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Checking in from the NIH.

Forums General Melanoma Community Checking in from the NIH.

  • Post
    himynameiskevin
    Participant

      Well I'm a week into the treatment. It's been a rough week.. bittersweet I guess. Peaks and valleys. But it feels great have just finished my last bag of chemo. So to update those interested…

      Well I'm a week into the treatment. It's been a rough week.. bittersweet I guess. Peaks and valleys. But it feels great have just finished my last bag of chemo. So to update those interested…

      I got here last monday morning at about 2am and was taken for my money by the taxi driver for 100 dollars for a ride I was told normally cost around 45. (this is from the DC airport to the NIH). He claimed it's his minimum for the Buick he was driving, We disputed and I knew he was taking advantage of me but at 2am after 14 hours of travel and standing in 30 degree weather, I just gave him the cash and headed inside. Disappointing. But I learned a lesson. Yellow cabs with meters from here on out.

      After checking in and sleeping few hours, I had a procedure done where they put an IV in my chest. There's two ports that go under my skin, to a tube that runs under my skin up to my collar bone where it goes over and down into my vena cava from what I understand. It'll stay the for almost two months. It's uncomfortable and I don't like it but it's necessary and means no shots for two months. :)

      On Tuesday I unfortunately ate something my stomach didn't agree with and started throwing up with a fever before I ever started my first bag of chemo. This wasn't any fun because the main side effects of this chemo are nausea and vomiting so that just added to it. I did that chemo for two days, continuously hooked up to my IV with other fluids to help protect me from it's effects. Then on Thursday I started the other chemo which I had to do once a day for 30 minutes a day for five days. The rest of the day I was unhooked from everything, able to go out on pass and would've felt fantastic if I wasn't dealing with getting over that stomach bug. But it hasn't been to bad, only complaint is a homesickness and the loss of appetite which is coming back to me, slowly but surely.

      And here I am now, sitting on my bed, anticipating getting my cells back tomorrow. I should be neutropenic soon I think, Then on Wednesday I start the IL-2 for as long as I can tolerate. We'll see how that goes. And then… and then… on the 15th Brenda (wife of 3 months) will be here to help me recover. :) :) And my parents are going to try and make it up here for a day as well, which will be really good for me but even better for them. I'm their only child and boy are they worried, which is understandable but I know once they see me and the care I'm under, they'll definitely be little more at ease.

      Lastly, about an hour a go, the big team of researchers (Drs, fellows, surgeons, lab techs…) doing the protocol made there weekly round here and came to my room for a minute. And Dr Steven Rosenberg was among the group. I didn't know much about the guy other than he's running the show here and has been for quite some time so I looked up a bio of him last night and was extremely impressed to say the least, speechless, I had no idea. (http://ccr.nci.nih.gov/staff/staff.asp?profileid=5757) So I just met him briefly for the first time and shook his hand, I feel I just shook the hand of Gandhi or John Lennon or something. :) Anyway, he appears to know his stuff and a bit of weight has been lifted off my shoulders being under his and all of his teams care.

      Well that's all for now. I'm off to chew on ice and saltines. And try to manifest that these cells will know what to do once inside me. ;) I hope all is well with everyone. If the IL-2 doesn't have me too down and out, I'll check in later this week.

      Best wishes to everyone. -Kevin

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    • Replies
        Melanoma Mom
        Participant

          Praying for you, Kevin!

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          Melanoma Mom
          Participant

            Praying for you, Kevin!

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            stillhopeful
            Participant

              Thank you for the description of the treatment.  I will probably do this at MD Anderson.  Unfortunately, I cannot go to NIH because I am the wrong HLAA type and have mucosal melanoma.  This rules me out of all their clinical trials for ACT.  Did they give you anything for the nausea?  I hope the stomach bug goes away.

              I  hope your Tcells kick in and attack the melanoma.  Good luck to you!

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              stillhopeful
              Participant

                Thank you for the description of the treatment.  I will probably do this at MD Anderson.  Unfortunately, I cannot go to NIH because I am the wrong HLAA type and have mucosal melanoma.  This rules me out of all their clinical trials for ACT.  Did they give you anything for the nausea?  I hope the stomach bug goes away.

