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done with PLX 4032; brain mets

Forums General Melanoma Community done with PLX 4032; brain mets

  • Post

    On Friday I was told that I do in fact have brain mets as well as edema.  It looks like the only option in Switzerland is WBR.  Their protocol is that if there are more than 3 tumours they do WBR.  After that they would do targeted therapy.  Thoughts???

    Screaming, crying, and reeling with this news!  Trying to stay on the positive side of things though.  Ipi looks like an option for brain mets.  Am I correct on this? 

    Shelly

    On Friday I was told that I do in fact have brain mets as well as edema.  It looks like the only option in Switzerland is WBR.  Their protocol is that if there are more than 3 tumours they do WBR.  After that they would do targeted therapy.  Thoughts???

    Screaming, crying, and reeling with this news!  Trying to stay on the positive side of things though.  Ipi looks like an option for brain mets.  Am I correct on this? 

    Shelly

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  • Replies
      MichaelFL
      Participant

      Damn Shelly, I am sorry to read this.

      I do not know what is used in Switzerland, but BCNU (Carmustine)

      and Temodar (Temozolomide) do cross the BBB.

      It is my understanding that ipilimumab itself does not cross the blood-brain barrier, but the newly activated T cells

      (T lymphocytes) will.

      Hang in there, and keep the board posted.

      Best wishes,

      Michael

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        Vermont_Donna
        Participant

        Hi Shelley,

        I wrote to you on your Caring bridges site……I am so sorry about this news…..its devastating, so scream and yell all you want then fight like heck. I do not know about treatment options but people here will post. I am hoping they can offer you the best treatments and fast too. What kind of insurance do you have…is it COBRA from the USA and does this cover things there or do you now have Swiss coverage? Would you consider treatment back in the States?? Hoping that treatment decisions are made soon and that you are happy with what is offered!

        Hugs,

        Vermont_Donna

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        Vermont_Donna
        Participant

        Hi Shelley,

        I wrote to you on your Caring bridges site……I am so sorry about this news…..its devastating, so scream and yell all you want then fight like heck. I do not know about treatment options but people here will post. I am hoping they can offer you the best treatments and fast too. What kind of insurance do you have…is it COBRA from the USA and does this cover things there or do you now have Swiss coverage? Would you consider treatment back in the States?? Hoping that treatment decisions are made soon and that you are happy with what is offered!

        Hugs,

        Vermont_Donna

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      MichaelFL
      Participant

      Damn Shelly, I am sorry to read this.

      I do not know what is used in Switzerland, but BCNU (Carmustine)

      and Temodar (Temozolomide) do cross the BBB.

      It is my understanding that ipilimumab itself does not cross the blood-brain barrier, but the newly activated T cells

      (T lymphocytes) will.

      Hang in there, and keep the board posted.

      Best wishes,

      Michael

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      Jan in OC
      Participant

      Hi Shelly, I am sorry to hear about this…we are in the US, California.  My husband was in the same position in December. On BRAF for 11 months, then his liver mets started growing.  While trying for a new trial, one little brain met showed up.  We were told that our options were temador or IPI for getting the mets under control (we opted for IPI).  

      To treat the brain met, we were offered SRS (cyberknife). The doc said they could do this for up to 6 small mets. After that our option would be WBR.   By the time they finished the planning stage (5 weeks), that nasty brain met grew and brought along a friend.  We finally has SRS last Thursday for his brain mets and we are due for his third IPI infusion next Wednesday.

       We keep hoping the IPI will start working soon! 

      Good luck to you.

      Jan, wife to Dirk

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      Jan in OC
      Participant

      Hi Shelly, I am sorry to hear about this…we are in the US, California.  My husband was in the same position in December. On BRAF for 11 months, then his liver mets started growing.  While trying for a new trial, one little brain met showed up.  We were told that our options were temador or IPI for getting the mets under control (we opted for IPI).  

      To treat the brain met, we were offered SRS (cyberknife). The doc said they could do this for up to 6 small mets. After that our option would be WBR.   By the time they finished the planning stage (5 weeks), that nasty brain met grew and brought along a friend.  We finally has SRS last Thursday for his brain mets and we are due for his third IPI infusion next Wednesday.

