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Well, now in my brain…Can you help?

Forums General Melanoma Community Well, now in my brain…Can you help?

  • Post
    glewis923
    Participant

    Had MRI this AM.  at 2;00 my dr. called for "family" mtg.  have 2 five mm tumors on back lft.., 1 smaller in Thalamus, another in Ganglion area.  This sux, but i've been bracing myself for progression.  

    Had MRI this AM.  at 2;00 my dr. called for "family" mtg.  have 2 five mm tumors on back lft.., 1 smaller in Thalamus, another in Ganglion area.  This sux, but i've been bracing myself for progression.  

    Question:  All cyber- knife/stereostatic veterans:  did any of you have this many zapped away- in these diverse places,  AND did it "kill" them or did more simply appear?   Will find out tomorrow my options on ciber-knife and WBR (whole brain radiation)….BUT….I've come to the conclusion that many of you can give me better and straighter answers than many of the Drs' can-  so your input is valued.

    Thanks and Love ALL-  Grady & Family.

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      glewis923
      Participant

      Gee, i guess i could've just read the other posts….seems to be a rash of this lately.  However, i'd still like to know if anyone has ever had one on the Thalamus and/or Ganglion region.

      Thanks, Grady.

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      glewis923
      Participant

      Gee, i guess i could've just read the other posts….seems to be a rash of this lately.  However, i'd still like to know if anyone has ever had one on the Thalamus and/or Ganglion region.

      Thanks, Grady.

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        NicOz
        Participant

        There certainly HAVE been a lot of posts on here about this over the past 24/48 hours, hasn't there?

        Well… bugger about the news!

        I can tell you I had one near the globus pallidus which was treate d with SRS (LINAC) in 08- it's gone. Also currently have one close to the thalamus which I had SRS'd 2 months ago tomorrow! It's behaving itself as far as I know… I had some leg symptoms which resolved following SRS so that's promising!

        I think the most I had treated at one time was 3, but I've had 6/7/8? (honestly, I can't remember *blush*) treated so far. Some stabilised and started growing, most shrunk and have remained that way.

        Sorry to hear your news. Let us know how it goes.

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        NicOz
        Participant

        There certainly HAVE been a lot of posts on here about this over the past 24/48 hours, hasn't there?

        Well… bugger about the news!

        I can tell you I had one near the globus pallidus which was treate d with SRS (LINAC) in 08- it's gone. Also currently have one close to the thalamus which I had SRS'd 2 months ago tomorrow! It's behaving itself as far as I know… I had some leg symptoms which resolved following SRS so that's promising!

        I think the most I had treated at one time was 3, but I've had 6/7/8? (honestly, I can't remember *blush*) treated so far. Some stabilised and started growing, most shrunk and have remained that way.

        Sorry to hear your news. Let us know how it goes.

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        glewis923
        Participant

        speaking of leg symptoms- that's why my Dr. sent me-  my foot was twitching spamotically every few days for a couple of minutes.   first thought just the Taxol causing it, but unfortunately not.  Have a little foot dragging and slightly unbalaced rgt. leg, but not bad yet.

        How's the flooding in OZ?  Hope the waters have receded some.  Going to Jacksonville FL. today for radiation man.

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        glewis923
        Participant

        speaking of leg symptoms- that's why my Dr. sent me-  my foot was twitching spamotically every few days for a couple of minutes.   first thought just the Taxol causing it, but unfortunately not.  Have a little foot dragging and slightly unbalaced rgt. leg, but not bad yet.

        How's the flooding in OZ?  Hope the waters have receded some.  Going to Jacksonville FL. today for radiation man.

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        NicOz
        Participant

        Hope you have a good consult with the RadOnc and feel comfortable and confident with the treatment plan they suggest for you :)

        I was having intermittent numbness in my foot every couple of days (I called them my "foot farts" :P) because of my one near the thalamus, so I hear you!  IF you have SRS, try to remember that it can cause initial swelling around the radiated area, so if that's the route they take, remember don't panic if it seems the symptoms get worse… It's like my 5yo having a tantrum- goes off, then plateaus, then calms right down again.

        I have everything crossed for you that this will be your first and last incident with "pesky" brain mets :D

        (You probably know more about the floods here than I do- mostly I try to avoid the news, and being in country NSW have not been directly affected (other than having water restrictions lifted!)

