› Forums › General Melanoma Community › Hi everyone.
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jolainajo.
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- November 25, 2010 at 5:05 pm
Sorry for my absence. Been thinking about you all a lot. It's been a pretty busy month… a lot has happened. I'm not sure where I left off but here's an update…
Sorry for my absence. Been thinking about you all a lot. It's been a pretty busy month… a lot has happened. I'm not sure where I left off but here's an update…
Well,exactly one month ago I had my CT scan and two days later I found out that IL-2 was unfortunately not my magic bullet. But, I like to think that since it didn't work on me, I've raised the odds for it working on someone else. So that's good. They did say I may have partially responded due to the slight softness and shrinking I felt on my chest and back, but those ones don't really matter and it's not enough to call for another round. So.. since then…
During that appointment, my doctor had mentioned "adoptive cell therapy" clinical trials, a therapy they offer in Bethesda MD at the National Institute of Health to qualified patients, it was actually the first thing he mentioned months ago but I didn't qualify because my brain lesion, but since then, that's been cleared up, and with 3 months of clear brain MRI (which they require), I might be a good candidate. So him and I made some calls, set up an appointment, and I flew to Washington DC. I got to the NIH, went through security, checked in, got my badge, did all my necessary blood work, urinalysis, chest scan, EKG, all the loops and hoops over the course of the day, and finally met with my possible team of doctors. I was supposed to go home and they'd call me in a week to see if they'd even accept me, but, miraculously, they accepted me then and there, and asked me to stay two extra nights to do a surgery and remove the mass from my back. The next day they wheeled me to the OR, put me to sleep, and I woke up feeling great having that thing off my back. Finally.
By the way, a brief summary of adoptive cell therapy: They remove a tumor or piece of a tumor to extract some natural t-killer cells from it. Then in a lab they see if they can harvest the cells. Usually they can, sometimes they can't. If they see they're growing, they continue to harvest, possibly for many weeks, until they have about 6 billion of them. Then there's a three week procedure where they give them back to you. And then you wait, hope and pray that these t-cells are abundant enough, strong enough and smart enough to recognize the bad stuff and go to town on it.
So back to the update. Less than two weeks after the surgery they called me to tell me that cells were growing. Big relief because if they don't grow.. well then there's no cells. They said they'd call when there were enough for me to come back. And again, miraculously, I got a call two days later saying that my cells are growing phenomely fast (faster than they'd ever seen.) and that looks like I'll be starting the therapy a lot sooner then expected. So I flew back out the next day for prep work, another brain MRI an abdomen MRI and a CT scan of my chest along with more blood work and a long morning of phresis where they took a bunch of white blood cells for 4 hours. Then I flew home with an appointment to come back this Sunday/Monday and start my 3 week therapy on Tuesday.
Tuesday, unfortunately will consist of me starting a week of traditional chemo, not to target the tumors but to kill my immune system, they want it gone so it doesn't effect or "water down" my new immune system. Then on the second Tuesday, they give me my cells back with a week of IL-2, just like IL-2, one bag every 8 hours as long as tolerable. Then the third week is recovery week, getting me back to normal so hopefully I can be home before Christmas. Then as I said, I just wait hope and pray until they call me back and scan me.
So that's that. It's been a long and busy month.
I'll have to browse the past posts and see how you all are doing, but I Hope everyone is doing good, staying positive and enjoying the day off today, hopefully with some good company.
Talk to you soon. -Kevin
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- November 25, 2010 at 5:09 pm
Kevin:
The adoptive therapy approach is expensive and complicated, and most people don't qualify. Those who do tend to do well. So, congratulations on being admitted to this protocol. Hope it goes well with you.
I live in DC, so sometime when you are at NIH we should get together for coffee.
Tim–MRF
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- November 25, 2010 at 5:09 pm
Kevin:
The adoptive therapy approach is expensive and complicated, and most people don't qualify. Those who do tend to do well. So, congratulations on being admitted to this protocol. Hope it goes well with you.
I live in DC, so sometime when you are at NIH we should get together for coffee.
Tim–MRF
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- November 25, 2010 at 6:37 pm
Kevin,
So good to hear from you. All the luck in the world for you & your new "t-cells".
