› Forums › General Melanoma Community › Checking in from the NIH.
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yensidw.
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- December 6, 2010 at 2:33 pm
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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- December 6, 2010 at 3:43 pm
Praying for you, Kevin!
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- December 6, 2010 at 3:43 pm
Praying for you, Kevin!
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- December 6, 2010 at 4:18 pm
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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- December 6, 2010 at 4:20 pm
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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- December 6, 2010 at 4:20 pm
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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- December 6, 2010 at 4:18 pm
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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- December 6, 2010 at 9:08 pm
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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- December 6, 2010 at 9:08 pm
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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- December 6, 2010 at 9:55 pm
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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- December 6, 2010 at 9:55 pm
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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- December 6, 2010 at 11:59 pm
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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- December 6, 2010 at 11:59 pm
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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- December 7, 2010 at 12:18 am
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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- December 7, 2010 at 12:18 am
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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- December 7, 2010 at 12:44 pm
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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- December 7, 2010 at 12:44 pm
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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- December 7, 2010 at 12:42 am
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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- December 7, 2010 at 12:42 am
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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- December 7, 2010 at 12:17 pm
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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- December 7, 2010 at 12:17 pm
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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- December 7, 2010 at 12:54 am
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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- December 7, 2010 at 12:54 am
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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- December 7, 2010 at 12:28 pm
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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- December 7, 2010 at 7:17 pm
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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- December 7, 2010 at 7:17 pm
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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- December 7, 2010 at 12:28 pm
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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- December 7, 2010 at 12:54 am
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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- December 7, 2010 at 12:54 am
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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- December 7, 2010 at 3:04 am
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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- December 7, 2010 at 3:04 am
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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- December 7, 2010 at 8:02 am
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. -
- December 7, 2010 at 8:02 am
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. -
- December 7, 2010 at 4:04 pm
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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- December 7, 2010 at 7:19 pm
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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- December 7, 2010 at 7:19 pm
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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- December 7, 2010 at 6:08 pm
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
KingStage IV 7/05 Liver mets
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- December 7, 2010 at 6:08 pm
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
KingStage IV 7/05 Liver mets
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- December 7, 2010 at 7:44 pm
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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- December 7, 2010 at 7:44 pm
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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