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Home from the NIH.. update.

Forums General Melanoma Community Home from the NIH.. update.

  • Post
    himynameiskevin
    Participant

      Well, I just got back from Maryland two nights ago. The treatment was a bit worse than I had expected… well at times.. It was really rough, but I think I handled it pretty well. Partially from being out there alone and partially because I unfortunately got some sort of stomach bug (somthing I ate) a few hours before I even started the treatment. This is actually what made the treatment tough. If I was feeling well, I bet I would of made it through a lot better and posibbly turned some heads but I was throwing up before they starting dosing me up with the stuff that makes me throw up….

      Well, I just got back from Maryland two nights ago. The treatment was a bit worse than I had expected… well at times.. It was really rough, but I think I handled it pretty well. Partially from being out there alone and partially because I unfortunately got some sort of stomach bug (somthing I ate) a few hours before I even started the treatment. This is actually what made the treatment tough. If I was feeling well, I bet I would of made it through a lot better and posibbly turned some heads but I was throwing up before they starting dosing me up with the stuff that makes me throw up…. The 2 and 5 days of chemotherapy were pretty unpleasant just because of that. I had no appetite, and was really hard to keep food down, but a nice lady from nutrition came to me as well as my Dr and they had many helpful suggesstions as far as the whole eating thing went. Amazingly I only lost about 6-7 pounds and since about 5 days ago my appetite and been better than ever. Weight's probably close to normal again. Anyway on day 7, I got my cells, a total of 51.7 billion. Then I did 7 bags of IL-2. I was really hoping to do a lot more and thought I'd have no problem like here in San Diego but I started getting a lot of fluid in my lungs. (sounded like bubbling water when I would breathe) It was the only side effect I got from the IL-2. The only one. :/ So they stopped me at the 7. I was a little dissapointed about that. I had my mind set at another 14.

      Anyway, at that point I was neutropenic and they spent the rest of the time getting my lungs back to normal, growing bone marrow, keeping fevers down, infections controlled, getting my immune system back and my white blood numbers back to normal. Which they seemed pretty impressed to see came back at an amazingly fast rate. I was actually able to come home 5 days sooner then expected. They actually released me the day Brenda got there.. :/ But because her plane ticket wasn't for 4 days, we had to stay in town for a few days. Then we came home. And here I am now. Sitting in my living room next to Brenda and our first Christmas tree. :) Relaxing. it's weird how laying in a hopsital bed for 2 1/2 weeks can take so much out of you. I did lose some hair, it's kinda thin, everywhere. I buzzed it off and can't really tell if it's coming or going, my eyebrows and eyelashes are pretty snug, if you didn't know me or what was going on you wouldn't even notice. They said my hair will come back soon since the chemo is just a one time thing, but that's the least of more worries at this point. Now just hoping and praying for the best. I go back on Mid-January and once a month for 6 months from what I understand to get scans and see if this stuff is helping me. I hope it does. I feel fine and optimistic and almost every moment of every day I'm in good, happy, normal spirits. On a scale of 1-10, I'm an unabashed 8.9.. But you know, sometimes I'll get a random ache or pain somewhere which is probably nothing, but paranoia will mess with my state of mind and remind me of the seriousness of the situation. :/  But I'm really pretty good. I have this week to relax and get my energy back and on Christmas, Brenda and I are going to drive up to Palm Springs/Indio CA where we'll spend the day with my aunt, uncle, my two cousins and their wife and husband, which will be really nice. They're a group of people who've been the most closely supportive and helpful through all of this and it'll be great to see them. Then next week I'm going to try and pick up some shifts at work and get back into the normal routine of things. And that's it. Just continue to manifest/hope/pray for a positive result…  :)

      I hope everyone on here is doing well. It's good to be back. Merry Happy Christmas Holidays to everyone. And here's to happy healthy New Year to all of us. Cheers.

      -Kevin

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    • Replies
        jag
        Participant

          Kevin, 

          Glad to hear you made it.  It's not easy being on your own like that.  By now it sounds like you have a bionic immune system.  Kill the melanoma cells bionic immune system.  Kill them all. 

           

          Rest up and have fun in palm springs chief.

          Merry Christmas and God Bless you.

           May 2011 be much better than 2010.

          John 

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          jag
          Participant

            Kevin, 

            Glad to hear you made it.  It's not easy being on your own like that.  By now it sounds like you have a bionic immune system.  Kill the melanoma cells bionic immune system.  Kill them all. 

             

            Rest up and have fun in palm springs chief.

            Merry Christmas and God Bless you.

             May 2011 be much better than 2010.

