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Update… Whole Brain Radiation – Suggestions Please

Forums General Melanoma Community Update… Whole Brain Radiation – Suggestions Please

  • Post
    lovingwifedeb
    Participant

    Cancer Sucks

    Cancer Sucks

    What else do you tell yourself when naked fear once again seeps inside your bones and curls around your heart to hang on for dear life, Cancer Sucks. Driving home Bob and I become lost in our own thoughts, each trying to catch our breath with the news given at his doctor’s appointment. I notice tears falling slowly against my husband’s cheek as he tries to compose himself, my heart is breaking. We are both in shock once more and losing control in our life has become familiar ground. Talk of summer vacation this week has slowly disappeared in the background as we come to grips as our reality swiftly changes not knowing what our future may bring us.

    In only 30 days 2 new lesions have appeared by Bob’s left eye. The melanoma cells have traveled from the tumor bed site that he recently had surgery on in January and gamma knife in February. The cells left there and have traveled in the lining of his brain (meninges) and have settled around his left eye becoming large enough for the MRI to detect. The doctor has recommended Whole Brain Radiation, 5 minutes per day/15 days. It’s the only way to treat the whole lining of the brain and for any melanoma cells that could be located anywhere else in his brain.

    Radiation kills the bad cells and good cells, we know this… some memory loss, loss of his white hair and it will make him tired. He will start by Thursday end of day. Bob is getting headaches more often now and has difficulty sometimes with speaking, he is still working.

    Also, I ask of those who are on this discussion board and know of WBR and have gone through it themselves to please add to this thread. My husband could use the support as this has shaken him badly. I do appreciate it and whatever words of encouragement you can give we certainly will appreciate it.

    Thank you.

    Please keep Bob close to your hearts in the following weeks.

    Peace to all.

    lovingwife to Bob, stage 4
    Deb

    If you would like to contact Bob
    bob.rogers2010.gmail.com

    If you would like to contact our family blog site:
    http://redesign08.blogspot.com/

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Viewing 15 reply threads
  • Replies
      ockelly
      Participant

      So sorry Deb.  I have been wondering about you two.  I will keep both of you in my prayers.  XO Kelly (in Lake Oswego)

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      ockelly
      Participant

      So sorry Deb.  I have been wondering about you two.  I will keep both of you in my prayers.  XO Kelly (in Lake Oswego)

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      Karen wife of Phil
      Participant

      Deb, I've been watching here and your blog to see what the results were. I am so sorry the news wasn't good. You are so right when you say "Cancer Sucks." I doubt anyone on the board would disagree. And with this particular one we are given such thin threads of hope to hang on to. We have been working with the Providence Eastside Oncology since we started this so have been particularly interested in your progress since you are at St. Vincent. Our news hasn't been positive either. Nothing we have tried has worked although Phil was diagnosed at Stage 4 in Septmeber of 2008 and is still here…so that's something. My heart goes out to you as it does to all on this board as we make this dreaded journey together. All we all can do is hold hands and fight the monster together. You and Bob will be in my thoughts.

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      Karen wife of Phil
      Participant

      Deb, I've been watching here and your blog to see what the results were. I am so sorry the news wasn't good. You are so right when you say "Cancer Sucks." I doubt anyone on the board would disagree. And with this particular one we are given such thin threads of hope to hang on to. We have been working with the Providence Eastside Oncology since we started this so have been particularly interested in your progress since you are at St. Vincent. Our news hasn't been positive either. Nothing we have tried has worked although Phil was diagnosed at Stage 4 in Septmeber of 2008 and is still here…so that's something. My heart goes out to you as it does to all on this board as we make this dreaded journey together. All we all can do is hold hands and fight the monster together. You and Bob will be in my thoughts.

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      Sharyn
      Participant

      Hi Deb,

      I was struck down with the shock of two 5mm and 13 1mm brain mets in October 2009. WBR was the recommendation of several doctors, but I was scared to death. It took some convincing, but the kicker was my Doc in Halifax who told me of an anesthesiologist in his hospital who had WBR for mel brain mets, and who is still now, several years later, working full time. It's been a year and a half for me, and I've had no loss of memory or cognitive functioning. The only thing I lost was my hair, but that soon grew back.  Since then I have had 2 treatments of SRS on new mets that have popped up, and just recently, a craniotomy, with more SRS to come. Before the craniotomy, I was dumbed down, and it was very frustrating. I couldn't find words for things, I lost part of my vision field, got easily confused, couldn't type or play the piano, kept bumping into things, etc. But once I had the craniotomy, I was back to my old self — energetic, seeing everything, articulate, easily multi-tasking, typing at my normal pace, and playing the piano again. It's really amazing, the difference it makes! In my humble, non-expert opinion, all the symptoms Bob is feeling now are a result of the pressure being put on his brain by the brain mets. I would think that once he has the WBR, he'll see a big improvement in himself. Yes, he will be tired for a few weeks afterwards, so rest, and his hair will fall out, but it will grow back. I didn't have any issues with nausea, but if he does, ask the doc for something for it. Go ahead and make your plans for a vacation. You'll be glad you did. I wish Bob the best of luck. Stay positive, and stay strong. If you want to email me privately, I'm at [email protected]

