Bad News
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Bad News

› Forums › General Melanoma Community › Bad News

  • Post
    • August 25, 2016 at 5:29 pm
    vickiaa0529
    Participant

    Stage 4 

    brain met at MDA

    scared to death

Viewing 29 reply threads
  • Replies
      • August 25, 2016 at 6:41 pm
      youngann
      Participant

      Don't know what to say.

      ::Hugs::

      • August 25, 2016 at 6:41 pm
      youngann
      Participant

      Don't know what to say.

      ::Hugs::

      • August 25, 2016 at 6:41 pm
      youngann
      Participant

      Don't know what to say.

      ::Hugs::

      • August 25, 2016 at 7:13 pm
      casagrayson
      Participant

      I'm really sorry to hear that, Vicki.  Hopefully you'll get a plan of attack from the doctors soon and get that taken care of very quickly!  

      • August 25, 2016 at 7:13 pm
      casagrayson
      Participant

      I'm really sorry to hear that, Vicki.  Hopefully you'll get a plan of attack from the doctors soon and get that taken care of very quickly!  

      • August 25, 2016 at 7:13 pm
      casagrayson
      Participant

      I'm really sorry to hear that, Vicki.  Hopefully you'll get a plan of attack from the doctors soon and get that taken care of very quickly!  

      • August 25, 2016 at 7:20 pm
      jvictoria
      Participant

      Have Faith… Get a plan asap

      • August 25, 2016 at 7:20 pm
      jvictoria
      Participant

      Have Faith… Get a plan asap

      • August 25, 2016 at 7:20 pm
      jvictoria
      Participant

      Have Faith… Get a plan asap

      • August 25, 2016 at 7:40 pm
      Bubbles
      Participant

      Hey Vicki!  Just saw your note on blog.  So very sorry, sweetie.  But, as I said there….you can do this.  It is not fun.  But you can do it.  Make sure you are being seen by a melanoma specialist.  Zap the sucker and follow up rapidly with the systemic treatment you decide is best for you….would be my approach.  Yell, scream…let us know what we can do.  Hang in there.  You can do this!!!  love, c

      • August 25, 2016 at 7:40 pm
      Bubbles
      Participant

      Hey Vicki!  Just saw your note on blog.  So very sorry, sweetie.  But, as I said there….you can do this.  It is not fun.  But you can do it.  Make sure you are being seen by a melanoma specialist.  Zap the sucker and follow up rapidly with the systemic treatment you decide is best for you….would be my approach.  Yell, scream…let us know what we can do.  Hang in there.  You can do this!!!  love, c

        • August 25, 2016 at 8:00 pm
        Bubbles
        Participant

        OK.  Got my brain in gear.  You are in Seattle, Stage IIIB, after complete lymph node dissection of groin.  Were considering ipi.  Had clear scans.  But were still looking for therapy and were going to have eval at MD Anderson.  Is that close?  Did this show up on routine scans at MDA?  Were you having symptoms?  So sorry.  But, again….you can do this.  Let us know what they are recommending.  There are lots of smart peeps here.  Hang in there!  C

        • August 25, 2016 at 8:00 pm
        Bubbles
        Participant

        OK.  Got my brain in gear.  You are in Seattle, Stage IIIB, after complete lymph node dissection of groin.  Were considering ipi.  Had clear scans.  But were still looking for therapy and were going to have eval at MD Anderson.  Is that close?  Did this show up on routine scans at MDA?  Were you having symptoms?  So sorry.  But, again….you can do this.  Let us know what they are recommending.  There are lots of smart peeps here.  Hang in there!  C

        • August 25, 2016 at 8:16 pm
        vickiaa0529
        Participant

        Yep that's me they never did a brain scan until yesterday 

        they are recommending watch and wait after this

        • August 25, 2016 at 8:16 pm
        vickiaa0529
        Participant

        Yep that's me they never did a brain scan until yesterday 

        they are recommending watch and wait after this

        • August 25, 2016 at 8:41 pm
        vickiaa0529
        Participant

        No symptoms at all

        they said this is not common 

         

        • August 25, 2016 at 8:41 pm
        vickiaa0529
        Participant

        No symptoms at all

        they said this is not common 

         