Out of curioisity, were you offered IPI or BRAF as well as NIH t-cell therapy. And if so, why did you not pick IPI or Braf.
Thanks for your input.
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- November 25, 2010 at 7:32 pm
I was offered both. But chose the cell therapy becuase if I'm lucky, it could be a cure. Not sure the exact numbers, I think I remember hearing around 20% cure rate and shows a response in up to 50% of people. I guess I just figured to go for the cure first see what happens. BRAF seems promising though if this doesn't work, especially since they're starting to understand why it eventually stops working and are working on preventing that..
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- November 25, 2010 at 7:32 pm
I was offered both. But chose the cell therapy becuase if I'm lucky, it could be a cure. Not sure the exact numbers, I think I remember hearing around 20% cure rate and shows a response in up to 50% of people. I guess I just figured to go for the cure first see what happens. BRAF seems promising though if this doesn't work, especially since they're starting to understand why it eventually stops working and are working on preventing that..
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- November 25, 2010 at 6:40 pm
Great new Kevin…hoping for the best for you!
Would appreciate you explaining the phresis process. How is does that done???
Happy Thanksgiving
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- November 25, 2010 at 7:41 pm
Thanks, yeah it's about a four hour process for what they needed from me, 10% of my white blood cells. I just lay on a bed with an IV in each arm, the blood is pulled out of one arm through this big machine next to the bed that a nurse is contantly watching and adjusting numbers on. A lot of nobs are spinning and somehow my white blood cells are pulled out into a bag hanging there, and the rest of my blood along with some other fluid to make up for what they've taken, is put back into me through the other arm. No pain other than the prick of two needles. No side or after effects and they say the cells will regenerate themselves to normal in a day or two.
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- November 25, 2010 at 7:41 pm
Thanks, yeah it's about a four hour process for what they needed from me, 10% of my white blood cells. I just lay on a bed with an IV in each arm, the blood is pulled out of one arm through this big machine next to the bed that a nurse is contantly watching and adjusting numbers on. A lot of nobs are spinning and somehow my white blood cells are pulled out into a bag hanging there, and the rest of my blood along with some other fluid to make up for what they've taken, is put back into me through the other arm. No pain other than the prick of two needles. No side or after effects and they say the cells will regenerate themselves to normal in a day or two.
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- November 25, 2010 at 6:45 pm
Wow, hope you are getting frequent flyer miles!
Hope the chemo is not too bad, the adoptive cell therapy sounds promising!
Becky
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- November 25, 2010 at 7:12 pm
Hi Kevin, My daughter went through this trial three years ago when it was still quite new. She then went into a Compassionate Care trial with Ipi. She had scans this week and she has been NED for 2 years now. I spent some of the time with here at NCI and it was a hard trial. But look at what the rewards have been for her. Please stay strong. I hope you have someone to be there with you. I will be sending you positive vibes. Pat
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- November 25, 2010 at 7:12 pm
Hi Kevin, My daughter went through this trial three years ago when it was still quite new. She then went into a Compassionate Care trial with Ipi. She had scans this week and she has been NED for 2 years now. I spent some of the time with here at NCI and it was a hard trial. But look at what the rewards have been for her. Please stay strong. I hope you have someone to be there with you. I will be sending you positive vibes. Pat
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- November 26, 2010 at 12:37 am
Pat,
So happy to hear about your daughter being NED. How old is she??
I am considering IPI compassionate use also. Did your daughter have any side effects from IPI….any side effects that are long term that she still has???
Wish her a life time of NED
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- November 26, 2010 at 12:37 am
Pat,
So happy to hear about your daughter being NED. How old is she??
I am considering IPI compassionate use also. Did your daughter have any side effects from IPI….any side effects that are long term that she still has???
Wish her a life time of NED
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- November 25, 2010 at 7:30 pm
Kevin!
Thanks SO much for taking time to update us. You've given me another thing to be thankful for today.
I am THRILLED to hear that you've qualified for adoptive cell transfer, and that it has moved along so quickly! Amazing really, and I hope that this means that it will work rapidly for you!
I know it must be trying to be having to go through all of this during the holiday season, but I know you are focused.
