› Forums › General Melanoma Community › Kevin here, with an NIH ACT update…
- This topic has 28 replies, 13 voices, and was last updated 12 years, 8 months ago by
tricialeigh44.
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- July 30, 2011 at 5:55 am
I realized not too long ago, that I haven't updated on here in some time. So here I am, there's not much to update on. Which in a way is good thing. I went back to the NIH about a month ago for my 6th follow up visit for monthly MRI and CT scans. The scans showed that there's still tumors all over my lungs and that they haven't really gotten any smaller from the previous month maybe a couple percent. If that. But the important thing is that nothing is growing, nothing new is showing and my brain is still clear. So of course, not the result we would all hope for.
I realized not too long ago, that I haven't updated on here in some time. So here I am, there's not much to update on. Which in a way is good thing. I went back to the NIH about a month ago for my 6th follow up visit for monthly MRI and CT scans. The scans showed that there's still tumors all over my lungs and that they haven't really gotten any smaller from the previous month maybe a couple percent. If that. But the important thing is that nothing is growing, nothing new is showing and my brain is still clear. So of course, not the result we would all hope for. But good news and good result nonetheless. They've decided to let me take a two month break this time. And they're going to stop MRIing my brain since that last 10 MRIs show that it's been clear since the one nodule I had eradicated last year with the streaotactic radiation. So I go back August 30th. I don't know what is going to happen, but again, I'll cross that bridge when I get there.
By the way, last week, July 23rd, was exactly one year since my dermatologist gave me the life changing news of "metastatic melanoma". The feelings and thoughts were indescribable, and although I hoped, I didn't imagine being where I am right now. Some IL-2, a little radiation, a bit of surgery, and some adoptive cell therapy has me feeling as physically normal as I ever have. Doing all the same activities I did before, (biking, camping, skydiving, music, swimming, reading, eating, loving, laughing, living). Even though I've still got these undesirables in my lungs, I can't really feel them. I mean sometimes I'll get a random pain. But everyone gets random pain so I don't know. But I'm doing good for the most part. I've done more "living" in the last 8 months then I have in the last…. ..years. I just hope I can say the same next year. I figure, if I can make it one year, well then maybe I can make it another. And then maybe do that again. And possibly again. And again… Next thing you know I'm 80. Oh that'd be nice…
We'll see.Well that's all I've got for now. I'll keep updating time to time.
To everyone I know, and those I don't, I hope you're doing well.
-Kevin
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- July 30, 2011 at 6:27 am
Isn't it great to hit the "Still alive and "healthy" status positiion at the one year point! Know how you feel. Yeah, I've still got those things sitting in my lungs. Come on and join me. In Feb I will hit the 5 year point of hanging at that status. just watch out about horseback riding with slick sole, heel-less shoes!
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- July 30, 2011 at 11:28 am
Hey Kevin,
You're in the same position as me – lung mets, limited growth and no further spread. I just finished and failed 2 rounds of dacarbazine and in 2 weeks start ipi. Like you, I can still do everything I used to be able to do with no limitations. If it wern't for these stupid 15 spots in my lungs, I wouldn't know I have cancer.
It sounds like you're staying positive and enjoying life which is half the battle in all of this. You just have to keep believing that you're going to hit the 5 year mark and with clinical trials, etc, it's possible.
Have you tried ipi (Yervoy)??
Lisa – Stage 4
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- July 30, 2011 at 11:28 am
Hey Kevin,
You're in the same position as me – lung mets, limited growth and no further spread. I just finished and failed 2 rounds of dacarbazine and in 2 weeks start ipi. Like you, I can still do everything I used to be able to do with no limitations. If it wern't for these stupid 15 spots in my lungs, I wouldn't know I have cancer.
It sounds like you're staying positive and enjoying life which is half the battle in all of this. You just have to keep believing that you're going to hit the 5 year mark and with clinical trials, etc, it's possible.
Have you tried ipi (Yervoy)??
Lisa – Stage 4
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- July 30, 2011 at 6:27 am
Isn't it great to hit the "Still alive and "healthy" status positiion at the one year point! Know how you feel. Yeah, I've still got those things sitting in my lungs. Come on and join me. In Feb I will hit the 5 year point of hanging at that status. just watch out about horseback riding with slick sole, heel-less shoes!
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- July 30, 2011 at 2:44 pm
Hi Kevin, thanks for the update, it's always nice to see your posts. Keep on living life to the fullest, it's amazing when the word 'cancer' is mentioned, how much more we appreciate each and every day and all the little things in them. The good news is that you have had no more growth, just maybe it's taking longer for those tumors to shrink. I know you are in good hands at NIH and they will do their utmost in battling with you against this beast. Here most of August, maybe part of September, so perhaps we might bump into each other. Sending loads of good wishes to you and your lovely wife. Val xx
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- July 30, 2011 at 2:44 pm
Hi Kevin, thanks for the update, it's always nice to see your posts. Keep on living life to the fullest, it's amazing when the word 'cancer' is mentioned, how much more we appreciate each and every day and all the little things in them. The good news is that you have had no more growth, just maybe it's taking longer for those tumors to shrink. I know you are in good hands at NIH and they will do their utmost in battling with you against this beast. Here most of August, maybe part of September, so perhaps we might bump into each other. Sending loads of good wishes to you and your lovely wife. Val xx
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- July 31, 2011 at 12:03 am
kevin- i see from your profile that you are in san diego… do you have a good recommendation for a decent derm? i have been having difficulty doing so since my diagnosis in may. im in PB… willing to travel tho for a decent derm. thanks…
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- August 2, 2011 at 7:26 am
Well, I have two reccomendations, First is Dr. Amy Han, she's in Chula Vista/Hillcrest depending on the day I think. She was my derm for a few years, she was the first to diagnose and remove the original melanoma in 2007. She's very nice and informative. And I liked her enough to choose her and pay full price out of pocket, even though I had medical insurance with other "covered" options. Just felt good going there and it was worth it.