        • August 25, 2016 at 8:41 pm
        vickiaa0529
        Participant

        No symptoms at all

        they said this is not common 

         

        • August 25, 2016 at 9:55 pm
        vickiaa0529
        Participant

        No symptoms at all

        they said this is not common 

         

        • August 25, 2016 at 9:55 pm
        vickiaa0529
        Participant

        No symptoms at all

        they said this is not common 

         

        • August 26, 2016 at 1:08 am
        ed williams
        Participant

        Much better to catch things early, before symptoms!!! Early hopefully means small and small usually has better results with Stereotatic radiation. Best Wishes!!!Ed

        • August 26, 2016 at 1:08 am
        ed williams
        Participant

        Much better to catch things early, before symptoms!!! Early hopefully means small and small usually has better results with Stereotatic radiation. Best Wishes!!!Ed

        • August 26, 2016 at 1:08 am
        ed williams
        Participant

        Much better to catch things early, before symptoms!!! Early hopefully means small and small usually has better results with Stereotatic radiation. Best Wishes!!!Ed

        • August 26, 2016 at 1:29 am
        vickiaa0529
        Participant

        It is small. Do you know how bad the procedure is?

        • August 26, 2016 at 1:29 am
        vickiaa0529
        Participant

        It is small. Do you know how bad the procedure is?

        • August 26, 2016 at 1:29 am
        vickiaa0529
        Participant

        It is small. Do you know how bad the procedure is?

        • August 26, 2016 at 12:10 pm
        ed williams
        Participant

        I had cyberknife stereotatic surgery almost three years ago to treat three small tumors about 4 to 5mm in size. It took one hour for the treatment and that was that. We waiting two months to do a follow up MRI scan and the treatment worked great. I had no side effects other than the fact that I keep forgetting to do the dishes!!!! Cyberknife humor!!!Best Wishes!!!Ed

        • August 26, 2016 at 12:10 pm
        ed williams
        Participant

        I had cyberknife stereotatic surgery almost three years ago to treat three small tumors about 4 to 5mm in size. It took one hour for the treatment and that was that. We waiting two months to do a follow up MRI scan and the treatment worked great. I had no side effects other than the fact that I keep forgetting to do the dishes!!!! Cyberknife humor!!!Best Wishes!!!Ed

        • August 26, 2016 at 12:10 pm
        ed williams
        Participant

        I had cyberknife stereotatic surgery almost three years ago to treat three small tumors about 4 to 5mm in size. It took one hour for the treatment and that was that. We waiting two months to do a follow up MRI scan and the treatment worked great. I had no side effects other than the fact that I keep forgetting to do the dishes!!!! Cyberknife humor!!!Best Wishes!!!Ed

        • August 26, 2016 at 2:18 pm
        vickiaa0529
        Participant

        Thanks Ed

        We are meeting with the neurosurgeon this am and fighting to get in with the Radiolgist Team as well. I'm so glad I came to Houston I feel confident I'm in the best place but still scared to death

         

        • August 26, 2016 at 2:18 pm
        vickiaa0529
        Participant

        Thanks Ed

        We are meeting with the neurosurgeon this am and fighting to get in with the Radiolgist Team as well. I'm so glad I came to Houston I feel confident I'm in the best place but still scared to death

         

        • August 26, 2016 at 2:18 pm
        vickiaa0529
        Participant

        Thanks Ed

        We are meeting with the neurosurgeon this am and fighting to get in with the Radiolgist Team as well. I'm so glad I came to Houston I feel confident I'm in the best place but still scared to death

         

        • August 25, 2016 at 9:55 pm
        vickiaa0529
        Participant

        No symptoms at all

        they said this is not common 

         

        • August 25, 2016 at 8:16 pm
        vickiaa0529
        Participant

        Yep that's me they never did a brain scan until yesterday 

        they are recommending watch and wait after this

        • August 25, 2016 at 8:00 pm
        Bubbles
        Participant

        OK.  Got my brain in gear.  You are in Seattle, Stage IIIB, after complete lymph node dissection of groin.  Were considering ipi.  Had clear scans.  But were still looking for therapy and were going to have eval at MD Anderson.  Is that close?  Did this show up on routine scans at MDA?  Were you having symptoms?  So sorry.  But, again….you can do this.  Let us know what they are recommending.  There are lots of smart peeps here.  Hang in there!  C

