radiation/decisions to be made
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radiation/decisions to be made

› Forums › General Melanoma Community › radiation/decisions to be made

  • Post
    • June 15, 2011 at 12:34 am
    lhaley
    Participant

    Went back for my post op visit today. Results were as expected but an added twist.  The tumor was on the ulnar nerve (funny bone). Dr White was able to remove the tumon intact, however he could not get any margins.  Technically I am NED (yeah!!!), however, now I have to make some decisions.

    Went back for my post op visit today. Results were as expected but an added twist.  The tumor was on the ulnar nerve (funny bone). Dr White was able to remove the tumon intact, however he could not get any margins.  Technically I am NED (yeah!!!), however, now I have to make some decisions.

    Radiation was "lightly" suggested. They definitely want me to talk to a radiologist at Charlotte. He will give me the odds if it will work and the odds that it will damage the nerve.  The tumor board has given me some thoughts but have told me that the decision is mine and they want me to talk to the radiologist.  On the day that I talk to him I will also talk to my mel specialist and get his thoughts. It seems that a new trial is coming to Charlotte for resected disease. The surgeon did not know the logistics and could not give me any info. He only brought this up in response to a question that I had.  All of the trials that I know of you have to have hla 201 positive, and I don't have that.  But, maybe something new is coming…..

    Had a hida scan today and found out that the gallbladder is not functioning correctly. Suggestion is to remove but because of the specific issues that I'm having they don't know if it will stop the pain issues.  This scan had been put off because of the new met and surgery in the arm. Thinking on that one. Have already talked to 3 surgeons and all 3 gave me the same thoughts. The hida scan at least proved what was believed.

    So, my question is, have any of you had radiation along a nerve area?  What type if any nerve damage did you have? Was it successful for loose cells?

    Good news was that when I actually got to read the PET from a few weeks ago it actually says that the lung nodule has shrunk and is termed "inactive"!!!!  

    Linda

    NED 1 week and hopefully will stay that way for awhile!!  It's been too long since I could post NED!

Viewing 11 reply threads
  • Replies
      • June 15, 2011 at 12:41 am
      dawn dion
      Participant

      YEA!!!!!!!!!!!!!  I am so happy for you I could cry.  I hope to reach your status one day and hold on to it just as tightly.

      Hugs and Smiles to you

      Dawn

      • June 15, 2011 at 12:41 am
      dawn dion
      Participant

      YEA!!!!!!!!!!!!!  I am so happy for you I could cry.  I hope to reach your status one day and hold on to it just as tightly.

      Hugs and Smiles to you

      Dawn

      • June 15, 2011 at 1:21 am
      vivian
      Participant

      Linda, I have been thinking about you all day.  I am so glad to hear the NED news!  I have no advice to give,  just very happy thoughts.  Yay!

      • June 15, 2011 at 1:21 am
      vivian
      Participant

      Linda, I have been thinking about you all day.  I am so glad to hear the NED news!  I have no advice to give,  just very happy thoughts.  Yay!

      • June 15, 2011 at 1:44 am
      King
      Participant

      Hi Linda,

      Great news that the tumor was removed intact but now more decisions.  Hmm…..   I attended the teleconference yesterday sponsored by the MRF.  I think I heard (and believe me, I could be wrong) that there is a new trial for Stage IV NED using Ipi vs GM-CSF.  Keep us posted.  You're in my thoughts and prayers.

       

      Stay Strong
      King

      Stage IV  7/05 Liver mets

        • June 15, 2011 at 1:47 am
        lhaley
        Participant

        I wonder if I'd be allowed in it since I've already done the GM-CSF in a trial?  I need to listen to the teleconference.  I knew today would be long so I took yesterday off and spent it with my quilting buddies!! 