      Hugs

      Sharyn

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      Sharyn
      Participant

      Hi Deb,

      I was struck down with the shock of two 5mm and 13 1mm brain mets in October 2009. WBR was the recommendation of several doctors, but I was scared to death. It took some convincing, but the kicker was my Doc in Halifax who told me of an anesthesiologist in his hospital who had WBR for mel brain mets, and who is still now, several years later, working full time. It's been a year and a half for me, and I've had no loss of memory or cognitive functioning. The only thing I lost was my hair, but that soon grew back.  Since then I have had 2 treatments of SRS on new mets that have popped up, and just recently, a craniotomy, with more SRS to come. Before the craniotomy, I was dumbed down, and it was very frustrating. I couldn't find words for things, I lost part of my vision field, got easily confused, couldn't type or play the piano, kept bumping into things, etc. But once I had the craniotomy, I was back to my old self — energetic, seeing everything, articulate, easily multi-tasking, typing at my normal pace, and playing the piano again. It's really amazing, the difference it makes! In my humble, non-expert opinion, all the symptoms Bob is feeling now are a result of the pressure being put on his brain by the brain mets. I would think that once he has the WBR, he'll see a big improvement in himself. Yes, he will be tired for a few weeks afterwards, so rest, and his hair will fall out, but it will grow back. I didn't have any issues with nausea, but if he does, ask the doc for something for it. Go ahead and make your plans for a vacation. You'll be glad you did. I wish Bob the best of luck. Stay positive, and stay strong. If you want to email me privately, I'm at [email protected]

      Hugs

      Sharyn

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      Sherron
      Participant

      Oh Deb – I just feel like crying….that Melanoma has once again reared it's Ugly Head and wants to take control of someones body.( your loving husband)  This really does make my heart ache more than it already does…I hurt with you..and for you, the not knowing of what the future holds.  Please grab on to God's Hand…That is the only way I have made it this far…if I were to drop His hand, not sure where I would be right now, for sure a deeper and darker place than I already am in.  I will be praying for you and Bob.

      Take Care.

      Sherron, wife to Jim FOREVER

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      Sherron
      Participant

      Oh Deb – I just feel like crying….that Melanoma has once again reared it's Ugly Head and wants to take control of someones body.( your loving husband)  This really does make my heart ache more than it already does…I hurt with you..and for you, the not knowing of what the future holds.  Please grab on to God's Hand…That is the only way I have made it this far…if I were to drop His hand, not sure where I would be right now, for sure a deeper and darker place than I already am in.  I will be praying for you and Bob.

      Take Care.

      Sherron, wife to Jim FOREVER

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      Ditto Cancer Suck!

      I just had my first dose of WBR today.  Afterwards I just broke down and sobbed.   As my husband put it, it's like part of my soul was zapped.  Last week the MRI showed 5 brain mets; two  at 2.6 and 2.7 cm, one behind the eye and two others that I lost track of in the conversation.  

      I loved reading Sharyn's post!  What an inspiration!  I too  I to

      I too have just made summer plans to visit my family in Washington State in August and launch my daughter into University.  It is with these plans that I cling to hope;  Then I have an 11th grader to launch next year.  I plan to be there for that one too.  WBR is going to zap the hell out of those buggers! 

      In the meantime God is laying there with me shielding all the good brain cells and commanding the mel be gone!

      (Still scared silly but marching forward, actually stumbling forward due to mets…)

      Wig shoppping tomorrow.

      Good luck to Bob. 

      With peace and light surrounding you 24/7,

      Shelly

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        Sharyn
        Participant

        Hi Shelly,

        Just a friendly suggestion for you. When you go wig shopping tomorrow, don't commit to buying one yet. Write down the name of the brand, andcolour annd name or number of wigs you like. Then, when you go home, go to http://www.thewigs.com and see if it's there. They carry loads of brands and styles. If I had bought my wig locally, it would have cost me over $700, but by ordering it online, I got the same wig for $250.  That's a saving worth pursuing!  Good luck, and I hope you find a nice, sexy wig. You go girl!!