      • August 25, 2016 at 7:40 pm
      Bubbles
      Participant

      Hey Vicki!  Just saw your note on blog.  So very sorry, sweetie.  But, as I said there….you can do this.  It is not fun.  But you can do it.  Make sure you are being seen by a melanoma specialist.  Zap the sucker and follow up rapidly with the systemic treatment you decide is best for you….would be my approach.  Yell, scream…let us know what we can do.  Hang in there.  You can do this!!!  love, c

      • August 25, 2016 at 8:13 pm
      jennunicorn
      Participant

      So sorry Vicki! Definitely NOT what you wanted to hear from MDA… you'll get that sucker taken care of, as you know, there's tons of support here and lots of good info for you!

      Sending you lots of hugs!

      • August 25, 2016 at 8:13 pm
      jennunicorn
      Participant

      So sorry Vicki! Definitely NOT what you wanted to hear from MDA… you'll get that sucker taken care of, as you know, there's tons of support here and lots of good info for you!

      Sending you lots of hugs!

        • August 25, 2016 at 8:23 pm
        vickiaa0529
        Participant

        Thanks Jen btw they said the lung nodules are nothing

        • August 25, 2016 at 8:23 pm
        vickiaa0529
        Participant

        Thanks Jen btw they said the lung nodules are nothing

        • August 25, 2016 at 8:23 pm
        vickiaa0529
        Participant

        Thanks Jen btw they said the lung nodules are nothing

      • August 25, 2016 at 8:13 pm
      jennunicorn
      Participant

      So sorry Vicki! Definitely NOT what you wanted to hear from MDA… you'll get that sucker taken care of, as you know, there's tons of support here and lots of good info for you!

      Sending you lots of hugs!

      • August 25, 2016 at 8:56 pm
      Bubbles
      Participant

      Ok.  Zap it into oblivion!!!  I never had signs or symptoms due to my brain mets either.  Glad the lung nodules are nothing.  That's all good.  But, I wouldn't be happy with watch and wait myself.  And…believe me….I've been in NED melanoma never land.  Which is not bad…and it is where you will be as soon as you get this zapped.  But, I would really want systemic therapy.  Tons of articles on my blog of the benefit of systemic therapy on the heels of radiation for brain mets as well as other yuck.  So….you think about what YOU want and we will start that search and research if you like.  Hang in there.  SRS or gamma knife is yucky….but totally doable.  Halo installation and removal was the worst part for me…but lots of places use the mask these days and that works great.  So sorry you are having to deal with this.  But….you will move past it and be able to look back on it as just one more crazy thing (like I wrote to Josh) before you know it!  Ever yours, celeste

      • August 25, 2016 at 8:56 pm
      Bubbles
      Participant

      Ok.  Zap it into oblivion!!!  I never had signs or symptoms due to my brain mets either.  Glad the lung nodules are nothing.  That's all good.  But, I wouldn't be happy with watch and wait myself.  And…believe me….I've been in NED melanoma never land.  Which is not bad…and it is where you will be as soon as you get this zapped.  But, I would really want systemic therapy.  Tons of articles on my blog of the benefit of systemic therapy on the heels of radiation for brain mets as well as other yuck.  So….you think about what YOU want and we will start that search and research if you like.  Hang in there.  SRS or gamma knife is yucky….but totally doable.  Halo installation and removal was the worst part for me…but lots of places use the mask these days and that works great.  So sorry you are having to deal with this.  But….you will move past it and be able to look back on it as just one more crazy thing (like I wrote to Josh) before you know it!  Ever yours, celeste

      • August 25, 2016 at 8:56 pm
      Bubbles
      Participant

      Ok.  Zap it into oblivion!!!  I never had signs or symptoms due to my brain mets either.  Glad the lung nodules are nothing.  That's all good.  But, I wouldn't be happy with watch and wait myself.  And…believe me….I've been in NED melanoma never land.  Which is not bad…and it is where you will be as soon as you get this zapped.  But, I would really want systemic therapy.  Tons of articles on my blog of the benefit of systemic therapy on the heels of radiation for brain mets as well as other yuck.  So….you think about what YOU want and we will start that search and research if you like.  Hang in there.  SRS or gamma knife is yucky….but totally doable.  Halo installation and removal was the worst part for me…but lots of places use the mask these days and that works great.  So sorry you are having to deal with this.  But….you will move past it and be able to look back on it as just one more crazy thing (like I wrote to Josh) before you know it!  Ever yours, celeste

