Kevin here updating. :)
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Kevin here updating. :)

› Forums › General Melanoma Community › Kevin here updating. :)

  • Post
    • August 30, 2012 at 7:08 pm
    himynameiskevin
    Participant

    Sorry I've been MIA, I've been checking up, just haven't quite had the energy to post. These medications and WBR can really take a toll and figured it's be best if I just hunkered down, get my mind right, and rest the best I could until I feel somewhat normal and comfortable. Actually these were Brenda's orders, and she was right. 🙂

    So to update: and hopefully not repeating myself too much..

    Sorry I've been MIA, I've been checking up, just haven't quite had the energy to post. These medications and WBR can really take a toll and figured it's be best if I just hunkered down, get my mind right, and rest the best I could until I feel somewhat normal and comfortable. Actually these were Brenda's orders, and she was right. 🙂

    So to update: and hopefully not repeating myself too much..

     I started WBR on the 8th, and continued once a day every weekday, until the 28th. Done with that for now. Was a breeze. Fatigue is the only issue that might be from the WBR. No hearing, sight, or headache issues I'm aware of. I'm still taking a steroid for swelling. 8mg n the morning and 6mg at night. Luckily they've got me tapering of already. The steroid is the worst with all it's undesirable side effects. But sure is helping my appetite. Back up to normal weight. Not sure how swollen my face will get this time, I’m looking like a “John Lovitz Bobble Head”. Uncomfortable yes, but a I’d take a swelling face over a swelling brain any day. My energy is a little unpredictable with some of these pills and ruckus going on inside. Some parts of the day are good, great and bearable, some not so much. But I’m hanging in there, just a little tired from time to time. I'm also taking 120mg of Temodar at night 3 hours after eating, no problems with it at all.

    Future plan is still the same: Rest and feel better everyday, listen to my body and do what it says. Get some scans. Hope for stability/clarity or a manageable situation in my brain. Increase Temodar? Then get off the steroid completely ASAP and try IL-2 again? Maybe a Temodar/Zelboraf combo?

    We’ll see. For now I’m just trying to feel better today than yesterday and see what happens. Go from there. Somehow I’m still here, and doing my best to savor this gift. 🙂

    I'll try and be more active on here again real soon. Thanks for being by my side.

    Love and good thoughts to all of you. -Kevin

Viewing 32 reply threads
  • Replies
      • August 30, 2012 at 7:27 pm
      goldengirls2011
      Participant

      It's great to hear from you, Kevin! Keep fighting, and get lots of rest.

      Cathy (one of your many cheerleaders)

        • August 30, 2012 at 8:09 pm
        Laurie from maine
        Participant

        Hi Kevin,

        So glad you are taking brendas advice and just taking care of yourself and resting!!  I am so glad the brain radiation went well for you.  So for now just rest, eat and keep up your great positive attitude!.

        So good to hear from you, appreciate you posting.

        laurie from maine

        • August 30, 2012 at 8:09 pm
        Laurie from maine
        Participant

        Hi Kevin,

        So glad you are taking brendas advice and just taking care of yourself and resting!!  I am so glad the brain radiation went well for you.  So for now just rest, eat and keep up your great positive attitude!.

        So good to hear from you, appreciate you posting.

        laurie from maine

        • August 30, 2012 at 8:09 pm
        Laurie from maine
        Participant

        Hi Kevin,

        So glad you are taking brendas advice and just taking care of yourself and resting!!  I am so glad the brain radiation went well for you.  So for now just rest, eat and keep up your great positive attitude!.

        So good to hear from you, appreciate you posting.

        laurie from maine

      • August 30, 2012 at 7:27 pm
      goldengirls2011
      Participant

      It's great to hear from you, Kevin! Keep fighting, and get lots of rest.

      Cathy (one of your many cheerleaders)

      • August 30, 2012 at 7:27 pm
      goldengirls2011
      Participant

      It's great to hear from you, Kevin! Keep fighting, and get lots of rest.