Happy Thanksgiving! Hope you are getting to spend some great family time this weekend before getting things going at the beginning of the week.
We'll all be thinking of you.
Good Luck,
Dian
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- November 25, 2010 at 7:30 pm
Kevin!
Thanks SO much for taking time to update us. You've given me another thing to be thankful for today.
I am THRILLED to hear that you've qualified for adoptive cell transfer, and that it has moved along so quickly! Amazing really, and I hope that this means that it will work rapidly for you!
I know it must be trying to be having to go through all of this during the holiday season, but I know you are focused.
Happy Thanksgiving! Hope you are getting to spend some great family time this weekend before getting things going at the beginning of the week.
We'll all be thinking of you.
Good Luck,
Dian
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- November 25, 2010 at 10:24 pm
Kevin
You certainly have kept busy this past month. You are going forward with a positive attitude and after reading 'Pat from Ohio's' nformation on her daughter sounds like this might be the magic you so needed. I'm doing the happy dance. Val xx
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- November 25, 2010 at 10:24 pm
Kevin
You certainly have kept busy this past month. You are going forward with a positive attitude and after reading 'Pat from Ohio's' nformation on her daughter sounds like this might be the magic you so needed. I'm doing the happy dance. Val xx
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- November 26, 2010 at 2:25 am
Kevin,
It sounds like overall you've had some really good news with the brain mri still being clear and with your cells growing so quickly.
You continue to have a fantastic attitude and are such a fighter. Sending prayers that you will continue to see much success with this procedure.
Linda
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- November 26, 2010 at 2:25 am
Kevin,
It sounds like overall you've had some really good news with the brain mri still being clear and with your cells growing so quickly.
You continue to have a fantastic attitude and are such a fighter. Sending prayers that you will continue to see much success with this procedure.
Linda
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- November 26, 2010 at 2:37 am
Hi Kevin,
Glad to hear the good news. My husband Bob has been at NIH since he started at Stage III back in 2007. He moved to Stage IV a year later and NIH moved quickly – that's the way they are. We have considered ourselves very fortunate to be with them. As you know these treatments are very expensive. I think you have made a great decision and I pray that it goes well for you.
We are in Northern VA and will be back up in January. We may see you there and will hope you get good news.
Have a great Thanksgiving with your family.
Rebecca
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- November 26, 2010 at 2:37 am
Hi Kevin,
Glad to hear the good news. My husband Bob has been at NIH since he started at Stage III back in 2007. He moved to Stage IV a year later and NIH moved quickly – that's the way they are. We have considered ourselves very fortunate to be with them. As you know these treatments are very expensive. I think you have made a great decision and I pray that it goes well for you.
We are in Northern VA and will be back up in January. We may see you there and will hope you get good news.
Have a great Thanksgiving with your family.
Rebecca
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- November 26, 2010 at 5:39 am
Hi Kevin,
Well, it sounds like everything fell into place very well for you at NIH so hopefully this is a good sign that this treatment will do it's work!
It will be a challenging few weeks but you have a great attitude, feel good about your decision, and have all of us cheering you on.
Wishing you the best and you will be in my thoughts and prayers ..
Mary
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- November 26, 2010 at 5:39 am
Hi Kevin,
Well, it sounds like everything fell into place very well for you at NIH so hopefully this is a good sign that this treatment will do it's work!
It will be a challenging few weeks but you have a great attitude, feel good about your decision, and have all of us cheering you on.
Wishing you the best and you will be in my thoughts and prayers ..
Mary
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- November 27, 2010 at 12:56 am
Salutations! Good to hear from you. A lot of peeps on here sure were "missing" you! Hope the ACT does wonders and glad they "accepted" you. Seems a good choice. As you note, why not "go for a cure" if possible. I'm still mulling over braf (MEK inhibitor), IL-2, Ipi, or maybe even ACT. Probably Braf drug 1st…..get re-scanned next wk. to see if lung tumors have progressed- if so, it's on Braf drug quest; if not, another round of triple chemo to buy time.
Send my reguards to Bethesda-
Love & Best to ALL- Grady Bunch.