                I  hope your Tcells kick in and attack the melanoma.  Good luck to you!

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                  Laurie from maine
                  Participant

                    HI,

                    We are all following how you are doing, so thank you for checking in.  So glad you like the doctors and feel relieved that you are in good hands, that is a huge help!  ALso so glad your wife and parents can come for their sake and yours.

                    stay strong, you are doing great!!  we are all here rooting and praying for you.

                    laurie from maine

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                    Laurie from maine
                    Participant

                      HI,

                      We are all following how you are doing, so thank you for checking in.  So glad you like the doctors and feel relieved that you are in good hands, that is a huge help!  ALso so glad your wife and parents can come for their sake and yours.

                      stay strong, you are doing great!!  we are all here rooting and praying for you.

                      laurie from maine

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                    lhaley
                    Participant

                      Kevin,

                      Sounds like your in kick melanoma's butt mode!  Glad you feel confident with your team and things are progressing like they should – except for the stomach bug!! 

                      I was also taken once by a taxi driver in DC. Then on the way to the train station 1st he stopped to get himself something to drink (soda) and had to go out of the way to do it, all of a sudden he claimed his brakes didn't work and told me to get out!  I didn't pay him but there I was stuck and didn't have a clue as to where I was!!!   I was crying by the time another taxi pulled up!  You might want to find out how much one of the shuttle services cost, that way there are no surprises when you leave!!

                      Thanks for keeping us up to date. Sending prayers and hugs for a quick response!!

                      Linda

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                      lhaley
                      Participant

                        Kevin,

                        Sounds like your in kick melanoma's butt mode!  Glad you feel confident with your team and things are progressing like they should – except for the stomach bug!! 

                        I was also taken once by a taxi driver in DC. Then on the way to the train station 1st he stopped to get himself something to drink (soda) and had to go out of the way to do it, all of a sudden he claimed his brakes didn't work and told me to get out!  I didn't pay him but there I was stuck and didn't have a clue as to where I was!!!   I was crying by the time another taxi pulled up!  You might want to find out how much one of the shuttle services cost, that way there are no surprises when you leave!!

                        Thanks for keeping us up to date. Sending prayers and hugs for a quick response!!

                        Linda

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                        James from Sydney
                        Participant

                          Kevin, good luck with it all it sounds like you are in the best of hands and you are about to kick some goals. I have a son about your age and am right in your corner, go and get those miserable Melanoma cells and smash them to pieces!

                          best wishes

                          James

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                          James from Sydney
                          Participant

                            Kevin, good luck with it all it sounds like you are in the best of hands and you are about to kick some goals. I have a son about your age and am right in your corner, go and get those miserable Melanoma cells and smash them to pieces!

                            best wishes

                            James

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                            ValinMtl
                            Participant

                              Stay strong Kevin.  Thanks for updating us…we're all pulling hard for you.  Val xx

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                              ValinMtl
                              Participant

                                Stay strong Kevin.  Thanks for updating us…we're all pulling hard for you.  Val xx

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                                EmilyandMike
                                Participant

                                  Kevin – you are such a trooper.  You are truly an amazing guy – so brave and strong.  I am sorry you are there by yourself but your wife will be there before you know it.    I am jealous that you got to meet Rosenberg!  So cool.  Please keep us posted.  Do you have a blog?  Let me know if you need help creating one.  I find blogging to be very therapeutic!  

                                  Emily

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                                  EmilyandMike
                                  Participant

                                    Kevin – you are such a trooper.  You are truly an amazing guy – so brave and strong.  I am sorry you are there by yourself but your wife will be there before you know it.    I am jealous that you got to meet Rosenberg!  So cool.  Please keep us posted.  Do you have a blog?  Let me know if you need help creating one.  I find blogging to be very therapeutic!  

                                    Emily

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                                    Rocco
                                    Participant
                                      Clinical Trial ParticipantNED

                                      Hi Kevin!

