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WBR

  • Post
    Janet2
    Participant

    I was admitted to hospital at the weekend and am home now — was getting dehydrated from vomiting/sickness and had severe headache/dizziness. CT scan shows carboplatin hasn't worked and all my tumours have grown plus new ones. Also, I now have a tumour on my brain and a subcutaneous one at the back on the right-hand side. I've been told to have a week's quality of life and it is planned I should start whole brain radiation to deal with the symptoms and help with with quality of life the following week.

    I was admitted to hospital at the weekend and am home now — was getting dehydrated from vomiting/sickness and had severe headache/dizziness. CT scan shows carboplatin hasn't worked and all my tumours have grown plus new ones. Also, I now have a tumour on my brain and a subcutaneous one at the back on the right-hand side. I've been told to have a week's quality of life and it is planned I should start whole brain radiation to deal with the symptoms and help with with quality of life the following week. I was wondering if anyone has had the whole brain irradiated and if so what are the side-effects during treatment and more long-term ones afterwards. Also, how long after treatment do the longer-term ones start and how long do they usually last? It is planned that I should have two sessions three — four days apart. I am having radiation to tumour by right hip as well. They are leaving the rest of my cancer so I don't know how it will behave and don't know if they will recommend any further treatment as they say I may not be well enough. I have already been turned down for  Ipilimumab due to my mobility problems. Any information would be appreciated. By the way I live in the UK.

    Janet 

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  • Replies
      Linda/Kentucky
      Participant

      I am so sorry to hear about your progression.  My husband and I just came back from scans following Ipi.  He too had major progression.  I don't really have any answers for you as I really don't have any answers for us.  This is why I am searching in vain on the computer at 5:00am looking for answers.  I can say we know what you are feeling right now and the fear of the unknown.  I pray God will open doors for us to know which path to take next.  I will say a prayer for you too that you may know what your next step will be. Good luck and I wish you well.  Keep us posted.

       

      Linda/Kentucky

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      Linda/Kentucky
      Participant

      I am so sorry to hear about your progression.  My husband and I just came back from scans following Ipi.  He too had major progression.  I don't really have any answers for you as I really don't have any answers for us.  This is why I am searching in vain on the computer at 5:00am looking for answers.  I can say we know what you are feeling right now and the fear of the unknown.  I pray God will open doors for us to know which path to take next.  I will say a prayer for you too that you may know what your next step will be. Good luck and I wish you well.  Keep us posted.

       

      Linda/Kentucky

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      jag
      Participant

      I would strongly reccomend a second opinion.  Here is a link for cancer therapy in the UK, it looks like there are 2 types of cancer teams, one a localized team and the other a specialized team.

      If you are seeing a localized team, I would upgrade to specialise if at all possible. 

      http://www.cancerhelp.org.uk/type/melanoma/about/should-i-see-a-melanoma-specialist 

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      jag
      Participant

      I would strongly reccomend a second opinion.  Here is a link for cancer therapy in the UK, it looks like there are 2 types of cancer teams, one a localized team and the other a specialized team.

      If you are seeing a localized team, I would upgrade to specialise if at all possible. 

      http://www.cancerhelp.org.uk/type/melanoma/about/should-i-see-a-melanoma-specialist 

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      Sharyn
      Participant

      Hi Janet,

      Sorry you're having to deal with this, but I fully understand what you're going through and how youe feel. I had two 5mm brain mets show up a year ago, plus numerous (a dozen or so) 1mm "spots", presumed to be more mets in the making. WBR was recommended by several doctors, mel specialists included, but like you, I was scared to death. My Dr in Halifax called me to persuade me to agree to the WBR. He told me that one of his anesthesiologists had WBR for melanoma brain mets, and he's been back to work for 4 years and doing fine. That was the deal maker for me, so I did 10 sessions from Oct 29-Nov 12, 2009. WBR is the easiest, totally pain-free treatment you can get. It's like getting an x-ray, but takes a few minutes longer. I was so worried it would affect my thought process, memory, cognition, etc., but a year later, I see no affects whatsoever!  The treatment worked in annihilating the numerous 1mm mets, shrunk another, and stablized the other. 

      One thing I'm concerned about with your situation is that you only have one brain met. I don't know why they aren't recommending gamma knife or cyberknife. These are types of stereotactic radiation surgery (SRS), but it is targeted radiation directly to the tumor, and has no effect on surrounding brain matter,

      Another concern is, if WBR is the only option, the schedule of treatments they have proposed. When my Dr was devising my schedule, she debated between 5 stronger treatments vs 10 milder treatments. Apparently, the stronger and longer the radiation per session, the more chance of brain damage. So my Dr recommended 10 sessions at a weaker dose. If I were you, I would be concerned about potential harm if you only have 2 sessions, as presumably they would be quite strong.