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- November 27, 2010 at 2:42 pm
Hi Kevin,
BEST OF LUCK to you with this adoptive cell therapy!!! It sounds like it could really work! You are my new hero!
Prayers for you and your family!
Vermont_Donna
stage 3a
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- November 27, 2010 at 2:42 pm
Hi Kevin,
BEST OF LUCK to you with this adoptive cell therapy!!! It sounds like it could really work! You are my new hero!
Prayers for you and your family!
Vermont_Donna
stage 3a
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- November 27, 2010 at 12:56 am
Salutations! Good to hear from you. A lot of peeps on here sure were "missing" you! Hope the ACT does wonders and glad they "accepted" you. Seems a good choice. As you note, why not "go for a cure" if possible. I'm still mulling over braf (MEK inhibitor), IL-2, Ipi, or maybe even ACT. Probably Braf drug 1st…..get re-scanned next wk. to see if lung tumors have progressed- if so, it's on Braf drug quest; if not, another round of triple chemo to buy time.
Send my reguards to Bethesda-
Love & Best to ALL- Grady Bunch.
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- November 27, 2010 at 9:42 pm
Good luck! I am also interested in ACT, so please keep us posted on your progress.
Isn't it all free if you go to NCI?
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- November 27, 2010 at 9:42 pm
Good luck! I am also interested in ACT, so please keep us posted on your progress.
Isn't it all free if you go to NCI?
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- November 28, 2010 at 12:37 am
Hi Kevin
Wishing you all the luck in the world.
Just our of curiosity could you tell us the cost of treatment at NIH??
Does NIH pay for travel???? Have you been able to afford travel, or have you been able to get travel free through cancer sponsored agencies (ie Angel flight)
Positive Thoughts of NED for you!
Mary
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- November 28, 2010 at 4:09 pm
Hi, yes, you have to pay for the initial flight out there. But if accepted into one of their programs they cover all patient costs except for food and lodging. Unless your being admitted to the hosptial in which case you could eat the hospital food while staying there. But most of the local hotels offer discounts to NIH patients. There is a place called "the safra lodge" on campus specifically there for patients family to stay for free but it's usually booked and is a priority thing so they're likely to be bumped out if staying more than a few days. Also the NIH has free shuttles all day running from two airports and local hotels. What's real nice is there's no copays for anything.. which is nice, because I'm sure we all know how those can build up. 🙂
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- November 28, 2010 at 4:09 pm
Hi, yes, you have to pay for the initial flight out there. But if accepted into one of their programs they cover all patient costs except for food and lodging. Unless your being admitted to the hosptial in which case you could eat the hospital food while staying there. But most of the local hotels offer discounts to NIH patients. There is a place called "the safra lodge" on campus specifically there for patients family to stay for free but it's usually booked and is a priority thing so they're likely to be bumped out if staying more than a few days. Also the NIH has free shuttles all day running from two airports and local hotels. What's real nice is there's no copays for anything.. which is nice, because I'm sure we all know how those can build up. 🙂
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- November 28, 2010 at 12:37 am
Hi Kevin
Wishing you all the luck in the world.
Just our of curiosity could you tell us the cost of treatment at NIH??
Does NIH pay for travel???? Have you been able to afford travel, or have you been able to get travel free through cancer sponsored agencies (ie Angel flight)
Positive Thoughts of NED for you!
Mary
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- November 28, 2010 at 3:20 am
Very happy for you Kevin. Sorry to hear that IL2 didn't work, will say a prayer for you that adoptive cell therapy does. Either way, you have a great attitude and I do think your aggressive approach to hunting down and killing this disease will pay off.
p.s. The Smithsonian in DC is a great place to kill time (lots of different museums) bring good walking shoes as you will likely be on your feet through most of them.
pps. I don't know if expense from San Diego is a major problem for you, but this network will get you there in style and for free if you can plan it right
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- November 28, 2010 at 3:20 am
Very happy for you Kevin. Sorry to hear that IL2 didn't work, will say a prayer for you that adoptive cell therapy does. Either way, you have a great attitude and I do think your aggressive approach to hunting down and killing this disease will pay off.
p.s. The Smithsonian in DC is a great place to kill time (lots of different museums) bring good walking shoes as you will likely be on your feet through most of them.
pps. I don't know if expense from San Diego is a major problem for you, but this network will get you there in style and for free if you can plan it right
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- November 28, 2010 at 4:15 pm
Well I just finished packing and I'll be getting on my plane soon. Hopefully be back before christmas. Unfortunetly, due to jobs/finances my wife can't join me out there until the 15th, but it'll be nice to have her there to help me recover. I hope to give some updates from my room, just not sure how I'll be feeling but as soon as I can, I will.