                                      Glad to hear that Chemo is over and that you'll get your cells tomorrow.  IL-2 is no picnic, but it sounds like you're in fighting mode plus you'll have the cells there to help you kick mel's butt.   All that plus you met the rock star, Dr. Rosenberg.  You're in good hands there. 

                                      While waiting for your beloved wife and family to arrive, is there anything any of us could send you to make the time go by?   You're tapped into a pretty great group of people on this board.  Over the years they've gotten me through a number of my procedures and IL-2.   

                                      Good vibes and prayers are sent your way this evening. Hang in there -better days are on the horizon! 

                                      Rocco, Stage IV since Aug 2005

                                      6 surgeries; radiation;  IL-2; Trial: Adoptive Cell Transfer of Mart1/MelanA; Trial: Compassionate Use: Ipi (MDX-010)

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                                      Rocco
                                      Participant
                                        Clinical Trial ParticipantNED

                                        Hi Kevin!

                                        Glad to hear that Chemo is over and that you'll get your cells tomorrow.  IL-2 is no picnic, but it sounds like you're in fighting mode plus you'll have the cells there to help you kick mel's butt.   All that plus you met the rock star, Dr. Rosenberg.  You're in good hands there. 

                                        While waiting for your beloved wife and family to arrive, is there anything any of us could send you to make the time go by?   You're tapped into a pretty great group of people on this board.  Over the years they've gotten me through a number of my procedures and IL-2.   

                                        Good vibes and prayers are sent your way this evening. Hang in there -better days are on the horizon! 

                                        Rocco, Stage IV since Aug 2005

                                        6 surgeries; radiation;  IL-2; Trial: Adoptive Cell Transfer of Mart1/MelanA; Trial: Compassionate Use: Ipi (MDX-010)

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                                          himynameiskevin
                                          Participant

                                            Hey thanks Rocco, (cool name by the way). I'm pretty content right now, spending alot of time playing internet board  games and such, and I've got a couple books but if anyones feels like sending something, my address is… 10 Center Dr CRC Bldg 10 3NW Rm#2640 Bethesda, MD 20892. But don't feel obligated, I'm doing good as is, I finally got a great nights sleep, my tempature is nor back to normal and stomach almost feels normal. Spirits are high and can honestly say this is the best I've felt since I've been here. Thank you and everyone else on here for the support, it' s a real huge factor towards how I feel.

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                                            himynameiskevin
                                            Participant

                                              Hey thanks Rocco, (cool name by the way). I'm pretty content right now, spending alot of time playing internet board  games and such, and I've got a couple books but if anyones feels like sending something, my address is… 10 Center Dr CRC Bldg 10 3NW Rm#2640 Bethesda, MD 20892. But don't feel obligated, I'm doing good as is, I finally got a great nights sleep, my tempature is nor back to normal and stomach almost feels normal. Spirits are high and can honestly say this is the best I've felt since I've been here. Thank you and everyone else on here for the support, it' s a real huge factor towards how I feel.

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                                            LBN
                                            Participant

                                              Glad to hear you made it throught the chemo! I mentioned in an earlier post that I went through this treatment at UCLA earlier this year. I might mention that if you have any hair left on your head now you may want them to shave it before you go to IL-2. I found by the third day of IL-2 my hair was coming out in clumps and with the heavy creams they use for your IL-2 rash – well lets just say it got kinda messy. Keep up the positive thoughts and stay strong! Looking forward to hearing from you afer IL-2!

                                              Laurie

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                                              LBN
                                              Participant

                                                Glad to hear you made it throught the chemo! I mentioned in an earlier post that I went through this treatment at UCLA earlier this year. I might mention that if you have any hair left on your head now you may want them to shave it before you go to IL-2. I found by the third day of IL-2 my hair was coming out in clumps and with the heavy creams they use for your IL-2 rash – well lets just say it got kinda messy. Keep up the positive thoughts and stay strong! Looking forward to hearing from you afer IL-2!

                                                Laurie

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                                                  himynameiskevin
                                                  Participant

                                                    Luckily, my hair has been pretty thin since high school, so it's kept pretty short and shaved all the time, I gave it a fresh clipping before coming here so hopefully it falling out won't be too bad.