            John 

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            washoegal
            Participant
              Obviously the fact that you are young and otherwise healthy is working in your favor. Here is hoping for a Christmas miracle for you!

              Mary
              Stage 3

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              washoegal
              Participant
                Obviously the fact that you are young and otherwise healthy is working in your favor. Here is hoping for a Christmas miracle for you!

                Mary
                Stage 3

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                stillhopeful
                Participant

                  Thanks for the update!  I may go through the chemo as well, and I am a little scared.  I'm 59, so it may be rougher on me. I was told that I would lose my hair, so I'm glad to hear you still have some.

                  Now that it's over, best of luck becoming NED!  

                  Please keep us posted, and enjoy your family.

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                  stillhopeful
                  Participant

                    Thanks for the update!  I may go through the chemo as well, and I am a little scared.  I'm 59, so it may be rougher on me. I was told that I would lose my hair, so I'm glad to hear you still have some.

                    Now that it's over, best of luck becoming NED!  

                    Please keep us posted, and enjoy your family.

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                    yensidw
                    Participant

                      Have a wonderful holiday.  Here's hoping that this treatment will be your answer.

                      Janis

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                      yensidw
                      Participant

                        Have a wonderful holiday.  Here's hoping that this treatment will be your answer.

                        Janis

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                          Melanoma Mom
                          Participant

                            I've been thinking of you. Thanks for the update.

                            Merry Christmas!

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                            Melanoma Mom
                            Participant

                              I've been thinking of you. Thanks for the update.

                              Merry Christmas!

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                            Erica A
                            Participant

                              It must have been hard to be alone through that treatment, I am sure your attitude helped.  Sounds like you are going to be able to have a nice break and relax for the holidays.  My husband is a Stage IV survivor for 5.5yrs now – original site also on his back – so there is proof for you that there is always reason to hope for the best.

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                              Erica A
                              Participant

                                It must have been hard to be alone through that treatment, I am sure your attitude helped.  Sounds like you are going to be able to have a nice break and relax for the holidays.  My husband is a Stage IV survivor for 5.5yrs now – original site also on his back – so there is proof for you that there is always reason to hope for the best.

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                                  Laurie from maine
                                  Participant

                                    HI,

                                    I have been hoping to see your post and so glad to see that you are home and with your first Christmas tree, nice!  you have been thru a lot – I hope you are able to relax and enjoy the holiday.  ENJOY! 

                                    laurie from maine

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                                    Laurie from maine
                                    Participant

                                      HI,

                                      I have been hoping to see your post and so glad to see that you are home and with your first Christmas tree, nice!  you have been thru a lot – I hope you are able to relax and enjoy the holiday.  ENJOY! 

                                      laurie from maine

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                                    Phil S
                                    Participant

                                      Kevin    Best of luck to you with this treatment, it is very interesting to read about the billions of good/fighter cells they put back into your system.  Here's to great success!    You are in our thoughts and prayers, have a wonderful holiday with your wife.  Valerie (Phil's wife)

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                                      Phil S
                                      Participant

                                        Kevin    Best of luck to you with this treatment, it is very interesting to read about the billions of good/fighter cells they put back into your system.  Here's to great success!    You are in our thoughts and prayers, have a wonderful holiday with your wife.  Valerie (Phil's wife)

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                                        triciad
                                        Participant

                                          Kevin,

                                          You are in my prayers every day!  I sending positive prayers that this treatment will work for you.  Keep up your positive spirit.  Best wishes to you and your wife for a blessed Christmas; the first of many more to come!

                                          Tricia

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                                          triciad
                                          Participant

                                            Kevin,

                                            You are in my prayers every day!  I sending positive prayers that this treatment will work for you.  Keep up your positive spirit.  Best wishes to you and your wife for a blessed Christmas; the first of many more to come!

                                            Tricia

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                                            Jim in Denver
                                            Participant

                                              Kevin:

                                              Your positive spirt is truly amazing and a real inspiration to others.  Thank you so much for posting and sending sincere best wishes for the holiday season and beyond.

                                              Best,

                                              Jim

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                                              Jim in Denver
                                              Participant

                                                Kevin:

                                                Your positive spirt is truly amazing and a real inspiration to others.  Thank you so much for posting and sending sincere best wishes for the holiday season and beyond.

                                                Best,

                                                Jim

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                                                MaryD
                                                Participant

                                                  Congratulations on getting through all that Kevin – you are an amazing trooper!     So happy you are back home just relaxing and getting ready to enjoy the Christmas holiday.