        • June 15, 2011 at 1:57 am
        King
        Participant

        Good for you to spend today with your quilting buddies!  Maybe someone else will chime in that was on the call.  Honestly, I could be wrong but I think I heard that.  Most of the discussion was about treatment options for those who are BRAF positive and the FDA approval of Ipi.  I think it was getting near the end of the hour that GM-CSF vs Ipi might have been mentioned along with limited options for now for those who are not BRAF positive.

         

        I, too, did GM-CSF in a Phase II trial in 2005-2006 after my liver resection (NED Stage IV).  Recently, the results of that trial were published and the GM-CSF showed no benefit so I was surprised when I heard it mentioned at the teleconference (at least, I think I heard it…LOL)

         

        Stay Strong
        King

        • June 15, 2011 at 4:55 am
        LynnLuc
        Participant

        Hey Linda, Can you do Ipi….I forgot!

        I did radiation right through the middle of my chest…I think it helped kill off at least 1/3 or more of the melanoma they were aiming at…the radiation onc said sometimes they radiate melanoma and it turns to dust and other times it doesn't happen. If I had to do it again I think I would have opted for radiation after surgery instead of before.

        In 2009 Mayo offered me the Leukine injections 14 days on and 14 days off  for eternity…I rejected it (fear of sticking myself with needles was one reason) and from what I read I didn't think it would benefit me. It was about  two months after surgery my Mayo doc said I probably made a wise decision because patients with melanoma that has spread to lymph nodes was shown not to benefit from it and it didn't prolong life in studies..

        • June 15, 2011 at 4:55 am
        LynnLuc
        Participant

        Hey Linda, Can you do Ipi….I forgot!

        I did radiation right through the middle of my chest…I think it helped kill off at least 1/3 or more of the melanoma they were aiming at…the radiation onc said sometimes they radiate melanoma and it turns to dust and other times it doesn't happen. If I had to do it again I think I would have opted for radiation after surgery instead of before.

        In 2009 Mayo offered me the Leukine injections 14 days on and 14 days off  for eternity…I rejected it (fear of sticking myself with needles was one reason) and from what I read I didn't think it would benefit me. It was about  two months after surgery my Mayo doc said I probably made a wise decision because patients with melanoma that has spread to lymph nodes was shown not to benefit from it and it didn't prolong life in studies..

        • June 15, 2011 at 1:57 am
        King
        Participant

        Good for you to spend today with your quilting buddies!  Maybe someone else will chime in that was on the call.  Honestly, I could be wrong but I think I heard that.  Most of the discussion was about treatment options for those who are BRAF positive and the FDA approval of Ipi.  I think it was getting near the end of the hour that GM-CSF vs Ipi might have been mentioned along with limited options for now for those who are not BRAF positive.

         

        I, too, did GM-CSF in a Phase II trial in 2005-2006 after my liver resection (NED Stage IV).  Recently, the results of that trial were published and the GM-CSF showed no benefit so I was surprised when I heard it mentioned at the teleconference (at least, I think I heard it…LOL)

         

        Stay Strong
        King

        • June 15, 2011 at 1:47 am
        lhaley
        Participant

        I wonder if I'd be allowed in it since I've already done the GM-CSF in a trial?  I need to listen to the teleconference.  I knew today would be long so I took yesterday off and spent it with my quilting buddies!! 

      • June 15, 2011 at 1:44 am
      King
      Participant

      Hi Linda,

      Great news that the tumor was removed intact but now more decisions.  Hmm…..   I attended the teleconference yesterday sponsored by the MRF.  I think I heard (and believe me, I could be wrong) that there is a new trial for Stage IV NED using Ipi vs GM-CSF.  Keep us posted.  You're in my thoughts and prayers.

       

      Stay Strong
      King

      Stage IV  7/05 Liver mets

      • June 15, 2011 at 9:38 am
      JerryfromFauq
      Participant

      Linda, an option to check out regardiing radiation would also be proton radiation (offered in Jacksonville).  It is the most accurate without doing damage  surrounding organs and tissues.  Hope to talk soon.   Insurance doesn't like to pay the cost of the proton ratiation, but the likelhood to a close nerve or organ can be a factor.