        Hugs

        Sharyn

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        Sharyn
        Participant

        Hi Shelly,

        Just a friendly suggestion for you. When you go wig shopping tomorrow, don't commit to buying one yet. Write down the name of the brand, andcolour annd name or number of wigs you like. Then, when you go home, go to http://www.thewigs.com and see if it's there. They carry loads of brands and styles. If I had bought my wig locally, it would have cost me over $700, but by ordering it online, I got the same wig for $250.  That's a saving worth pursuing!  Good luck, and I hope you find a nice, sexy wig. You go girl!!

        Hugs

        Sharyn

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        Ranisa
        Participant

        Check with your ins.  I had a friend who had to go wig shopping.  AND if it is called a cranial prosthesis ins covers it, but they don't cover wigs. 

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        Ranisa
        Participant

        Check with your ins.  I had a friend who had to go wig shopping.  AND if it is called a cranial prosthesis ins covers it, but they don't cover wigs. 

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      Ditto Cancer Suck!

      I just had my first dose of WBR today.  Afterwards I just broke down and sobbed.   As my husband put it, it's like part of my soul was zapped.  Last week the MRI showed 5 brain mets; two  at 2.6 and 2.7 cm, one behind the eye and two others that I lost track of in the conversation.  

      I loved reading Sharyn's post!  What an inspiration!  I too  I to

      I too have just made summer plans to visit my family in Washington State in August and launch my daughter into University.  It is with these plans that I cling to hope;  Then I have an 11th grader to launch next year.  I plan to be there for that one too.  WBR is going to zap the hell out of those buggers! 

      In the meantime God is laying there with me shielding all the good brain cells and commanding the mel be gone!

      (Still scared silly but marching forward, actually stumbling forward due to mets…)

      Wig shoppping tomorrow.

      Good luck to Bob. 

      With peace and light surrounding you 24/7,

      Shelly

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      lovingwifedeb
      Participant

      Thank you all for your support. Your words of encouragement are priceless today as I reflect on your words.

      Last night was devastating to the deepest part of my being… it was the worst day Bob has experienced so far. It was like talking to a babbling idiot and I mean that with all the love in my heart. His twisting of words and letters would come and go and Bob could tell it was happening. It scared him and it crushed me. I just don't know how much longer he will be able to work like this and he knows it… over 30 years. He's dealing with so much right now.

      Bob's first treatment was today. They finished fitting him with the face protection and zapped him before he knew what happened… 14 more days to go.

      Sharyn and Shelly especially thank you for sharing your experiences. I will read to him your replys. Shelly… if you could keep him posted as your treatments progress I'm sure it would make him feel not so alone. I will help him type replys….

      Peace to all.

      Deb

      lovingwife to Bob, stage 4

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        Jan in OC
        Participant

        Oh Deb, I know just how you feel.  When my husband was first diagnosed, it took him days to figure out how to tell me.  I knew something was wrong when he shut himself up in his office and would not talk to us.  That was in August, 2009.  I have been at his side for every doctor visit and treatment since that day.  Every time we get fail another treatment or get the latest scan, it is more bad news and he just shuts down for a few days.  Sometimes my heart just feels like it is breaking.  I go for a drive and cry a bit.  

        When he is ready, he starts joking about melanoma and I know he has worked it out in his mind.  Sometimes he gets angry and frustrated (as do I).  But we just keep hoping that the next treatment that we try will be the miracle and just focus on living.

         Last October, we drove to Oregon (from SoCal) and spent  2 weeks just roaming around seeing the sights, getting off the main highway and driving through small towns.  We would stop when he got tired and rest when he needed it.  It was a great trip and he was happy that we took time off from melanoma to do it.  

        We are trying now to plan something for this fall, even in our uncertain future.  Never give up hope.  Stay strong. Cry when you need to. Ask for help and allows others to help you (that was my hardest lesson). I wish the best for you and your husband.

        Jan, wife to Dirk

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        Jan in OC
        Participant

        Oh Deb, I know just how you feel.  When my husband was first diagnosed, it took him days to figure out how to tell me.  I knew something was wrong when he shut himself up in his office and would not talk to us.  That was in August, 2009.  I have been at his side for every doctor visit and treatment since that day.  Every time we get fail another treatment or get the latest scan, it is more bad news and he just shuts down for a few days.  Sometimes my heart just feels like it is breaking.  I go for a drive and cry a bit.  