Thank you all so much for the ongoing supoort and positive vibes/prayers/thoughts. You know how much it means. 🙂
I'll talk to you all soon.
-Kevin
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- November 28, 2010 at 4:15 pm
Well I just finished packing and I'll be getting on my plane soon. Hopefully be back before christmas. Unfortunetly, due to jobs/finances my wife can't join me out there until the 15th, but it'll be nice to have her there to help me recover. I hope to give some updates from my room, just not sure how I'll be feeling but as soon as I can, I will.
Thank you all so much for the ongoing supoort and positive vibes/prayers/thoughts. You know how much it means. 🙂
I'll talk to you all soon.
-Kevin
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- November 29, 2010 at 4:08 am
I went through this trial in Feb of this year at UCLA and was not one of the lucky ones as far as durability of response. Just remember to take it day by day and stay positive. They offerred me a lollipop during the translpant of t-cells and at first I said no…but the taste in my mouth got so bad I accepted and was glad I did..so if they offer you something – take it. Good luck and I can.t wait to hear how great a response you are going to have!
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- November 29, 2010 at 4:08 am
I went through this trial in Feb of this year at UCLA and was not one of the lucky ones as far as durability of response. Just remember to take it day by day and stay positive. They offerred me a lollipop during the translpant of t-cells and at first I said no…but the taste in my mouth got so bad I accepted and was glad I did..so if they offer you something – take it. Good luck and I can.t wait to hear how great a response you are going to have!
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- December 2, 2010 at 3:34 pm
Wishing you all the best, Kevin. Will hold you in my thoughts and will be watching for your next update.
Gwen in Maine
Stage 3c
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- December 2, 2010 at 3:34 pm
Wishing you all the best, Kevin. Will hold you in my thoughts and will be watching for your next update.
Gwen in Maine
Stage 3c
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- December 2, 2010 at 11:38 pm
Hi Kevin, My name is Jolaina, I went through the same thing in june, my Dr. Was Dr. Hong, and the nurses are GREAT! Please if you have a Monica, or a Jessie, Let them know I said hi. THe treatment is hard, very hard, that first week of chemo killed me. I ended up getting 18-5 billion cells, I had response to some of my tumors, but unfortunately I ended up getting brain mets on my second trip back and they took me off protocol. STAY strong!, I think they are on to something and I hope it works for you, I unfortunately have came back home to Michigan and am doing the Ipi trial, well its not unfortunate, because I hope its doing something. I just found out yesterday that my medicaid is going to be cut off and Im not going to have any insurance, well, 500 deductible a month, still dont know about all that, so count yourself lucky you got into NIH and all the diagnostics are free. Well. If you have any questions let me know… Your in my prayers.. Jolaina Walling
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- December 2, 2010 at 11:38 pm
Hi Kevin, My name is Jolaina, I went through the same thing in june, my Dr. Was Dr. Hong, and the nurses are GREAT! Please if you have a Monica, or a Jessie, Let them know I said hi. THe treatment is hard, very hard, that first week of chemo killed me. I ended up getting 18-5 billion cells, I had response to some of my tumors, but unfortunately I ended up getting brain mets on my second trip back and they took me off protocol. STAY strong!, I think they are on to something and I hope it works for you, I unfortunately have came back home to Michigan and am doing the Ipi trial, well its not unfortunate, because I hope its doing something. I just found out yesterday that my medicaid is going to be cut off and Im not going to have any insurance, well, 500 deductible a month, still dont know about all that, so count yourself lucky you got into NIH and all the diagnostics are free. Well. If you have any questions let me know… Your in my prayers.. Jolaina Walling
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