       We keep hoping the IPI will start working soon! 

      Good luck to you.

      Jan, wife to Dirk

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      Kim K
      Participant

      Damn!!!! Not my fellow lung surgery buddy!!!!!

      This sucks rocks!

      I guess once the swelling is down so they can get good numbers and sizes of mets, perhaps you can still do cyber knife / gamma treatment.  They can do more than 3 sites but it depends on size of the tumor and overall numbers together.  If there are too many to count then yeah, WBR.  If 3-5 less than 2.5-3.0 cm then perhaps GK followed by WBR….

      We really really need something besides Temodar to cross the blood/brain barrier…..

      I know that any immunologic treatments should have an effect across the BBB because cells can migrate through the BBB especially in the face of inflammation.

      I am so very sorry and saddened to hear of the turn of events.

      Reaching out across cyberspace to give you hugs.

       

      Kim

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      Kim K
      Participant

      Damn!!!! Not my fellow lung surgery buddy!!!!!

      This sucks rocks!

      I guess once the swelling is down so they can get good numbers and sizes of mets, perhaps you can still do cyber knife / gamma treatment.  They can do more than 3 sites but it depends on size of the tumor and overall numbers together.  If there are too many to count then yeah, WBR.  If 3-5 less than 2.5-3.0 cm then perhaps GK followed by WBR….

      We really really need something besides Temodar to cross the blood/brain barrier…..

      I know that any immunologic treatments should have an effect across the BBB because cells can migrate through the BBB especially in the face of inflammation.

      I am so very sorry and saddened to hear of the turn of events.

      Reaching out across cyberspace to give you hugs.

       

      Kim

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      lhaley
      Participant

      Shelly,

      I'm so sorry to hear that you've had this news. I know you suspected it but that really doesn't make it any easier, especially being so far from the support of your family. 

      Cyber hugs,

      Linda

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      lhaley
      Participant

      Shelly,

      I'm so sorry to hear that you've had this news. I know you suspected it but that really doesn't make it any easier, especially being so far from the support of your family. 

      Cyber hugs,

      Linda

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      FormerCaregiver
      Participant

      I wonder if you would be eligible for adoptive cell therapy? Here are some
      current trials that are recruiting new patients:

      http://clinicaltrials.gov/ct2/show/NCT00324623?term=melanoma+adoptive+Switzerland&rank=2

      http://clinicaltrials.gov/ct2/results?term=melanoma+adoptive&recr=Open

      Frank

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      FormerCaregiver
      Participant

      I wonder if you would be eligible for adoptive cell therapy? Here are some
      current trials that are recruiting new patients:

      http://clinicaltrials.gov/ct2/show/NCT00324623?term=melanoma+adoptive+Switzerland&rank=2

      http://clinicaltrials.gov/ct2/results?term=melanoma+adoptive&recr=Open

      Frank

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      KellieSue
      Participant

      I'm so sorry to hear about your brain mets. You were having great success on B-RAF too! (I've read your caringbridge)

      Good luck with your treatment and I hope you can get back to kicking cancers butt soon!

      Kellie(from Iowa) Stage IV on B-RAF

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      KellieSue
      Participant

      I'm so sorry to hear about your brain mets. You were having great success on B-RAF too! (I've read your caringbridge)

      Good luck with your treatment and I hope you can get back to kicking cancers butt soon!

      Kellie(from Iowa) Stage IV on B-RAF

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      glewis923
      Participant

      Dear Shelly-

      Thoughts?  OK:  1-  Sucks a rat's ass, does it not?   get mad / cry / pray- find a little solace….then: 

      2- Do something quickly, as brain tend to progress quickly.

      3- IF the "rules" there are WBR if more than 3 tumors (i'm to assume you have more than 3-  I had (hoping past tense) 12 confirmed)….then do WBR no later than beginning next week;  then do SRS / targeted / gamma-cyber-whatever-knife "surgery".