        When he is ready, he starts joking about melanoma and I know he has worked it out in his mind.  Sometimes he gets angry and frustrated (as do I).  But we just keep hoping that the next treatment that we try will be the miracle and just focus on living.

         Last October, we drove to Oregon (from SoCal) and spent  2 weeks just roaming around seeing the sights, getting off the main highway and driving through small towns.  We would stop when he got tired and rest when he needed it.  It was a great trip and he was happy that we took time off from melanoma to do it.  

        We are trying now to plan something for this fall, even in our uncertain future.  Never give up hope.  Stay strong. Cry when you need to. Ask for help and allows others to help you (that was my hardest lesson). I wish the best for you and your husband.

        Jan, wife to Dirk

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      lovingwifedeb
      Participant

      Thank you all for your support. Your words of encouragement are priceless today as I reflect on your words.

      Last night was devastating to the deepest part of my being… it was the worst day Bob has experienced so far. It was like talking to a babbling idiot and I mean that with all the love in my heart. His twisting of words and letters would come and go and Bob could tell it was happening. It scared him and it crushed me. I just don't know how much longer he will be able to work like this and he knows it… over 30 years. He's dealing with so much right now.

      Bob's first treatment was today. They finished fitting him with the face protection and zapped him before he knew what happened… 14 more days to go.

      Sharyn and Shelly especially thank you for sharing your experiences. I will read to him your replys. Shelly… if you could keep him posted as your treatments progress I'm sure it would make him feel not so alone. I will help him type replys….

      Peace to all.

      Deb

      lovingwife to Bob, stage 4

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      lovingwifedeb
      Participant

      Update…

      Today was day 2 of WBR radiation treatment… Bob is taking them at 4:00 and coming home then taking a nap. He manages a shop and his coworkers are supporting him, covering him in whatever way he needs to get through his day. His words are better but still turned around some. His headaches are bad so he trying to get his doctors to work with him on finding something else that might be better for his pain.

      Damn… what a week.

      Still… he is tinkering with his beloved Harley and fussing with putting new tires on and hoping for that summer trip to Mt. Zion in Utah. Hopefully it will be both us on that red mistress he cherishes so highly and flying in the wind on that desert highway.

      Let's hope for better days.

       

      Deb

      lovingwife to Bob, stage 4

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      lovingwifedeb
      Participant

      Update…

      Today was day 2 of WBR radiation treatment… Bob is taking them at 4:00 and coming home then taking a nap. He manages a shop and his coworkers are supporting him, covering him in whatever way he needs to get through his day. His words are better but still turned around some. His headaches are bad so he trying to get his doctors to work with him on finding something else that might be better for his pain.

      Damn… what a week.

      Still… he is tinkering with his beloved Harley and fussing with putting new tires on and hoping for that summer trip to Mt. Zion in Utah. Hopefully it will be both us on that red mistress he cherishes so highly and flying in the wind on that desert highway.

      Let's hope for better days.

       

      Deb

      lovingwife to Bob, stage 4

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      ockelly
      Participant

      Deb

      Is Bob BRAF +?   If so check out the new post on the GSK clinical trial for brain mets.  Might be a a good choice when this phase of treatment is over.

      Keeping you and Bob in my prayers.

      Kelly

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        lovingwifedeb
        Participant
        Thanks Kelly,
        I’ve read & printed the article for Bob to take with him to his doctors appt. this week – With Onc John Smith on the 17th. I thought Tremdor? Sp? Was the only drug to cross the blood brain barrier? All very confusing now.
        Bob’s had 3 days of rad with no improvement of symptoms (I know still early but frustrating all the same)… a difficult week.

        Deb
        lovingwife to Bob, stage 4

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        lovingwifedeb
        Participant
        Thanks Kelly,
        I’ve read & printed the article for Bob to take with him to his doctors appt. this week – With Onc John Smith on the 17th. I thought Tremdor? Sp? Was the only drug to cross the blood brain barrier? All very confusing now.
        Bob’s had 3 days of rad with no improvement of symptoms (I know still early but frustrating all the same)… a difficult week.

        Deb
        lovingwife to Bob, stage 4

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      ockelly
      Participant

      Deb

      Is Bob BRAF +?   If so check out the new post on the GSK clinical trial for brain mets.  Might be a a good choice when this phase of treatment is over.

      Keeping you and Bob in my prayers.

      Kelly

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