      Cathy (one of your many cheerleaders)

      • August 30, 2012 at 9:43 pm
      aldakota22
      Participant

      Good to see your post.Always on your side.Praying that you have a future of great days ahead of you.Read you gained your weight back and still fighting.In my prayers everyday.Beat the Beast.  Al

      • August 30, 2012 at 9:43 pm
      aldakota22
      Participant

      Good to see your post.Always on your side.Praying that you have a future of great days ahead of you.Read you gained your weight back and still fighting.In my prayers everyday.Beat the Beast.  Al

      • August 30, 2012 at 9:43 pm
      aldakota22
      Participant

      Good to see your post.Always on your side.Praying that you have a future of great days ahead of you.Read you gained your weight back and still fighting.In my prayers everyday.Beat the Beast.  Al

      • August 30, 2012 at 11:10 pm
      MaryD
      Participant

      Hi Kevin,

      Great to see you post but glad you have been following Brenda's orders 🙂    You're doing all the right things to take care of yourself and very happy that you completed the WBR without too many issues.   Keep listening to your body as you're doing and I'll be sending good thoughts and prayers for the next steps.

      Thanks for letting us know how you are doing . .

      Best always . .

      Mary

      • August 30, 2012 at 11:10 pm
      MaryD
      Participant

      Hi Kevin,

      Great to see you post but glad you have been following Brenda's orders 🙂    You're doing all the right things to take care of yourself and very happy that you completed the WBR without too many issues.   Keep listening to your body as you're doing and I'll be sending good thoughts and prayers for the next steps.

      Thanks for letting us know how you are doing . .

      Best always . .

      Mary

      • August 30, 2012 at 11:10 pm
      MaryD
      Participant

      Hi Kevin,

      Great to see you post but glad you have been following Brenda's orders 🙂    You're doing all the right things to take care of yourself and very happy that you completed the WBR without too many issues.   Keep listening to your body as you're doing and I'll be sending good thoughts and prayers for the next steps.

      Thanks for letting us know how you are doing . .

      Best always . .

      Mary

      • August 31, 2012 at 12:18 am
      triciad
      Participant

      Kevin,

      You're always in my prayers.  Keep your amazing attitude and good things will come!

      Tricia

      • August 31, 2012 at 12:18 am
      triciad
      Participant

      Kevin,

      You're always in my prayers.  Keep your amazing attitude and good things will come!

      Tricia

      • August 31, 2012 at 12:18 am
      triciad
      Participant

      Kevin,

      You're always in my prayers.  Keep your amazing attitude and good things will come!

      Tricia

      • August 31, 2012 at 1:27 am
      lhaley
      Participant

      Glad you have posted.  The steroids are nasty but you will be getting off of them. I was on 16 mgs recently and tomorrow I go to 2mgs.   Note to Brenda:  massage Kevins upper back!  Last time I got the hump and it really hurt.  This time my hubby started massaging the area every night and it has kept it away!   Besides, it really feels good!

      There are so many of us sending you vibes!

      Love ya,  Linda

      • August 31, 2012 at 1:27 am
      lhaley
      Participant

      Glad you have posted.  The steroids are nasty but you will be getting off of them. I was on 16 mgs recently and tomorrow I go to 2mgs.   Note to Brenda:  massage Kevins upper back!  Last time I got the hump and it really hurt.  This time my hubby started massaging the area every night and it has kept it away!   Besides, it really feels good!

      There are so many of us sending you vibes!

      Love ya,  Linda

      • August 31, 2012 at 1:27 am
      lhaley
      Participant

      Glad you have posted.  The steroids are nasty but you will be getting off of them. I was on 16 mgs recently and tomorrow I go to 2mgs.   Note to Brenda:  massage Kevins upper back!  Last time I got the hump and it really hurt.  This time my hubby started massaging the area every night and it has kept it away!   Besides, it really feels good!

      There are so many of us sending you vibes!