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                                                    himynameiskevin
                                                    Participant

                                                      Luckily, my hair has been pretty thin since high school, so it's kept pretty short and shaved all the time, I gave it a fresh clipping before coming here so hopefully it falling out won't be too bad.

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                                                    jolainajo
                                                    Participant

                                                      Hi Kevin….. I responded to you in your last post, I went through the same thing at NIH in June,, I met Dr. Rosenburg too and even got him to sign my journal, I felt pretty cool… lol…I think its funny when all the Dr's come in 2x a day to do rounds, and they all stand at your bed, as if you arnt there.. well the good news is the chemo is over and that was the hardest part, the IL-2 isnt bad at all, except for the lucid dreams toward the end, you will know what Im talking about. Did you ever meet a Jessie or Monica? THey are my fav nurses, well they all are really good, except when they come in at all hours of the night, oh,,, and that meal thing, you will hate ordering after awhile, Well,, please keep us posted on your progress, and let us know how many cells you did get, I got 18.4 billion. If you ever need to talk you can email me too [email protected].. I know it gets pretty boring in that place, and when you become neutropenic, you cant leave without a mask and its really hard, but its a great place to be… Prayin for ya… Jolaina Walling

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                                                      jolainajo
                                                      Participant

                                                        Hi Kevin….. I responded to you in your last post, I went through the same thing at NIH in June,, I met Dr. Rosenburg too and even got him to sign my journal, I felt pretty cool… lol…I think its funny when all the Dr's come in 2x a day to do rounds, and they all stand at your bed, as if you arnt there.. well the good news is the chemo is over and that was the hardest part, the IL-2 isnt bad at all, except for the lucid dreams toward the end, you will know what Im talking about. Did you ever meet a Jessie or Monica? THey are my fav nurses, well they all are really good, except when they come in at all hours of the night, oh,,, and that meal thing, you will hate ordering after awhile, Well,, please keep us posted on your progress, and let us know how many cells you did get, I got 18.4 billion. If you ever need to talk you can email me too [email protected].. I know it gets pretty boring in that place, and when you become neutropenic, you cant leave without a mask and its really hard, but its a great place to be… Prayin for ya… Jolaina Walling

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                                                          himynameiskevin
                                                          Participant

                                                            Ah, the lucid dreams… I remember those from the IL-2 in San Diego.. You know, besides the weight gain the lucid dreams were my only side effect of the IL-2 I did. I felt fine the entire time and maxed out at 14 bags my first round. They say that this IL-2 sholdn't be as bad as the other, so if that's the case.. this should be walk in the park, which almost seems to good to be true… but we'll see, starting it sometime to day. :) Looking forward to how many cells I get.. I'll let you know. One of the Lab Techs actutally gave me a tour of the lab last night, he took me to all the differnet rooms and showed me slides of tumors and tcells in microscopes and how the whole process works, really interesting stuff. I'm don't think I've met a Jessie yet, but Monica sounds familiar, If I meet either, I will give them a hello from you. :)

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                                                            himynameiskevin
                                                            Participant

                                                              Ah, the lucid dreams… I remember those from the IL-2 in San Diego.. You know, besides the weight gain the lucid dreams were my only side effect of the IL-2 I did. I felt fine the entire time and maxed out at 14 bags my first round. They say that this IL-2 sholdn't be as bad as the other, so if that's the case.. this should be walk in the park, which almost seems to good to be true… but we'll see, starting it sometime to day. :) Looking forward to how many cells I get.. I'll let you know. One of the Lab Techs actutally gave me a tour of the lab last night, he took me to all the differnet rooms and showed me slides of tumors and tcells in microscopes and how the whole process works, really interesting stuff. I'm don't think I've met a Jessie yet, but Monica sounds familiar, If I meet either, I will give them a hello from you. :)

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                                                              himynameiskevin
                                                              Participant

                                                                Well, they just gave me my cells. 51.7 billion. I start the IL-2 in 30 minutes. Now just hope these cells know what to do. :)

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                                                                himynameiskevin
                                                                Participant