      Either way, with WBR, be prepared to lose your hair within a week after finishing treatment. So get a wig while you still have hair, so you can get something close to your current style and colour, and you'll have it on hand when your hair starts to fall out. I'd also recommend getting your head shaved, as if you leave your hair to fall out on its own, it can be quite messy, not to mention embarrassing. If you end up getting SRS instead, there is no hair loss with that — another bonus.

      I would strongly advise you to get a more specialized opinion, either from a melanoma specialist or radiation oncologist. Good luck, and please post when you make a decision and/or have your treatment.

      Hugs

      Sharyn

      From Newfoundland, the closest part of North America to the UK.

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      Sharyn
      Participant

      Hi Janet,

      Sorry you're having to deal with this, but I fully understand what you're going through and how youe feel. I had two 5mm brain mets show up a year ago, plus numerous (a dozen or so) 1mm "spots", presumed to be more mets in the making. WBR was recommended by several doctors, mel specialists included, but like you, I was scared to death. My Dr in Halifax called me to persuade me to agree to the WBR. He told me that one of his anesthesiologists had WBR for melanoma brain mets, and he's been back to work for 4 years and doing fine. That was the deal maker for me, so I did 10 sessions from Oct 29-Nov 12, 2009. WBR is the easiest, totally pain-free treatment you can get. It's like getting an x-ray, but takes a few minutes longer. I was so worried it would affect my thought process, memory, cognition, etc., but a year later, I see no affects whatsoever!  The treatment worked in annihilating the numerous 1mm mets, shrunk another, and stablized the other. 

      One thing I'm concerned about with your situation is that you only have one brain met. I don't know why they aren't recommending gamma knife or cyberknife. These are types of stereotactic radiation surgery (SRS), but it is targeted radiation directly to the tumor, and has no effect on surrounding brain matter,

      Another concern is, if WBR is the only option, the schedule of treatments they have proposed. When my Dr was devising my schedule, she debated between 5 stronger treatments vs 10 milder treatments. Apparently, the stronger and longer the radiation per session, the more chance of brain damage. So my Dr recommended 10 sessions at a weaker dose. If I were you, I would be concerned about potential harm if you only have 2 sessions, as presumably they would be quite strong.

      Either way, with WBR, be prepared to lose your hair within a week after finishing treatment. So get a wig while you still have hair, so you can get something close to your current style and colour, and you'll have it on hand when your hair starts to fall out. I'd also recommend getting your head shaved, as if you leave your hair to fall out on its own, it can be quite messy, not to mention embarrassing. If you end up getting SRS instead, there is no hair loss with that — another bonus.

      I would strongly advise you to get a more specialized opinion, either from a melanoma specialist or radiation oncologist. Good luck, and please post when you make a decision and/or have your treatment.

      Hugs

      Sharyn

      From Newfoundland, the closest part of North America to the UK.

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      lhaley
      Participant

      Janet,

      I am sorry to hear of your progression.  Mark from the Catskills posted just yesterday. Go into his message and click on his name to read about his journey. He had wbr a few years ago and is stable now! 

      Sending cyber hugs,

      Linda

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      lhaley
      Participant

      Janet,

      I am sorry to hear of your progression.  Mark from the Catskills posted just yesterday. Go into his message and click on his name to read about his journey. He had wbr a few years ago and is stable now! 

      Sending cyber hugs,

      Linda

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        Janet2
        Participant

        Thanks for everybody's messages. I cannot find Mark's posting — can anyone help me locate it? Many thanks.

        Janet 

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        Sharyn
        Participant

        It's entitled "Stage IV – Diagnosed 4 Years ago".

        Hugs

        Sharyn

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        Janet2
        Participant

        Thank you for everybody's messages which are much appreciated. The dose of my proposed radiation is 13 Gray over two doses, plus radiating my tumour on my stomach on another machine the same day. I don't know the dose that will be. I'm only be given that dose as I'm not expected to live long, maybe weeks maybe three — six months, we will see, as it is just to help make my life better.

        I'm just hoping I can cope as I have severe back problems and pain and cannot sit so hope there will be a trolley available to lie down as required.

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        Janet2
        Participant

        Thank you for everybody's messages which are much appreciated. The dose of my proposed radiation is 13 Gray over two doses, plus radiating my tumour on my stomach on another machine the same day. I don't know the dose that will be. I'm only be given that dose as I'm not expected to live long, maybe weeks maybe three — six months, we will see, as it is just to help make my life better.

        I'm just hoping I can cope as I have severe back problems and pain and cannot sit so hope there will be a trolley available to lie down as required.

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        Sharyn
        Participant

        It's entitled "Stage IV – Diagnosed 4 Years ago".

        Hugs

        Sharyn

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        Janet2
        Participant

        Thanks for everybody's messages. I cannot find Mark's posting — can anyone help me locate it? Many thanks.

        Janet 

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