      • August 26, 2016 at 1:12 am
      Corinne
      Participant

      Vicki, My husband (the patient) and I are so sorry to hear of this change. We live in Houston so, Randy is getting his treatment here at MDA. We are curious to know which doc gave the watch and wait opinion. My husband is stage 3c. His first oncologist there was Dr. Diab. He wanted to watch and wait based on the fact that  Randy has an autoimmune disease (colitis). We wanted more aggressive treatment and actually requested a change to Dr. Amaria. Randy has just finished a year's clinical trial with the combo targeted therapy dabrafenib/trametinib and is NED, praise God!

      i think Celeste is a special agent from the Lord. Not only does she encourage others, she researches for and checks routinely on others. Thank-you C. For all you do! I totally agree with her on the systemic philosophy.

      We will keep you in our prayers. 

      Corinne and Randy

      • August 26, 2016 at 1:12 am
      Corinne
      Participant

      Vicki, My husband (the patient) and I are so sorry to hear of this change. We live in Houston so, Randy is getting his treatment here at MDA. We are curious to know which doc gave the watch and wait opinion. My husband is stage 3c. His first oncologist there was Dr. Diab. He wanted to watch and wait based on the fact that  Randy has an autoimmune disease (colitis). We wanted more aggressive treatment and actually requested a change to Dr. Amaria. Randy has just finished a year's clinical trial with the combo targeted therapy dabrafenib/trametinib and is NED, praise God!

      i think Celeste is a special agent from the Lord. Not only does she encourage others, she researches for and checks routinely on others. Thank-you C. For all you do! I totally agree with her on the systemic philosophy.

      We will keep you in our prayers. 

      Corinne and Randy

      • August 26, 2016 at 1:12 am
      Corinne
      Participant

      Vicki, My husband (the patient) and I are so sorry to hear of this change. We live in Houston so, Randy is getting his treatment here at MDA. We are curious to know which doc gave the watch and wait opinion. My husband is stage 3c. His first oncologist there was Dr. Diab. He wanted to watch and wait based on the fact that  Randy has an autoimmune disease (colitis). We wanted more aggressive treatment and actually requested a change to Dr. Amaria. Randy has just finished a year's clinical trial with the combo targeted therapy dabrafenib/trametinib and is NED, praise God!

      i think Celeste is a special agent from the Lord. Not only does she encourage others, she researches for and checks routinely on others. Thank-you C. For all you do! I totally agree with her on the systemic philosophy.

      We will keep you in our prayers. 

      Corinne and Randy

        • August 26, 2016 at 1:16 am
        Corinne
        Participant

        One more thing, please pray for us too. Randy has his MRI and CAT scan Sat. We will get the results on Sept. 1st which is our 43rd wedding anniversary. Scansity is no fun:-(

        • August 26, 2016 at 1:16 am
        Corinne
        Participant

        One more thing, please pray for us too. Randy has his MRI and CAT scan Sat. We will get the results on Sept. 1st which is our 43rd wedding anniversary. Scansity is no fun:-(

        • August 26, 2016 at 1:16 am
        Corinne
        Participant

        One more thing, please pray for us too. Randy has his MRI and CAT scan Sat. We will get the results on Sept. 1st which is our 43rd wedding anniversary. Scansity is no fun:-(

        • August 26, 2016 at 2:59 am
        vickiaa0529
        Participant

        Hi

        Dr Armia. The reasoning for watch and wait was I could devolope a tolerance to the BRAF drugs and save the combo for when I need it 

        I'm so glad we are here 

        I love these Docs 

        You are in my prayers and yes Celeste is an angel

        • August 26, 2016 at 2:59 am
        vickiaa0529
        Participant

        Hi

        Dr Armia. The reasoning for watch and wait was I could devolope a tolerance to the BRAF drugs and save the combo for when I need it 