Once skin problems came back last year, and I just couldn't afford Dr. Han anymore, I was refferred by my primary and insurance to Dr. Bryan Chen. He, unfrotuently was the one to break the news that the melanoma was back and had metastisized. I've only been to his office a few times. But he's a great guy. I don't know how to explain it on here, but he's done so much for me. Following up and checking on me time to time among other things. He truly cares. And that's what's most important.
I would reccomend either one of them. Both great doctors, and great people. Both worth the drive. And If you do decide to see one, let them know Kevin said hi. I hope this helps..
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- August 2, 2011 at 8:05 pm
thank you very much. it does help. i will look into both of them. i havent had the best communication from the derm ive been seeing. and that lack of communication allowed my overactive imagination to get the best of me. so i appreciate the info from someone w local experience. if i see either of them i will make sure to pass along the greeting. thanks again! i will keep you in my thoughts & "prayers" while you continue your fight…
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- August 2, 2011 at 8:05 pm
thank you very much. it does help. i will look into both of them. i havent had the best communication from the derm ive been seeing. and that lack of communication allowed my overactive imagination to get the best of me. so i appreciate the info from someone w local experience. if i see either of them i will make sure to pass along the greeting. thanks again! i will keep you in my thoughts & "prayers" while you continue your fight…
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- August 2, 2011 at 7:26 am
Well, I have two reccomendations, First is Dr. Amy Han, she's in Chula Vista/Hillcrest depending on the day I think. She was my derm for a few years, she was the first to diagnose and remove the original melanoma in 2007. She's very nice and informative. And I liked her enough to choose her and pay full price out of pocket, even though I had medical insurance with other "covered" options. Just felt good going there and it was worth it.
Once skin problems came back last year, and I just couldn't afford Dr. Han anymore, I was refferred by my primary and insurance to Dr. Bryan Chen. He, unfrotuently was the one to break the news that the melanoma was back and had metastisized. I've only been to his office a few times. But he's a great guy. I don't know how to explain it on here, but he's done so much for me. Following up and checking on me time to time among other things. He truly cares. And that's what's most important.
I would reccomend either one of them. Both great doctors, and great people. Both worth the drive. And If you do decide to see one, let them know Kevin said hi. I hope this helps..
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- July 31, 2011 at 1:46 am
Kevin, thanks for the update. You are doing really well, despite the fact that you
still have some tumours. Having stable disease is a really good outcome, as the growth
and spread of melanoma has ceased. I hope that your health will continue to improve and
that melanoma will no longer slow you down from living life to the fullest.Best wishes
Frank from Australia
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- July 31, 2011 at 1:46 am
Kevin, thanks for the update. You are doing really well, despite the fact that you
still have some tumours. Having stable disease is a really good outcome, as the growth
and spread of melanoma has ceased. I hope that your health will continue to improve and
that melanoma will no longer slow you down from living life to the fullest.Best wishes
Frank from Australia
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- July 31, 2011 at 2:35 am
I'm so glad you posted and updated everybody. I was getting nervous that I didn't see a post, and my husband is going down to Bethesday on Tuesday to see if he can get into the TIL & TBI trial. I love it when people post good news – keep it up!!
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- July 31, 2011 at 11:44 am
Hi Kevin,
Thanks for the update. Sounds like you are doing great and living life and not taking anything for granted. Keep it up…have no regrets.
Vermont_Donna, stage 3a, NED
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- July 31, 2011 at 11:44 am
Hi Kevin,
Thanks for the update. Sounds like you are doing great and living life and not taking anything for granted. Keep it up…have no regrets.
Vermont_Donna, stage 3a, NED
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- August 2, 2011 at 12:09 am
Kevin! Thanks SO much for the update!
keep on livin' it up!
dian in spokane
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- August 2, 2011 at 12:09 am
Kevin! Thanks SO much for the update!
keep on livin' it up!
dian in spokane
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- August 7, 2011 at 12:35 am
Kevin,
I always watch for your posts and hope that you are doing well. You have a wonderful outlook and I wish so earnestly for your complete remission. Keep living and loving …. it's a lot more than some people ever do in their lives! I believe that a positive approach to life can truly add to your healing.
We are soon approaching my teenage son's one year anniversary of his diagnosis. I thank God every day that he is with us and that this insideous disease has not taken him.
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- August 7, 2011 at 12:35 am
Kevin,
I always watch for your posts and hope that you are doing well. You have a wonderful outlook and I wish so earnestly for your complete remission. Keep living and loving …. it's a lot more than some people ever do in their lives! I believe that a positive approach to life can truly add to your healing.
We are soon approaching my teenage son's one year anniversary of his diagnosis. I thank God every day that he is with us and that this insideous disease has not taken him.
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- August 11, 2011 at 5:29 am
Hi Kevin
So happy to hear that you are doing well! We need to catch up!
Tricia
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- August 11, 2011 at 5:29 am
Hi Kevin
So happy to hear that you are doing well! We need to catch up!
Tricia
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