› Forums › General Melanoma Community › TIL screening at NIH – my experience
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DZnDef.
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- August 11, 2015 at 1:20 am
Last Thursday I was at NIH in Bethesda for TIL screening. Before going we already did a blood kit and biopsy testing. I had no antigens they wanted so the other trials were a no go.Also had to be at least 14 days off nivo PD1 so last Thursday was 16 days so 2 days overdue for nivolumab.Not sure how much folks might be interested in so I'll try to include a lot of my experience.Basically pretty much everyone was nice.If driving you want to go to the patient entrance. Security checks the car in my case a rental and you go inside where they check your stuff then give you a day pass badge.Just a short little turn from there to the main entrance where dad dropped mom and I off. He parked in P1. Not sure much about that.Lots of walking required but you can avoid all the steps. If you have to be in a wheel chair that disqualifies you immediately for TIL. My cane did not disqualify me. I ended up walking all over that place that day. Not easy but suprisingly I did it.First stop after the men's room was admissions. They should have sent you a map of the interior of the building ahead of time. If not it's on their website. Basically they have you sign in and give you something to read then they call your number. Then another lady brings you back to make sure all your demographic stuff is right and things.Next was supposed to be Clinical. That's on the 3rd floor. But it was 7:30 when I was supposed to get my blood work and they said no one would be in until 8 so back to the first floor we went.Blood work was the now typical sign in and wait for your number to be called. I guess I was nervous trying to get everything done on time and one of the patients who had been going there for years said NIH stands for Not In A Hurry. So I felt better. Then they call your number and lead you back to in my case the guys cube. As he was checking all the tests and putting labels on the tubes he noticed a urine test. So did that and back. By then he had all 12 tubes ready. Sheesh. I was used to 2 or 3. 12 was like when I was first diagnosed over 2 years ago. So yes you got to be in decent health for this. Went fine and the small bump is almost gone after 4 days.Now back up to Clinical. This is where the lady I've talked to works and the nurses and doctors that are part of the TIL. They did the usual weight, height, bp, oxygen, pulse, temp thing. Met the head nurse that has 4 that do the clinical. Met one of those. Signed the trial papers. Not the papers for TIL but the papers for evaluation of being accepted into TIL is a trial apparently. If everything was done could also have new patient orientation at 10:30 or afternoon if wanted or talk to a social worker for financial aid and anything else that concerned me.Next back to first floor for head MRI. Got to the place that the sign above the lady's head says CT/MRI Reception. Said I was there for my 8:30 head MRI. She looked at her papers and said she didn't have me until 9:30. I said they said 8:30. She said well they sometimes do that because of the contrast. She said I had no contrast for the MRI but I do for the CT. Here's papers to fill out and have a seat. So I turn the papers in and wait thinking she knows what she's doing. At 9:15 another lady gives me contrast to drink. Parents go to cafeteria. At 9:30 they bring me back to change into scrubs. Not easy to change my shoes on a bench by myself but I somehow did it. Then another lady that does the IV. She said I was here for my CT and I was like yes but I was also here for an 8:30 head MRI. She took me to the real MRI reception. From the other one that was through a door, down a hall, around a corner and through another door. They said I had no MRI scheduled. So back for the IV and did the CT with more contrast in my IV. Went back to the CT/MRI reception lady and questioned about the 8:30 MRI. She said that was at 8:30. I said I know I talked to you at 8:30. So back to the real MRI reception and they said they would call me if they get an opening.My parents are still in the cafeteria so I'm in scrubs with no phone, bill fold or anything except a bag with my street cloths.So off I go to the EKG area. That was a quick take me into a room and lay down and wait. Finally some rest. They gave me the EKG paper saying to take it back to radiology.So back to radiology but I didn't want to talk to the CT/MRI lady so I asked the chest x-ray lady that the EKG person said to bring this paper to them. Her eyes get big and says no no. If you want a chest x-ray she can do that. So that was on the list too so a simple stand in front of machine. Then turn and hold on to a couple straps and both xrays done.Finally everything done except head MRI. Parents not back and it is about 11am. So up to 2nd floor cafeteria and no parents so back to radiology and they just got there so back up again to cafeteria. It is ran by Eurest. Same that used to be where I used to work. Same food and tastes the same. Not that great in my opinion but I was hungry and exhausted.Back to Clinical at 12:30. Wait until sometime after 1 and they take me back to an examination room. Gave the head nurse I met in the morning the paper she had given me to fill out plus the EKG paper report. Also mentioned the head MRI issue so she got on it right away. Said it was scheduled for the next morning which wouldn't work too good since we fly out the next day. So she got it set for 4 pm.The next folks that came in the examination room are to check my veins. Because if I'm accepted the next visit is surgery. But 2 days before surgery these ladies hook you up to a machine for 4 hours. The needles they use are way bigger than the normal cancer needles I'm used to. This machine filters your blood so they can have something to put the surgery tcells in to help them grow. They