› Forums › General Melanoma Community › Almost there…..
- This topic has 24 replies, 8 voices, and was last updated 12 years, 1 month ago by
Ali.
- Post
-
- December 6, 2012 at 7:36 pm
Hi everyone,
It has been awhile since I've updated my status here but I figured I should share my continued good results from my NIH TIL treatment.
Just to recap – I completed the randomized TIL trial at NIH in late May of 2012. I randomized to the non-radiation arm of the study. I had my 4th follow-up visit last week and all of my tumors have shown remarkable response thus far.
Hi everyone,
It has been awhile since I've updated my status here but I figured I should share my continued good results from my NIH TIL treatment.
Just to recap – I completed the randomized TIL trial at NIH in late May of 2012. I randomized to the non-radiation arm of the study. I had my 4th follow-up visit last week and all of my tumors have shown remarkable response thus far.
The scans showed that over 90% of the total tumor volume is gone. All that remains is a smudge of the big tumor in my right lung (maybe just scar) and a spot in my femur that hasn't really changed much in over 1.5yrs of watching it. Two more of the tumors they've been following are no longer seen. Bye-Bye suckers….
The other good news is (the physicians have never said this to me before)… They said that they've found if they can get all of the cancer to go away with this treatment – it usually stays away! Of course, no guarantees but I'll take any reassuring words.
I go back in another 2 months for studies and scans and am looking forward to spreading these trips out even farther.
My family has so much to celebrate this year. When I was first diagnosed as Stage 4 my wife was 7 months pregnant and my little girl turns 3 next week. I am lucky!Happy holidays to you all and may 2013 be one filled with positive results for this community.Troy
- Replies
-
-
- December 7, 2012 at 1:24 am
Way to go ! Good for you – and so glad for the GOOD NEWS ! KEEP ON KEEPING ON………
-
- December 7, 2012 at 1:24 am
Way to go ! Good for you – and so glad for the GOOD NEWS ! KEEP ON KEEPING ON………
-
- December 7, 2012 at 1:24 am
Way to go ! Good for you – and so glad for the GOOD NEWS ! KEEP ON KEEPING ON………
-
- December 7, 2012 at 7:16 am
Hi Troy,
Well first of all HAPPY BIRTHDAY to the little one! Secondly CONGRATS on such an awesome response.
I don't know too much about Til treatment but I've heard of it. Do they use this on people with numerous tumors? Is this FDA approved treatment? I will have to do some research. Always interested in anything that is working for others.
Denise
-
- December 7, 2012 at 5:28 pm
Denise,
Thanks for the reply. I'll give you a short version of TIL treatment or Adoptive Cell Therapy – please ask your MD if it is something they might consider for you.
I believe TIL treatments are still only classified as trials and done only at NIH and MD Anderson right now in the US (as well as some international sites starting up programs UK, Netherlands, Israel that I've heard of). Moffitt used to do it but I recall reading that they had to stop due to funding issues.
Basically, it is a challenging treatment regimen where they harvest tumors from you then isolate "tumor infiltrating lymphocytes" (TIL cells) from the tumor directly. They can multiply those cells in the lab to the 10-100 billions and then give the cells back to you after essentially killing off your current immune system. The idea is to "retrain" and "recharge" your immune system to recognize and kill the melanoma cells. The goal is long term, durable responses. You'll see response rates reported ranging from 20-70% based on the type of lymphodepletion used.
That is a short version – there are many articles out there that better describe it. NIH is doing several variations on this process in an attempt to better understand why some people respond completely while others may not. They are also doing one trial combining cell therapy with vemurafenib.
All the best to you – Troy
-
- December 7, 2012 at 5:28 pm
Denise,
Thanks for the reply. I'll give you a short version of TIL treatment or Adoptive Cell Therapy – please ask your MD if it is something they might consider for you.
I believe TIL treatments are still only classified as trials and done only at NIH and MD Anderson right now in the US (as well as some international sites starting up programs UK, Netherlands, Israel that I've heard of). Moffitt used to do it but I recall reading that they had to stop due to funding issues.
Basically, it is a challenging treatment regimen where they harvest tumors from you then isolate "tumor infiltrating lymphocytes" (TIL cells) from the tumor directly. They can multiply those cells in the lab to the 10-100 billions and then give the cells back to you after essentially killing off your current immune system. The idea is to "retrain" and "recharge" your immune system to recognize and kill the melanoma cells. The goal is long term, durable responses. You'll see response rates reported ranging from 20-70% based on the type of lymphodepletion used.
That is a short version – there are many articles out there that better describe it. NIH is doing several variations on this process in an attempt to better understand why some people respond completely while others may not. They are also doing one trial combining cell therapy with vemurafenib.
All the best to you – Troy
-
- December 7, 2012 at 5:28 pm
Denise,
Thanks for the reply. I'll give you a short version of TIL treatment or Adoptive Cell Therapy – please ask your MD if it is something they might consider for you.
I believe TIL treatments are still only classified as trials and done only at NIH and MD Anderson right now in the US (as well as some international sites starting up programs UK, Netherlands, Israel that I've heard of). Moffitt used to do it but I recall reading that they had to stop due to funding issues.
Basically, it is a challenging treatment regimen where they harvest tumors from you then isolate "tumor infiltrating lymphocytes" (TIL cells) from the tumor directly. They can multiply those cells in the lab to the 10-100 billions and then give the cells back to you after essentially killing off your current immune system. The idea is to "retrain" and "recharge" your immune system to recognize and kill the melanoma cells. The goal is long term, durable responses. You'll see response rates reported ranging from 20-70% based on the type of lymphodepletion used.
That is a short version – there are many articles out there that better describe it. NIH is doing several variations on this process in an attempt to better understand why some people respond completely while others may not. They are also doing one trial combining cell therapy with vemurafenib.
All the best to you – Troy
-
- December 7, 2012 at 7:16 am
Hi Troy,
Well first of all HAPPY BIRTHDAY to the little one! Secondly CONGRATS on such an awesome response.
I don't know too much about Til treatment but I've heard of it. Do they use this on people with numerous tumors? Is this FDA approved treatment? I will have to do some research. Always interested in anything that is working for others.
Denise
-
- December 7, 2012 at 7:16 am
Hi Troy,
Well first of all HAPPY BIRTHDAY to the little one! Secondly CONGRATS on such an awesome response.
I don't know too much about Til treatment but I've heard of it. Do they use this on people with numerous tumors? Is this FDA approved treatment? I will have to do some research. Always interested in anything that is working for others.
Denise
-
- You must be logged in to reply to this topic.