in clinical trials so not all can get access to it.  Other medical conditions may eliminate him as well as simply age.  Some trials have upper limits on age.  Age and health status can also limit access to approved therapies.  I'm not sure I would have said to go to MDA only – there are other facilities that might be closer and still offer other options.  It is certainly valid to suggest getting another opinion, however.  The reality is some institutions offer more options than others.  That is true mainly for clinical trials but also can apply to some approved therapies.  There are times when there are really no other options to try.  But since you know nothing about the real condition of this person, suggesting a second opinion is definitely a valid opinion.

          Janner
          Participant

            Anti-PD1 stuff is in clinical trials so not all can get access to it.  Other medical conditions may eliminate him as well as simply age.  Some trials have upper limits on age.  Age and health status can also limit access to approved therapies.  I'm not sure I would have said to go to MDA only – there are other facilities that might be closer and still offer other options.  It is certainly valid to suggest getting another opinion, however.  The reality is some institutions offer more options than others.  That is true mainly for clinical trials but also can apply to some approved therapies.  There are times when there are really no other options to try.  But since you know nothing about the real condition of this person, suggesting a second opinion is definitely a valid opinion.

            Janner
            Participant

              Anti-PD1 stuff is in clinical trials so not all can get access to it.  Other medical conditions may eliminate him as well as simply age.  Some trials have upper limits on age.  Age and health status can also limit access to approved therapies.  I'm not sure I would have said to go to MDA only – there are other facilities that might be closer and still offer other options.  It is certainly valid to suggest getting another opinion, however.  The reality is some institutions offer more options than others.  That is true mainly for clinical trials but also can apply to some approved therapies.  There are times when there are really no other options to try.  But since you know nothing about the real condition of this person, suggesting a second opinion is definitely a valid opinion.

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