check your veins with a blood pressure cuff and visually looking at them.Next came in the lady I've been talking to on the phone pretty much every week since early May. First talked to her last November.Next folks that came in was a doctor. He spent most of his morning looking through all my records. He went over my treatment history. Had me explain the cane which is more of a crutch because I don't want to fall. But like I said last winter I had to have it. He checked me out a little physically and I think asked some more questions and answered ours. He was confident I was physically ok for the treatment.Next that doc and a senior doc came in. She was focused on which tumor to remove to get the best cells. Like she said they do not do major surgery because the patient cannot recover enough to do the treatment. So reading between the lines in my opinion this is something they've learned from the poor folks who didn't make it through the treatment. For my best cells would be the tumors in the fat of my kidneys but that would be major surgery so a no. Also major treatment would be the one in my skull pressing on my brain so no. They would not consider the one deep in my leg because they do not want to risk jeopordizing my already problematic walking. Now the huge one in my shoulder might have been minor surgery which is the only type of surgery they will do. But since was mostly necrotic it would not give the cells they want. Last is the super clavical tumor would be minor surgery. She felt it and it wasn't as loose as she would like but they could do it. It is also big enough because it has to be at least 2 centimeters. But it is smaller than it used to be. In my opinion it is smaller because of last winter's radiation and maybe the pd1. But since it is smaller they believe it is responding to treatment thus a no. Like she said they could get tcells but if they are going to put me through such a treatment they want to make sure they get the best cells. So again reading between the lines I think that is one reason I picked up why they have better response they only go for the best cells. Probably also something they've learned from the folks that have gone before. So no tumors to harvest so she said they would make the final decision monday when they all get together but at that point she believed it would be a no. They said the first doc would call me around 1pm monday after their meeting.So back to the 1st floor real MRI reception. Signed in and they verified I already had an IV and scrubs. Waited and took 2 tylenol and went in. Typical remove glasses and leave cane. The typical small tube but at least they blow cool air in this one. Most of them get so hot I burn up so that was nice. Did the first part of the scan fine. They put the contrast in and the guy no sooner got to sit back down when I say I'm choking. I had felt a metalic taste in the back of my throat which I vaguely remember from a couple years ago they said is normal. So I swallow and all of the sudden fluid is in my throat that is too much to swallow and I'm choking. He says he's coming right in. As he's coming in he asks how I'm doing. By then I have so much fluid in my throat I can't talk so I just squeeze the ball. He says he's hurrying. Then the fluid starts filling my nasal passages so I can't breathe at all. Seems like a long time but total it was probably only 10 seconds from me saying I was choking. That guy was fast. Probably another miracle the scheduling got messed up so he was there to be fast for me. He then had me out and my back propped up going to put me on a strecther. Once I was propped up I guess it was gravity because all the fluid just rushed down. I kept my mouth closed otherwise I probably would have made a mess. So at least now I can breathe I'm just coughing and gagging as they wheel me into the corridor. Suddenly a gazillion medical people are around. They check me out and see my face and upper chest are flushed so they give me benedryl. They page the first doc that I had saw a little while ago. They are trying to decide what to do. Whether to keep me in the hospital over night or what. But since I seemed ok they started talking about finishing the scan. The tech said there was 12 minutes left but it turned out to be 18. Since my parents saw all those medical folks running they thought it was for me although there was at least a half dozen or so other people back there. They were very worried so some medical people talked to them and when I was ok they had them come see me so they knew I was ok and went back. They checked me out some more and cleared me as being ok and to never have magnavist mri contrast again. So the tech brought me to the men's room and I could see my face was still a little red. Then I got back into the tube and finished the scan.They wheeled me in a wheel chair to the main entrance. Then we waited for dad to get the car and left. What a fun day. lolSo today. Monday at 4pm their time I called the first doc and he confirmed it was a no. But if that one in my super clavical ever grows they want to know about it.So I got a message out to my Chicago doc waiting to hear if he has an opening in any of his good trials.Also called my Saint Louis doc where I'm at and already got setup to get back on my PD1 tomorrow afternoon. So only 1 week late.Thinking about that trial Celeste mentioned about Keytruda plus some inhibitor pills. Also thinking about that trial Catherine posted about Keytruda plus daily IL10 injections. Also thinking about going to MSK or MDA. Especially since the t10 ablation and cement it seems I can fly some granted there was almost no turbulence and very soft landings. Certainly going to have to pray for what to do next.So that's it. Maybe some tidbit in there will help somebody sometime. I dunno.Artie
- Replies
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- August 11, 2015 at 2:45 am
May be of interest about TIL… see http://melanomamom.blogspot.com/
Best wishes to you.