        I'm so glad we are here 

        I love these Docs 

        You are in my prayers and yes Celeste is an angel

        • August 26, 2016 at 2:59 am
        vickiaa0529
        Participant

        Hi

        Dr Armia. The reasoning for watch and wait was I could devolope a tolerance to the BRAF drugs and save the combo for when I need it 

        I'm so glad we are here 

        I love these Docs 

        You are in my prayers and yes Celeste is an angel

        • August 26, 2016 at 3:52 am
        MC1R
        Participant

        We have a very similar story.  I was stage 3b with a CLND Of my right groin.  Clean scans for 2 years. Then on a regularly scheduled scan/MRI they found 2 brain mets.  I go to MDA also.  I had Gamma knife surgery there and started with Tafinlar/Mekinist combo.  6 months later, one met is completely resolved and the bigger one is 75% resolved. They want to keep me on the combo for a full year.  I know this is precision medicine and each patient is different but I just find it interesting the varied treatment recommendations at even the same facilities.  

        My gamma knife experience there was as good as it could have been. The halo is freaky but everyone involved was awesome and gave me the utmost confidence that it was going to be ok. 

        Good luck to you.  It's doable. 

         

        • August 26, 2016 at 3:52 am
        MC1R
        Participant

        We have a very similar story.  I was stage 3b with a CLND Of my right groin.  Clean scans for 2 years. Then on a regularly scheduled scan/MRI they found 2 brain mets.  I go to MDA also.  I had Gamma knife surgery there and started with Tafinlar/Mekinist combo.  6 months later, one met is completely resolved and the bigger one is 75% resolved. They want to keep me on the combo for a full year.  I know this is precision medicine and each patient is different but I just find it interesting the varied treatment recommendations at even the same facilities.  

        My gamma knife experience there was as good as it could have been. The halo is freaky but everyone involved was awesome and gave me the utmost confidence that it was going to be ok. 

        Good luck to you.  It's doable. 

         

        • August 26, 2016 at 3:52 am
        MC1R
        Participant

        We have a very similar story.  I was stage 3b with a CLND Of my right groin.  Clean scans for 2 years. Then on a regularly scheduled scan/MRI they found 2 brain mets.  I go to MDA also.  I had Gamma knife surgery there and started with Tafinlar/Mekinist combo.  6 months later, one met is completely resolved and the bigger one is 75% resolved. They want to keep me on the combo for a full year.  I know this is precision medicine and each patient is different but I just find it interesting the varied treatment recommendations at even the same facilities.  

        My gamma knife experience there was as good as it could have been. The halo is freaky but everyone involved was awesome and gave me the utmost confidence that it was going to be ok. 

        Good luck to you.  It's doable. 

         

        • August 26, 2016 at 2:02 pm
        vickiaa0529
        Participant

        Thanks

        i think the reason they don't have me on the combo is they want to wait 6 weeks for the next scan then if it's gone I can wait 2 months for the next rounds of scans and if their is a new met then start a combo 

        thanks for the note 

        • August 26, 2016 at 2:02 pm
        vickiaa0529
        Participant

        Thanks

        i think the reason they don't have me on the combo is they want to wait 6 weeks for the next scan then if it's gone I can wait 2 months for the next rounds of scans and if their is a new met then start a combo 

        thanks for the note 

        • August 26, 2016 at 2:02 pm
        vickiaa0529
        Participant

        Thanks

        i think the reason they don't have me on the combo is they want to wait 6 weeks for the next scan then if it's gone I can wait 2 months for the next rounds of scans and if their is a new met then start a combo 

        thanks for the note 

      • August 26, 2016 at 3:35 pm
      MoiraM
      Participant

      Hi Vicki, I have not been able to stop thinking about your post since I first read it. I hope you feel more positive now that people who have had brain mets treated successfully have posted.

      You have a perfect right to be scared but please try to fight it. Days polluted with fear are less good than they would have been without that fear.

      I feel silly posting this, because it make me seem like a complete SciFi geek but I am going to:

      "I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when my fear is gone I will turn and face fear's path, and only I will remain."

      • August 26, 2016 at 3:35 pm
      MoiraM
      Participant

      Hi Vicki, I have not been able to stop thinking about your post since I first read it. I hope you feel more positive now that people who have had brain mets treated successfully have posted.