        Nic :D

        xxx

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        NicOz
        Participant

        Hope you have a good consult with the RadOnc and feel comfortable and confident with the treatment plan they suggest for you :)

        I was having intermittent numbness in my foot every couple of days (I called them my "foot farts" :P) because of my one near the thalamus, so I hear you!  IF you have SRS, try to remember that it can cause initial swelling around the radiated area, so if that's the route they take, remember don't panic if it seems the symptoms get worse… It's like my 5yo having a tantrum- goes off, then plateaus, then calms right down again.

        I have everything crossed for you that this will be your first and last incident with "pesky" brain mets :D

        (You probably know more about the floods here than I do- mostly I try to avoid the news, and being in country NSW have not been directly affected (other than having water restrictions lifted!)

        Nic :D

        xxx

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      KatyWI
      Participant

      HI Grady,

      Sorry you're in the "club" now too…I hope the rash of other posts helps you feel like it's not quite as scary of a club as it initially seems.   Just to quick answer your question – I had four nuked at once; my doctor will tackle up to five at a go.  Three of mine are shrinking/dead/gone/doin' nothin' and the fourth decided it wanted to have a party and keep growing.  (That's the once scheduled for an untimely demise on Tuesday courtesy of my new ace neurosurgeon.)  I have had no new tumors appear since cyberknife, which was in November.  Let us know what they say!

      KatyWI

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      KatyWI
      Participant

      HI Grady,

      Sorry you're in the "club" now too…I hope the rash of other posts helps you feel like it's not quite as scary of a club as it initially seems.   Just to quick answer your question – I had four nuked at once; my doctor will tackle up to five at a go.  Three of mine are shrinking/dead/gone/doin' nothin' and the fourth decided it wanted to have a party and keep growing.  (That's the once scheduled for an untimely demise on Tuesday courtesy of my new ace neurosurgeon.)  I have had no new tumors appear since cyberknife, which was in November.  Let us know what they say!

      KatyWI

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      jag
      Participant

      I have to say Grady, this thread is fantastic.  I remember when I got my first brain met in 2006.   Nobody on this board except for a woman named Carole had ever survived a brain metastasis.  It was considered a death sentence back then.  When I read through the literature, it seemed that only 3% of patients lasted more than 4 years.  Nowadays, brain metastases are merely another stage IV thing for people to get around.  Sorry that you have to deal with this.  I have to say though, there is definitely hope.  Hang in there.

      John

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      jag
      Participant

      I have to say Grady, this thread is fantastic.  I remember when I got my first brain met in 2006.   Nobody on this board except for a woman named Carole had ever survived a brain metastasis.  It was considered a death sentence back then.  When I read through the literature, it seemed that only 3% of patients lasted more than 4 years.  Nowadays, brain metastases are merely another stage IV thing for people to get around.  Sorry that you have to deal with this.  I have to say though, there is definitely hope.  Hang in there.

      John

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      TAC
      Participant

      Grady…I believe that you are in south Georgia. You might investigate as a source of radiation treatment Shands Hospital in Gainesville, Fla. They have the latest proton beam treatment. You can Google proton beam therapy in Florida and it'll take you to the information…U of F Proton Therapy Institute. The proton beam delivers the radiation more precisely to the tumors therefore they can deliver larger doses without endangering surrounding brain tissue. Best wishes.

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      TAC
      Participant

      Grady…I believe that you are in south Georgia. You might investigate as a source of radiation treatment Shands Hospital in Gainesville, Fla. They have the latest proton beam treatment. You can Google proton beam therapy in Florida and it'll take you to the information…U of F Proton Therapy Institute. The proton beam delivers the radiation more precisely to the tumors therefore they can deliver larger doses without endangering surrounding brain tissue. Best wishes.

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        Vermont_Donna
        Participant

        Hi Grady,

        Have no experience with brain mets so no advice, but wishing you the best of luck with your treatments and so sorry the darn melanoma has progressed!

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Hi Grady,

        Have no experience with brain mets so no advice, but wishing you the best of luck with your treatments and so sorry the darn melanoma has progressed!

        Vermont_Donna, stage 3a

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