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- August 11, 2015 at 2:45 am
May be of interest about TIL… see http://melanomamom.blogspot.com/
Best wishes to you.
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- August 11, 2015 at 2:45 am
May be of interest about TIL… see http://melanomamom.blogspot.com/
Best wishes to you.
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- August 11, 2015 at 2:50 am
One thing I forgot to mention the doc talked about the rest of the treatment. The chemo for immune system depletion varies greatly. Some patients tolerate it so well that early on while they still have a system they go sight seeing for a couple days. Others not so well so they have to stay.
Also the Il2 is to tolerance. He was talking about a lot of side affects that usually occur. Once they see the signs of it they stop the Il2. Again reading between the lines in my opinion probably something they learned from the folks that came before.
Artie
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- August 11, 2015 at 6:11 am
Thanks for you very informative post. The business of checking for good tumors to harvest is illuminating. It should almost be in the first paragraph of any info they publish for prospective patients. It sounds like everything derives from that possibility.
I understand that "to tolerance" is the case for standalone high-dose IL2. Most people never get to the full number of posslbe bags per cycle (14? 16? I forget). The most I tolerated was 11. The least was 4.Looking for/getting into the next clinical trial is almost like a full-time job. Good luck on your hunt.– Kyle -
- August 11, 2015 at 6:11 am
Thanks for you very informative post. The business of checking for good tumors to harvest is illuminating. It should almost be in the first paragraph of any info they publish for prospective patients. It sounds like everything derives from that possibility.
I understand that "to tolerance" is the case for standalone high-dose IL2. Most people never get to the full number of posslbe bags per cycle (14? 16? I forget). The most I tolerated was 11. The least was 4.Looking for/getting into the next clinical trial is almost like a full-time job. Good luck on your hunt.– Kyle -
- August 11, 2015 at 6:11 am
Thanks for you very informative post. The business of checking for good tumors to harvest is illuminating. It should almost be in the first paragraph of any info they publish for prospective patients. It sounds like everything derives from that possibility.
I understand that "to tolerance" is the case for standalone high-dose IL2. Most people never get to the full number of posslbe bags per cycle (14? 16? I forget). The most I tolerated was 11. The least was 4.Looking for/getting into the next clinical trial is almost like a full-time job. Good luck on your hunt.– Kyle -
- August 12, 2015 at 6:44 pm
Another thing about NIH I thought was good is the little card the docs give you. Every other place I've been which is only 4 others the phone number is for their office. There the phone number is to the doc. I only called the doc once but he answered. I was really surprised.
Artie
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- August 12, 2015 at 6:44 pm
Another thing about NIH I thought was good is the little card the docs give you. Every other place I've been which is only 4 others the phone number is for their office. There the phone number is to the doc. I only called the doc once but he answered. I was really surprised.
Artie
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- August 12, 2015 at 6:44 pm
Another thing about NIH I thought was good is the little card the docs give you. Every other place I've been which is only 4 others the phone number is for their office. There the phone number is to the doc. I only called the doc once but he answered. I was really surprised.
Artie
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- August 11, 2015 at 2:50 am
One thing I forgot to mention the doc talked about the rest of the treatment. The chemo for immune system depletion varies greatly. Some patients tolerate it so well that early on while they still have a system they go sight seeing for a couple days. Others not so well so they have to stay.