                                                  Sending good thoughts for great results and it's great that you feel well enough to take on some work shifts.

                                                  Enjoy a Merry Christmas!

                                                  Mary

                                                   

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                                                  MaryD
                                                  Participant

                                                    Congratulations on getting through all that Kevin – you are an amazing trooper!     So happy you are back home just relaxing and getting ready to enjoy the Christmas holiday.

                                                    Sending good thoughts for great results and it's great that you feel well enough to take on some work shifts.

                                                    Enjoy a Merry Christmas!

                                                    Mary

                                                     

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                                                    molly
                                                    Participant

                                                      Kevin, so glad you are through with your treatment and home with your wife! Hope you will have a great holiday with family and friends. Thanks for such a great update. I just know that 7 is going to be a lucky number for you!!!

                                                      molly

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                                                      molly
                                                      Participant

                                                        Kevin, so glad you are through with your treatment and home with your wife! Hope you will have a great holiday with family and friends. Thanks for such a great update. I just know that 7 is going to be a lucky number for you!!!

                                                        molly

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                                                        Gwen in Maine
                                                        Participant

                                                          Thanks for the update, Kevin. I've been thinking about you. Have a wonderful holiday and best wishes for the new year.

                                                          Gwen in Maine

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                                                          Gwen in Maine
                                                          Participant

                                                            Thanks for the update, Kevin. I've been thinking about you. Have a wonderful holiday and best wishes for the new year.

                                                            Gwen in Maine

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                                                            Sharyn
                                                            Participant

                                                              Hi Kevin,

                                                              Boy! Soounds like you had a rough go of it, but at least the worst is over now, and you can focus on some fun and relaxation in Palm Springs (I'm jealous!) and enjoying Christmas. Great that you're feeling well enough to return to work soon! That's always a good sign! Wishing you and yours a wonderful Christmas, and hoping for fabulous results in 2011!

                                                              Hugs

                                                              Sharyn, Stage IV

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                                                              Sharyn
                                                              Participant

                                                                Hi Kevin,

                                                                Boy! Soounds like you had a rough go of it, but at least the worst is over now, and you can focus on some fun and relaxation in Palm Springs (I'm jealous!) and enjoying Christmas. Great that you're feeling well enough to return to work soon! That's always a good sign! Wishing you and yours a wonderful Christmas, and hoping for fabulous results in 2011!

                                                                Hugs

                                                                Sharyn, Stage IV

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                                                                dian in spokane
                                                                Participant

                                                                  Kevin, I'm so glad that your stomach bug didn't derail the treatment! And glad you are back at home for the holidays.

                                                                   

                                                                  Keep the faith guy, I have a great feeling that you are gonna KICK melanoma's butt!

                                                                  dian

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                                                                  dian in spokane
                                                                  Participant

                                                                    Kevin, I'm so glad that your stomach bug didn't derail the treatment! And glad you are back at home for the holidays.

                                                                     

                                                                    Keep the faith guy, I have a great feeling that you are gonna KICK melanoma's butt!

                                                                    dian

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                                                                    lhaley
                                                                    Participant

                                                                      Kevin,

                                                                      So glad you were able to get home for the holidays and will be able to enjoy this time together as a married couple!! Wishing you only the best.

                                                                      Linda

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                                                                      lhaley
                                                                      Participant

                                                                        Kevin,

                                                                        So glad you were able to get home for the holidays and will be able to enjoy this time together as a married couple!! Wishing you only the best.

                                                                        Linda

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                                                                        King
                                                                        Participant

                                                                          Kevin,

                                                                           

                                                                          I am always speechless after reading your posts.  Your positive attitude is amazing.  You are an incredible warrior.  It had to be so tough to do something like that alone.  I am thrilled that you and your wife will be spending Christmas with other supportive family members.  I bet you're anxious to get back to work but please listen to your body and give it the rest it needs as well.

                                                                           

                                                                          I'm hoping and praying right along with you.

                                                                           

                                                                          Stay Strong
                                                                          King

                                                                          Stage IV 7/05 Liver mets

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                                                                          King
                                                                          Participant

                                                                            Kevin,

                                                                             

                                                                            I am always speechless after reading your posts.  Your positive attitude is amazing.  You are an incredible warrior.  It had to be so tough to do something like that alone.  I am thrilled that you and your wife will be spending Christmas with other supportive family members.  I bet you're anxious to get back to work but please listen to your body and give it the rest it needs as well.

                                                                             

                                                                            I'm hoping and praying right along with you.

                                                                             

                                                                            Stay Strong
                                                                            King

                                                                            Stage IV 7/05 Liver mets

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