      4- Do NOT let anyone scare you "to death" (literally) about WBR.  You gotta do what you GOTTA do.  I did 2 "sessions" SRS,  then 1 week later 2 solid weeks of WBR.  It's not that bad.  My normal wit, charm, genious, bad spellin', self-depreciatory, humaness is still quite intact.  If anything, I truely felt giddy and stress relieved when i walked outta each WBR treatment.

      5- Assuming none of your tumors are deep in brain where a craniotomy would be virtually impossible, it would be fine to do WBR before SRS.  I had several near my brain stem- so i pleaded my case of doing SRS 1st.  Either which way, let them know you're as healthy as a horse and want to do BOTH QUICKLY !   

       

      Good luck, I had to do a balancing act btwn. what I knew had to be done quickly and some Drs. saying "we need to be careful about doing too much too quickly as you may have too many side effects"….whereas I did my best to politely reply:   "I DO NOT care about the severity / toxicity of side effects-  I'll be dead in 2 months if you don't move quickly and subsequently, I'll sign 1,000 waivers of "hold harmless".  Just "sock it to me !!!"

      Hope some of this helped, I just wish I'd learn 1 1/2 yrs. ago to hold the Drs.s' feet to the fire.

      WIshing , hoping, and praying for the best for ALL of us-

      Love, Grady.

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        Thanks for your spirited and uplifting reply.  I just had my first WBR zap today.  I have 5 mets; 2 – 2.6 and 2.7cm, one behind the eye and the two others I can't figure out where they were.  Memory already impaired…??? LOL

        I was rather surprised how I felt, very invaded.  As my husband noted: like having part of my soul zapped!

        I will have 18 zaps, wait a month, look for shrinking of the larger ones and no new ones, then do the STR, LINAC.

        The big trouble is with having to stop the b-raf which I was responding to except for the brain mets.  What do I put in place when I am declared NED?  The Ipi use here in Switzerland means I have to have failed a chemo drug.  My Onk here in Basel is suggesting I do DTIC concurrently with the radiotherapy just to get a jump on the time etc.  (We are trying to jump through hoops and be allowed to continue the Roche b-raf.)

        I plan on getting those buggers zapped and outta here ASAP.  I have daughter to launch into University this summer and a son next year.  I WILL be around for this!

        Take care.  Keep fighting.

        Surrounding all with love and light,

        Blessings,

        Shelly

         

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        lhaley
        Participant

        Shelly,

        I wonder if you could do Temador alng iwth the radiation instead f DTIC.  Temador crosses the brain barrier and from others posts I don't believe it is as hard on the body.

        Glad you were able to get started so quickly.

        Cyber hugs,

        Linda

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        lhaley
        Participant

        Shelly,

        I wonder if you could do Temador alng iwth the radiation instead f DTIC.  Temador crosses the brain barrier and from others posts I don't believe it is as hard on the body.

        Glad you were able to get started so quickly.

        Cyber hugs,

        Linda

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        Thanks for your spirited and uplifting reply.  I just had my first WBR zap today.  I have 5 mets; 2 – 2.6 and 2.7cm, one behind the eye and the two others I can't figure out where they were.  Memory already impaired…??? LOL

        I was rather surprised how I felt, very invaded.  As my husband noted: like having part of my soul zapped!

        I will have 18 zaps, wait a month, look for shrinking of the larger ones and no new ones, then do the STR, LINAC.

        The big trouble is with having to stop the b-raf which I was responding to except for the brain mets.  What do I put in place when I am declared NED?  The Ipi use here in Switzerland means I have to have failed a chemo drug.  My Onk here in Basel is suggesting I do DTIC concurrently with the radiotherapy just to get a jump on the time etc.  (We are trying to jump through hoops and be allowed to continue the Roche b-raf.)

        I plan on getting those buggers zapped and outta here ASAP.  I have daughter to launch into University this summer and a son next year.  I WILL be around for this!

        Take care.  Keep fighting.

        Surrounding all with love and light,

        Blessings,

        Shelly

         

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      glewis923
      Participant

      Dear Shelly-

      Thoughts?  OK:  1-  Sucks a rat's ass, does it not?   get mad / cry / pray- find a little solace….then: 

      2- Do something quickly, as brain tend to progress quickly.