Also the Il2 is to tolerance. He was talking about a lot of side affects that usually occur. Once they see the signs of it they stop the Il2. Again reading between the lines in my opinion probably something they learned from the folks that came before.
Artie
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- August 11, 2015 at 2:50 am
One thing I forgot to mention the doc talked about the rest of the treatment. The chemo for immune system depletion varies greatly. Some patients tolerate it so well that early on while they still have a system they go sight seeing for a couple days. Others not so well so they have to stay.
Also the Il2 is to tolerance. He was talking about a lot of side affects that usually occur. Once they see the signs of it they stop the Il2. Again reading between the lines in my opinion probably something they learned from the folks that came before.
Artie
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- August 11, 2015 at 3:32 am
Oh, Artie! That is one hell-uv-a-day(s)!!!! You are so awesome!! I am so sorry that you were not admitted to the program. CRAP! [and…gotta say…ANON…what the heck???!!!…why are you pushing a blog that no one has published anything on in a year to someone..who…at this point is NOT doing that treatment….seriously!??? Who are you anyway??? ANON?????] Sorry, Artie. Sometimes, I just can't help myself.
Yes. The sentiment already mentioned…is a common lament. NIH has the best TIL results because they only take folks who can still run a marathon….and is that REALLY the folks who most need it.?? Anyhow….onwards and upwards….
Keep us all posted on what is next for you and how you are feeling. I'll keep thinking. As I know many smarter folks around here will keep doing, too.
We love you, Artie. Hang in there. You are our hero. Love, c
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- August 11, 2015 at 3:51 am
You are amazing . Looking forward to many more stories of your adventures in the system. You are incredibly strong.'Marianne
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- August 11, 2015 at 3:51 am
You are amazing . Looking forward to many more stories of your adventures in the system. You are incredibly strong.'Marianne
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- August 11, 2015 at 3:51 am
You are amazing . Looking forward to many more stories of your adventures in the system. You are incredibly strong.'Marianne
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- August 11, 2015 at 4:00 am
Good luck Artie……….I don't know you but feel I know you. You are so brave, I would have smacked that one MRI lady…..smack. You are amazing.
I do have questions about anonymous posting, I am not sure why people don't share who they are….learning everyones stories has help me tremendously. I never thought I would be on this site, but you all inspire me.
Good happy health to everyone, double dose!
Rita
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- August 11, 2015 at 5:49 pm
Sometimes I post anonymously and then sign my name at the end! go figure. That was not me up above, but I too enjoy when people sign their names, even though I am guilty of absent-minded anonymous posting at times myself. There is a form at work with a box that needs to be checked like that before submitted and I think it's just habit.
Artie, thanks for such an informative post. I had no idea finding studies was so much work, and will be hoping a good one comes up for you soon!
Cheri
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- August 11, 2015 at 5:49 pm
Sometimes I post anonymously and then sign my name at the end! go figure. That was not me up above, but I too enjoy when people sign their names, even though I am guilty of absent-minded anonymous posting at times myself. There is a form at work with a box that needs to be checked like that before submitted and I think it's just habit.
Artie, thanks for such an informative post. I had no idea finding studies was so much work, and will be hoping a good one comes up for you soon!
Cheri
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- August 11, 2015 at 5:49 pm
Sometimes I post anonymously and then sign my name at the end! go figure. That was not me up above, but I too enjoy when people sign their names, even though I am guilty of absent-minded anonymous posting at times myself. There is a form at work with a box that needs to be checked like that before submitted and I think it's just habit.
Artie, thanks for such an informative post. I had no idea finding studies was so much work, and will be hoping a good one comes up for you soon!
Cheri
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- August 11, 2015 at 4:00 am
Good luck Artie……….I don't know you but feel I know you. You are so brave, I would have smacked that one MRI lady…..smack. You are amazing.
I do have questions about anonymous posting, I am not sure why people don't share who they are….learning everyones stories has help me tremendously. I never thought I would be on this site, but you all inspire me.
Good happy health to everyone, double dose!
Rita
-
- August 11, 2015 at 4:00 am
Good luck Artie……….I don't know you but feel I know you. You are so brave, I would have smacked that one MRI lady…..smack. You are amazing.