                                                                  Well, they just gave me my cells. 51.7 billion. I start the IL-2 in 30 minutes. Now just hope these cells know what to do. :)

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                                                                jolainajo
                                                                Participant

                                                                  Hi Kevin….. I responded to you in your last post, I went through the same thing at NIH in June,, I met Dr. Rosenburg too and even got him to sign my journal, I felt pretty cool… lol…I think its funny when all the Dr's come in 2x a day to do rounds, and they all stand at your bed, as if you arnt there.. well the good news is the chemo is over and that was the hardest part, the IL-2 isnt bad at all, except for the lucid dreams toward the end, you will know what Im talking about. Did you ever meet a Jessie or Monica? THey are my fav nurses, well they all are really good, except when they come in at all hours of the night, oh,,, and that meal thing, you will hate ordering after awhile, Well,, please keep us posted on your progress, and let us know how many cells you did get, I got 18.4 billion. If you ever need to talk you can email me too [email protected].. I know it gets pretty boring in that place, and when you become neutropenic, you cant leave without a mask and its really hard, but its a great place to be… Prayin for ya… Jolaina Walling

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                                                                  jolainajo
                                                                  Participant

                                                                    Hi Kevin….. I responded to you in your last post, I went through the same thing at NIH in June,, I met Dr. Rosenburg too and even got him to sign my journal, I felt pretty cool… lol…I think its funny when all the Dr's come in 2x a day to do rounds, and they all stand at your bed, as if you arnt there.. well the good news is the chemo is over and that was the hardest part, the IL-2 isnt bad at all, except for the lucid dreams toward the end, you will know what Im talking about. Did you ever meet a Jessie or Monica? THey are my fav nurses, well they all are really good, except when they come in at all hours of the night, oh,,, and that meal thing, you will hate ordering after awhile, Well,, please keep us posted on your progress, and let us know how many cells you did get, I got 18.4 billion. If you ever need to talk you can email me too [email protected].. I know it gets pretty boring in that place, and when you become neutropenic, you cant leave without a mask and its really hard, but its a great place to be… Prayin for ya… Jolaina Walling

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                                                                    jag
                                                                    Participant

                                                                      Kevin, I will be saying a prayer for you tonight.  Be strong.

                                                                      John 

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                                                                      jag
                                                                      Participant

                                                                        Kevin, I will be saying a prayer for you tonight.  Be strong.

                                                                        John 

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                                                                        BethA in VA
                                                                        Participant

                                                                          Hi Kevin.  Wow, what a journey you are on.  I'm so glad you posted what has been happening.  This is allot to go thru, but it's going to work and will be worthwhile.  I know you will be happy to have family with you.  As a parent of sons & a daughter, that must be close to your age, I can only imagine what your parents are going through.  It is wonderful to hear you concerned about them.  That is a loving son. 

                                                                          I will keep you in my prayers as you go thru your days.  Good luck with your treatment.  And please keep posting.  This is a great group of caring people…so you are never alone.  Beth 3/B

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                                                                          BethA in VA
                                                                          Participant

                                                                            Hi Kevin.  Wow, what a journey you are on.  I'm so glad you posted what has been happening.  This is allot to go thru, but it's going to work and will be worthwhile.  I know you will be happy to have family with you.  As a parent of sons & a daughter, that must be close to your age, I can only imagine what your parents are going through.  It is wonderful to hear you concerned about them.  That is a loving son. 

                                                                            I will keep you in my prayers as you go thru your days.  Good luck with your treatment.  And please keep posting.  This is a great group of caring people…so you are never alone.  Beth 3/B

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                                                                            kristylee92
                                                                            Participant
                                                                              I wish you the best of luck with your IL2 treatments. I know you will make it through it. My father completed 2 rounds of it in June & July of this year and he got through it with no complications. He coped with the side effects by sleeping as much as possible. I’ll keep your family in my prayers.

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                                                                              kristylee92
                                                                              Participant
                                                                                I wish you the best of luck with your IL2 treatments. I know you will make it through it. My father completed 2 rounds of it in June & July of this year and he got through it with no complications. He coped with the side effects by sleeping as much as possible. I’ll keep your family in my prayers.