      3- IF the "rules" there are WBR if more than 3 tumors (i'm to assume you have more than 3-  I had (hoping past tense) 12 confirmed)….then do WBR no later than beginning next week;  then do SRS / targeted / gamma-cyber-whatever-knife "surgery".

      4- Do NOT let anyone scare you "to death" (literally) about WBR.  You gotta do what you GOTTA do.  I did 2 "sessions" SRS,  then 1 week later 2 solid weeks of WBR.  It's not that bad.  My normal wit, charm, genious, bad spellin', self-depreciatory, humaness is still quite intact.  If anything, I truely felt giddy and stress relieved when i walked outta each WBR treatment.

      5- Assuming none of your tumors are deep in brain where a craniotomy would be virtually impossible, it would be fine to do WBR before SRS.  I had several near my brain stem- so i pleaded my case of doing SRS 1st.  Either which way, let them know you're as healthy as a horse and want to do BOTH QUICKLY !   

       

      Good luck, I had to do a balancing act btwn. what I knew had to be done quickly and some Drs. saying "we need to be careful about doing too much too quickly as you may have too many side effects"….whereas I did my best to politely reply:   "I DO NOT care about the severity / toxicity of side effects-  I'll be dead in 2 months if you don't move quickly and subsequently, I'll sign 1,000 waivers of "hold harmless".  Just "sock it to me !!!"

      Hope some of this helped, I just wish I'd learn 1 1/2 yrs. ago to hold the Drs.s' feet to the fire.

      WIshing , hoping, and praying for the best for ALL of us-

      Love, Grady.

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      sukie53
      Participant

      Dearest Shelly,

      I am so sad to hear this – you seemed to be doing so wonderfully well on plx. I pray every day for you and do hope that God gives you strength for the next stage in the battle, I'm sure he will. I don't know anything about brain mets but I am sure that with the wisdom of your doctors and the wealth of information here you will find the best path forward.

      I read that you were approaching a busy time with your kids – I think that it a good thing as it is something else to focus on. I found out that my mel had moved to stage 4 just 3 weeks before our daughters wedding but it was amazing how the excitment carried me though.

      Regarding myself….plx failed for me 2 months ago. I was pretty upset as I had only had 3 months on it. I knew it wouldn't last for ever but thought it might get me through to the summer. On the good side, loads of mets which plx had got rid of stayed away, but 2 large abdominal masses just grew like crazy. I have no idea about what it happening in my brain, as like you say, brain ct doesn't get done on the trial – I too think that is strange. I am now on Dacarbazine and just had the 2nd round. I am tolerating it quite well and although response rate is poor I am wondereing if I might be one of the lucky ones as I have had a lot of symptom relief. After this they are planning to give my ipi.

      God bless you Shelly,

      xSukie

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      sukie53
      Participant

      Dearest Shelly,

      I am so sad to hear this – you seemed to be doing so wonderfully well on plx. I pray every day for you and do hope that God gives you strength for the next stage in the battle, I'm sure he will. I don't know anything about brain mets but I am sure that with the wisdom of your doctors and the wealth of information here you will find the best path forward.

      I read that you were approaching a busy time with your kids – I think that it a good thing as it is something else to focus on. I found out that my mel had moved to stage 4 just 3 weeks before our daughters wedding but it was amazing how the excitment carried me though.

      Regarding myself….plx failed for me 2 months ago. I was pretty upset as I had only had 3 months on it. I knew it wouldn't last for ever but thought it might get me through to the summer. On the good side, loads of mets which plx had got rid of stayed away, but 2 large abdominal masses just grew like crazy. I have no idea about what it happening in my brain, as like you say, brain ct doesn't get done on the trial – I too think that is strange. I am now on Dacarbazine and just had the 2nd round. I am tolerating it quite well and although response rate is poor I am wondereing if I might be one of the lucky ones as I have had a lot of symptom relief. After this they are planning to give my ipi.

      God bless you Shelly,

      xSukie

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