      You have a perfect right to be scared but please try to fight it. Days polluted with fear are less good than they would have been without that fear.

      I feel silly posting this, because it make me seem like a complete SciFi geek but I am going to:

      "I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when my fear is gone I will turn and face fear's path, and only I will remain."

      • August 26, 2016 at 3:35 pm
      MoiraM
      Participant

      Hi Vicki, I have not been able to stop thinking about your post since I first read it. I hope you feel more positive now that people who have had brain mets treated successfully have posted.

      You have a perfect right to be scared but please try to fight it. Days polluted with fear are less good than they would have been without that fear.

      I feel silly posting this, because it make me seem like a complete SciFi geek but I am going to:

      "I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when my fear is gone I will turn and face fear's path, and only I will remain."

        • August 26, 2016 at 10:26 pm
        vickiaa0529
        Participant

        Thanks! I love the quote 

        Positive thinking has been a weakness of mine since this journey has started but I plan on turning it around

         

        • August 26, 2016 at 10:26 pm
        vickiaa0529
        Participant

        Thanks! I love the quote 

        Positive thinking has been a weakness of mine since this journey has started but I plan on turning it around

         

        • August 26, 2016 at 10:26 pm
        vickiaa0529
        Participant

        Thanks! I love the quote 

        Positive thinking has been a weakness of mine since this journey has started but I plan on turning it around

         

      • August 27, 2016 at 2:02 pm
      Maria C
      Participant

      Vicki, hang in there, brain mets can do a number on you psychologically but the SRS procedure is really not that painful (especially cyberknife, as I've done both) and very effective for most, especially when you catch things early. Just be alert to any changes in your behavior/symptoms months down the road and call every single one in to your doctor, in case a pesky tumor recurs. Ask as many questions of your doctors as you need until you feel at ease, then believe in them and in your own will to heal. You've got this!!

        • August 28, 2016 at 12:44 am
        vickiaa0529
        Participant

        Thanks!

        How long ago was your gamma knife and how are you doing now? Did you have any side effects?

        • August 28, 2016 at 12:44 am
        vickiaa0529
        Participant

        Thanks!

        How long ago was your gamma knife and how are you doing now? Did you have any side effects?

        • August 30, 2016 at 5:08 am
        Maria C
        Participant

        Vicki, sorry for the delay in responding, I tried to look this up in my files but I don't have the full set of records handy. I was diagnosed with mucosal melanoma in June 2015, then the 1st MRI on brain in mid-September a few months later led to the first gamma knife, then 2 months after that the second gamma knife, for a total of 5 original mets. February scans were stable and then I started getting symptoms such as dizziness after getting out of the car, my right foot not functioning properly, indicating either more mets or recurrences. In my case it turned out to be recurrences. When a craniotomy was suggested I got a second opinion which led to a change in my medical team and my first craniotomy was scheduled a full year after diagnosis (June 2016). Follow-up MRI led to a second craniotomy a month later (July), followed in mid-August with 5-days of clean-up cyberknife radiation. The good news is I have felt no pain with any of the recent procedures and am back at work & life though fatigue & insomnia are slowing me down a bit.

        Have you been scheduled for your radiation yet? Please keep us posted!

         

        • August 30, 2016 at 5:08 am
        Maria C
        Participant

        Vicki, sorry for the delay in responding, I tried to look this up in my files but I don't have the full set of records handy. I was diagnosed with mucosal melanoma in June 2015, then the 1st MRI on brain in mid-September a few months later led to the first gamma knife, then 2 months after that the second gamma knife, for a total of 5 original mets. February scans were stable and then I started getting symptoms such as dizziness after getting out of the car, my right foot not functioning properly, indicating either more mets or recurrences. In my case it turned out to be recurrences. When a craniotomy was suggested I got a second opinion which led to a change in my medical team and my first craniotomy was scheduled a full year after diagnosis (June 2016). Follow-up MRI led to a second craniotomy a month later (July), followed in mid-August with 5-days of clean-up cyberknife radiation. The good news is I have felt no pain with any of the recent procedures and am back at work & life though fatigue & insomnia are slowing me down a bit.