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                                                                                molly
                                                                                Participant

                                                                                  Kevin, thanks so much for the update. I am happy things are going well for you and wish you continued success as you continue the treatment! 

                                                                                  molly

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                                                                                  molly
                                                                                  Participant

                                                                                    Kevin, thanks so much for the update. I am happy things are going well for you and wish you continued success as you continue the treatment! 

                                                                                    molly

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                                                                                    killmel
                                                                                    Participant

                                                                                      Kevin,

                                                                                       

                                                                                      You are an inspiration & have a great attitude.

                                                                                       

                                                                                      I am curious as to what you do: are you a student, or work. No matter, you will be a success because of your great attitude.

                                                                                       

                                                                                      GoodLuck,

                                                                                      Mary

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                                                                                        himynameiskevin
                                                                                        Participant

                                                                                          I did a little college but I'm not in school. For 5 years I've been a cook/chef at an all organic/vegetarian food store. It's a co-op and a very nice place. I feel lucky to be a part it.

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                                                                                          himynameiskevin
                                                                                          Participant

                                                                                            I did a little college but I'm not in school. For 5 years I've been a cook/chef at an all organic/vegetarian food store. It's a co-op and a very nice place. I feel lucky to be a part it.

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                                                                                          killmel
                                                                                          Participant

                                                                                            Kevin,

                                                                                             

                                                                                            You are an inspiration & have a great attitude.

                                                                                             

                                                                                            I am curious as to what you do: are you a student, or work. No matter, you will be a success because of your great attitude.

                                                                                             

                                                                                            GoodLuck,

                                                                                            Mary

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                                                                                            King
                                                                                            Participant

                                                                                              Kevin,

                                                                                               

                                                                                              You are an amazing guy!  Thanks so much for the update.  I feel sad that there is not someone there with you, that you had to take a cab from the airport, etc.  The internet is great for bringing us all together but the difficult thing is that so many of us live so far away from one another.

                                                                                               

                                                                                              Hang in there.  One day at a time.  Your bride, Brenda, will be there soon!

                                                                                               

                                                                                              Stay Strong
                                                                                              King

                                                                                              Stage IV  7/05 Liver mets

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                                                                                              King
                                                                                              Participant

                                                                                                Kevin,

                                                                                                 

                                                                                                You are an amazing guy!  Thanks so much for the update.  I feel sad that there is not someone there with you, that you had to take a cab from the airport, etc.  The internet is great for bringing us all together but the difficult thing is that so many of us live so far away from one another.

                                                                                                 

                                                                                                Hang in there.  One day at a time.  Your bride, Brenda, will be there soon!

                                                                                                 

                                                                                                Stay Strong
                                                                                                King

                                                                                                Stage IV  7/05 Liver mets

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                                                                                                MaryD
                                                                                                Participant

                                                                                                  You're a trooper Kevin and I really admire your positive attitude through this process.   It's not an easy road, to be sure, but I'm glad you feel like you are in good hands as that makes a world of difference.

                                                                                                  It will be good when Brenda arrives as she will be a great support to you.

                                                                                                  The fight is on and sending good thought and prayers for success!

                                                                                                  Best regards,

                                                                                                  Mary

                                                                                                   

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                                                                                                  MaryD
                                                                                                  Participant

                                                                                                    You're a trooper Kevin and I really admire your positive attitude through this process.   It's not an easy road, to be sure, but I'm glad you feel like you are in good hands as that makes a world of difference.

                                                                                                    It will be good when Brenda arrives as she will be a great support to you.

                                                                                                    The fight is on and sending good thought and prayers for success!

                                                                                                    Best regards,

                                                                                                    Mary

                                                                                                     

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                                                                                                    yensidw
                                                                                                    Participant

                                                                                                      Wishing the best for you. 

                                                                                                      God Bless,

                                                                                                       

                                                                                                      Janis

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                                                                                                      yensidw
                                                                                                      Participant

                                                                                                        Wishing the best for you. 

                                                                                                        God Bless,

                                                                                                         

                                                                                                        Janis

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