      • June 15, 2011 at 9:38 am
      JerryfromFauq
      Participant

      Linda, an option to check out regardiing radiation would also be proton radiation (offered in Jacksonville).  It is the most accurate without doing damage  surrounding organs and tissues.  Hope to talk soon.   Insurance doesn't like to pay the cost of the proton ratiation, but the likelhood to a close nerve or organ can be a factor.

      • June 15, 2011 at 10:57 am
      FormerCaregiver
      Participant

      Linda, congratulations on achieving NED!!

      I wonder about the efficacy of any radiation treatment to the area where the tumour was
      removed. Of course, loose cells are a concern but melanoma has some resistance to
      radiation. Certainly, there is the risk of nerve damage and it might do more harm than
      good.

      Therefore, I feel that avoiding radiotherapy to the area would probably be the best
      decision at the moment.

      Best wishes

      Frank from Australia

      • June 15, 2011 at 10:57 am
      FormerCaregiver
      Participant

      Linda, congratulations on achieving NED!!

      I wonder about the efficacy of any radiation treatment to the area where the tumour was
      removed. Of course, loose cells are a concern but melanoma has some resistance to
      radiation. Certainly, there is the risk of nerve damage and it might do more harm than
      good.

      Therefore, I feel that avoiding radiotherapy to the area would probably be the best
      decision at the moment.

      Best wishes

      Frank from Australia

      • June 15, 2011 at 12:26 pm
      nicoli
      Participant

      A study published in November 2009 influenced me to have radiation after my last surgery. It showed that radiation after surgery decreases your chances of recurrence.

      If you research it online, you should be able to find tha article pretty easily. It usually comes up near the top.

      Nicki, Stage 3b

      • June 15, 2011 at 12:26 pm
      nicoli
      Participant

      A study published in November 2009 influenced me to have radiation after my last surgery. It showed that radiation after surgery decreases your chances of recurrence.

      If you research it online, you should be able to find tha article pretty easily. It usually comes up near the top.

      Nicki, Stage 3b

        • June 15, 2011 at 1:17 pm
        JerryfromFauq
        Participant

        My surgeon wasn't wild about radiation for melanoma, but referred me to a couple of radiolgy centers.  They wanted to do extesive radiation to my whole abdomen.  After talking to many people who either had the radiation to a large area and else  had family that did, hear ONLY tales of agony caused by repeated operations to correct problems to the intestines and abdomin that I refused.  That was over 4 years ago.

        • June 15, 2011 at 1:17 pm
        JerryfromFauq
        Participant

        My surgeon wasn't wild about radiation for melanoma, but referred me to a couple of radiolgy centers.  They wanted to do extesive radiation to my whole abdomen.  After talking to many people who either had the radiation to a large area and else  had family that did, hear ONLY tales of agony caused by repeated operations to correct problems to the intestines and abdomin that I refused.  That was over 4 years ago.

        • June 15, 2011 at 1:35 pm
        lhaley
        Participant

        Nicki,

        I did find that article and it sounds like it basically improves the chance of  no recurrance in that area by 40% which in melanoma speak is quite a bit!  However, I also read the side effects of radiation and nerves.  I think I will ask the radiologist about Jerry's comment on proton therapy.

        Jerry,

        I tried once to catch you on the phone and didn't get you. I'll try again ….been sick (cold) and never called back.

        Linda

        • June 15, 2011 at 1:35 pm
        lhaley
        Participant

        Nicki,

        I did find that article and it sounds like it basically improves the chance of  no recurrance in that area by 40% which in melanoma speak is quite a bit!  However, I also read the side effects of radiation and nerves.  I think I will ask the radiologist about Jerry's comment on proton therapy.

        Jerry,

        I tried once to catch you on the phone and didn't get you. I'll try again ….been sick (cold) and never called back.

        Linda

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