      Love ya,  Linda

      • August 31, 2012 at 1:29 am
      awillett1991
      Participant
      Prayers, good vibes and good karma coming your way Kevi. Thanks so much for the update.

      Keep fighting!!

      • August 31, 2012 at 1:29 am
      awillett1991
      Participant
      Prayers, good vibes and good karma coming your way Kevi. Thanks so much for the update.

      Keep fighting!!

      • August 31, 2012 at 1:29 am
      awillett1991
      Participant
      Prayers, good vibes and good karma coming your way Kevi. Thanks so much for the update.

      Keep fighting!!

      • August 31, 2012 at 11:57 am
      jag
      Participant

      Kevin,

      Once again you sound great despite the circumstances, rest up, hunker down, and I'll say a prayer that things start going your way.

      John

        • August 31, 2012 at 4:00 pm
        willtolive
        Participant
        Your positivity can win this battle for you 🙂 stay positive and fight dear Kevin
        • August 31, 2012 at 4:00 pm
        willtolive
        Participant
        Your positivity can win this battle for you 🙂 stay positive and fight dear Kevin
        • August 31, 2012 at 4:00 pm
        willtolive
        Participant
        Your positivity can win this battle for you 🙂 stay positive and fight dear Kevin
      • August 31, 2012 at 11:57 am
      jag
      Participant

      Kevin,

      Once again you sound great despite the circumstances, rest up, hunker down, and I'll say a prayer that things start going your way.

      John

      • August 31, 2012 at 11:57 am
      jag
      Participant

      Kevin,

      Once again you sound great despite the circumstances, rest up, hunker down, and I'll say a prayer that things start going your way.

      John

      • August 31, 2012 at 9:12 pm
      mabrown2012
      Participant

      Dear Kevin:

      I had a spouse that passed from Melanoma. I understand a lot about it and I really feel for you. After 4 and a half years of studying everything regarding cancer, I learned so very much. Now I know how to help people like you and are helping many. I just wish I could have learned what I learned now before he passed. I just figure that God wanted him even more than I did. I was unable to save my daughter also. She had a very rare mixoid Sarcoma and she was 33 and left 4 children behind. I miss her badly. I was taking care of them at the same time and they passed two months apart. You can live. I know you can. You are a strong guy. Anyway if you are interested at all about what I have learned, which I know will help  you an awful lot just email me at jggraypi@gmail.com. I am not a young person as you, but I know things you would like to know. If you do not contact me, all I can say is that I will keep you in my prayers and be thinking of you. Blessings!

      • August 31, 2012 at 9:12 pm
      mabrown2012
      Participant

      Dear Kevin:

      I had a spouse that passed from Melanoma. I understand a lot about it and I really feel for you. After 4 and a half years of studying everything regarding cancer, I learned so very much. Now I know how to help people like you and are helping many. I just wish I could have learned what I learned now before he passed. I just figure that God wanted him even more than I did. I was unable to save my daughter also. She had a very rare mixoid Sarcoma and she was 33 and left 4 children behind. I miss her badly. I was taking care of them at the same time and they passed two months apart. You can live. I know you can. You are a strong guy. Anyway if you are interested at all about what I have learned, which I know will help  you an awful lot just email me at jggraypi@gmail.com. I am not a young person as you, but I know things you would like to know. If you do not contact me, all I can say is that I will keep you in my prayers and be thinking of you. Blessings!

      • August 31, 2012 at 9:12 pm
      mabrown2012
      Participant

      Dear Kevin:

      I had a spouse that passed from Melanoma. I understand a lot about it and I really feel for you. After 4 and a half years of studying everything regarding cancer, I learned so very much. Now I know how to help people like you and are helping many. I just wish I could have learned what I learned now before he passed. I just figure that God wanted him even more than I did. I was unable to save my daughter also. She had a very rare mixoid Sarcoma and she was 33 and left 4 children behind. I miss her badly. I was taking care of them at the same time and they passed two months apart. You can live. I know you can. You are a strong guy. Anyway if you are interested at all about what I have learned, which I know will help  you an awful lot just email me at jggraypi@gmail.com. I am not a young person as you, but I know things you would like to know. If you do not contact me, all I can say is that I will keep you in my prayers and be thinking of you. Blessings!