        Have you been scheduled for your radiation yet? Please keep us posted!

         

        • August 30, 2016 at 5:08 am
        Maria C
        Participant

        Vicki, sorry for the delay in responding, I tried to look this up in my files but I don't have the full set of records handy. I was diagnosed with mucosal melanoma in June 2015, then the 1st MRI on brain in mid-September a few months later led to the first gamma knife, then 2 months after that the second gamma knife, for a total of 5 original mets. February scans were stable and then I started getting symptoms such as dizziness after getting out of the car, my right foot not functioning properly, indicating either more mets or recurrences. In my case it turned out to be recurrences. When a craniotomy was suggested I got a second opinion which led to a change in my medical team and my first craniotomy was scheduled a full year after diagnosis (June 2016). Follow-up MRI led to a second craniotomy a month later (July), followed in mid-August with 5-days of clean-up cyberknife radiation. The good news is I have felt no pain with any of the recent procedures and am back at work & life though fatigue & insomnia are slowing me down a bit.

        Have you been scheduled for your radiation yet? Please keep us posted!

         

        • August 31, 2016 at 7:03 pm
        vickiaa0529
        Participant

        Thanks. I am glad they caught this early. I am scheduled for the 15th. Not looking forward to it but I want it gone gone. The worse part is leaving of fear of recurrence.

         

        Thanks for response and support

         

        • August 31, 2016 at 7:03 pm
        vickiaa0529
        Participant

        Thanks. I am glad they caught this early. I am scheduled for the 15th. Not looking forward to it but I want it gone gone. The worse part is leaving of fear of recurrence.

         

        Thanks for response and support

         

        • August 31, 2016 at 7:03 pm
        vickiaa0529
        Participant

        Thanks. I am glad they caught this early. I am scheduled for the 15th. Not looking forward to it but I want it gone gone. The worse part is leaving of fear of recurrence.

         

        Thanks for response and support

         

        • August 28, 2016 at 12:44 am
        vickiaa0529
        Participant

        Thanks!

        How long ago was your gamma knife and how are you doing now? Did you have any side effects?

      • August 27, 2016 at 2:02 pm
      Maria C
      Participant

      Vicki, hang in there, brain mets can do a number on you psychologically but the SRS procedure is really not that painful (especially cyberknife, as I've done both) and very effective for most, especially when you catch things early. Just be alert to any changes in your behavior/symptoms months down the road and call every single one in to your doctor, in case a pesky tumor recurs. Ask as many questions of your doctors as you need until you feel at ease, then believe in them and in your own will to heal. You've got this!!

      • August 27, 2016 at 2:02 pm
      Maria C
      Participant

      Vicki, hang in there, brain mets can do a number on you psychologically but the SRS procedure is really not that painful (especially cyberknife, as I've done both) and very effective for most, especially when you catch things early. Just be alert to any changes in your behavior/symptoms months down the road and call every single one in to your doctor, in case a pesky tumor recurs. Ask as many questions of your doctors as you need until you feel at ease, then believe in them and in your own will to heal. You've got this!!

      • August 28, 2016 at 6:05 pm
      jade1111
      Participant

      So sorry you are dealing with this.. Just wanted to mention my mom had 4 brain mets prior to gamma knife that she did in June and had no symptoms… They were small.. Hopefully they can zap it and its a non issue!!!

      • August 28, 2016 at 6:05 pm
      jade1111
      Participant

      So sorry you are dealing with this.. Just wanted to mention my mom had 4 brain mets prior to gamma knife that she did in June and had no symptoms… They were small.. Hopefully they can zap it and its a non issue!!!

      • August 28, 2016 at 6:05 pm
      jade1111
      Participant

      So sorry you are dealing with this.. Just wanted to mention my mom had 4 brain mets prior to gamma knife that she did in June and had no symptoms… They were small.. Hopefully they can zap it and its a non issue!!!

        • August 31, 2016 at 7:03 pm
        vickiaa0529
        Participant

        How is your Mom now?

         

        • August 31, 2016 at 7:03 pm
        vickiaa0529
        Participant

        How is your Mom now?

         

        • August 31, 2016 at 7:03 pm
        vickiaa0529
        Participant

        How is your Mom now?

         

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