I do have questions about anonymous posting, I am not sure why people don't share who they are….learning everyones stories has help me tremendously. I never thought I would be on this site, but you all inspire me.
Good happy health to everyone, double dose!
Rita
-
- August 11, 2015 at 3:32 am
Oh, Artie! That is one hell-uv-a-day(s)!!!! You are so awesome!! I am so sorry that you were not admitted to the program. CRAP! [and…gotta say…ANON…what the heck???!!!…why are you pushing a blog that no one has published anything on in a year to someone..who…at this point is NOT doing that treatment….seriously!??? Who are you anyway??? ANON?????] Sorry, Artie. Sometimes, I just can't help myself.
Yes. The sentiment already mentioned…is a common lament. NIH has the best TIL results because they only take folks who can still run a marathon….and is that REALLY the folks who most need it.?? Anyhow….onwards and upwards….
Keep us all posted on what is next for you and how you are feeling. I'll keep thinking. As I know many smarter folks around here will keep doing, too.
We love you, Artie. Hang in there. You are our hero. Love, c
-
- August 11, 2015 at 3:32 am
Oh, Artie! That is one hell-uv-a-day(s)!!!! You are so awesome!! I am so sorry that you were not admitted to the program. CRAP! [and…gotta say…ANON…what the heck???!!!…why are you pushing a blog that no one has published anything on in a year to someone..who…at this point is NOT doing that treatment….seriously!??? Who are you anyway??? ANON?????] Sorry, Artie. Sometimes, I just can't help myself.
Yes. The sentiment already mentioned…is a common lament. NIH has the best TIL results because they only take folks who can still run a marathon….and is that REALLY the folks who most need it.?? Anyhow….onwards and upwards….
Keep us all posted on what is next for you and how you are feeling. I'll keep thinking. As I know many smarter folks around here will keep doing, too.
We love you, Artie. Hang in there. You are our hero. Love, c
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- August 11, 2015 at 4:07 pm
Artie,
Thanks for such a detailed description. I have had a lot of curiosity of til and this explains a bunch for me. It is something that has crossed my mind if it was worth trying while i am still very healthy. Lots of difference in opinions on this treatment. You will find something to get started with i hope. Thanks again,
Jamie -
- August 11, 2015 at 4:07 pm
Artie,
Thanks for such a detailed description. I have had a lot of curiosity of til and this explains a bunch for me. It is something that has crossed my mind if it was worth trying while i am still very healthy. Lots of difference in opinions on this treatment. You will find something to get started with i hope. Thanks again,
Jamie-
- August 11, 2015 at 8:18 pm
Once again, I have to say that you amaze me Artie! Your resilience , your fighting spirit and your attitude are so admirable !!!! I'm saying prayers that you can find some trial that will beat this. Keep fighting!!
maureeen
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- August 11, 2015 at 8:18 pm
Once again, I have to say that you amaze me Artie! Your resilience , your fighting spirit and your attitude are so admirable !!!! I'm saying prayers that you can find some trial that will beat this. Keep fighting!!
maureeen
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- August 11, 2015 at 8:18 pm
Once again, I have to say that you amaze me Artie! Your resilience , your fighting spirit and your attitude are so admirable !!!! I'm saying prayers that you can find some trial that will beat this. Keep fighting!!
maureeen
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- August 11, 2015 at 4:07 pm
Artie,
Thanks for such a detailed description. I have had a lot of curiosity of til and this explains a bunch for me. It is something that has crossed my mind if it was worth trying while i am still very healthy. Lots of difference in opinions on this treatment. You will find something to get started with i hope. Thanks again,
Jamie -
- August 12, 2015 at 12:32 am
Artie, I'm so sorry TIL is a no-go for you! And I pray you find something that WILL work for you! As many have mentioned, you are an amazingly strong man who continues to inspire me everyday. I wish you the best, Artie!
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- August 12, 2015 at 12:32 am
Artie, I'm so sorry TIL is a no-go for you! And I pray you find something that WILL work for you! As many have mentioned, you are an amazingly strong man who continues to inspire me everyday. I wish you the best, Artie!
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- August 12, 2015 at 12:32 am
Artie, I'm so sorry TIL is a no-go for you! And I pray you find something that WILL work for you! As many have mentioned, you are an amazingly strong man who continues to inspire me everyday. I wish you the best, Artie!
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