      • September 1, 2012 at 2:57 pm
      himynameiskevin
      Participant

      I just wanted to say thank you for the replies and positive feedback, they always make me feel so warm inside. Like content and blessed. Eases the sometimes worried mind and feels healing. Thankful to have all your support, I'm sure you can all relate. Glad we have each other. -Kevin

        • September 2, 2012 at 11:53 pm
        Retired41505
        Participant

        Glad to hear the WBR wasn't too awful. My son-in-law really had a tough time. Worst part was the brain cancer progressed during the 18 sessions. Go figure! But the Zelboraf is working it's magic and tumors are shrinking. Hang in there Kevin. Yes, it will be good to get off the steroids.

        Prayers with you man!

        • September 2, 2012 at 11:53 pm
        Retired41505
        Participant

        Glad to hear the WBR wasn't too awful. My son-in-law really had a tough time. Worst part was the brain cancer progressed during the 18 sessions. Go figure! But the Zelboraf is working it's magic and tumors are shrinking. Hang in there Kevin. Yes, it will be good to get off the steroids.

        Prayers with you man!

        • September 2, 2012 at 11:53 pm
        Retired41505
        Participant

        Glad to hear the WBR wasn't too awful. My son-in-law really had a tough time. Worst part was the brain cancer progressed during the 18 sessions. Go figure! But the Zelboraf is working it's magic and tumors are shrinking. Hang in there Kevin. Yes, it will be good to get off the steroids.

        Prayers with you man!

      • September 1, 2012 at 2:57 pm
      himynameiskevin
      Participant

      I just wanted to say thank you for the replies and positive feedback, they always make me feel so warm inside. Like content and blessed. Eases the sometimes worried mind and feels healing. Thankful to have all your support, I'm sure you can all relate. Glad we have each other. -Kevin

      • September 1, 2012 at 2:57 pm
      himynameiskevin
      Participant

      I just wanted to say thank you for the replies and positive feedback, they always make me feel so warm inside. Like content and blessed. Eases the sometimes worried mind and feels healing. Thankful to have all your support, I'm sure you can all relate. Glad we have each other. -Kevin

      • September 3, 2012 at 1:27 am
      Brooksy
      Participant

      Hi there, i was just reading your post, glad to see you are getting on top of all of this

      what a dreaded disease i too have been through the washing machine and pulled out

      and ready togo through again i think, tough times head but hey im always a fighter

      never give up you can do it i say.

       

      all the best to you Kevin stay strong and keep resting.

       

      cheers

      della

      • September 3, 2012 at 1:27 am
      Brooksy
      Participant

      Hi there, i was just reading your post, glad to see you are getting on top of all of this

      what a dreaded disease i too have been through the washing machine and pulled out

      and ready togo through again i think, tough times head but hey im always a fighter

      never give up you can do it i say.

       

      all the best to you Kevin stay strong and keep resting.

       

      cheers

      della

      • September 3, 2012 at 1:27 am
      Brooksy
      Participant

      Hi there, i was just reading your post, glad to see you are getting on top of all of this

      what a dreaded disease i too have been through the washing machine and pulled out

      and ready togo through again i think, tough times head but hey im always a fighter

      never give up you can do it i say.

       

      all the best to you Kevin stay strong and keep resting.

       

      cheers

      della

      • September 4, 2012 at 3:46 am
      Ali
      Participant

      Keep up the good fight, Kevin!  Thanks for the inspiration! 

      Ali

      • September 4, 2012 at 3:46 am
      Ali
      Participant

      Keep up the good fight, Kevin!  Thanks for the inspiration! 

      Ali

      • September 4, 2012 at 3:46 am
      Ali
      Participant

      Keep up the good fight, Kevin!  Thanks for the inspiration! 

      Ali

Viewing 32 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics