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- This topic has 33 replies, 7 voices, and was last updated 9 years, 10 months ago by
BrianP.
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- May 11, 2016 at 6:14 pm
So blood test came back positive for HLA-A2 which got me an appt at Loyola to discuss the Adoptive Immunotheraphy Trial. I was under impression that it was TIL but apparently it's different. Anyone really know key differences? The trial investigator explained that T Cells come out of blood vs. tumor. I have some other questions I'm waiting for a response for but please chime in. My current oncologist thinks this is great option and can show promising results. I'd just like to know that since it's not TIL, do they remove tumor? Is there chemo involved? All questions I guess that will be answered next Thursday.
In the meantime, I've been considering looking at some of the things that Celeste, Ed and Gary have thrown out there. Trying to sort everything out in my head, get through each day while holding onto hope. I know there's many out there who have been in a bad place and are still here doing well. I just want to be there with you…it's what I want for all of us. Blessings to you all!!!
Josh
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- May 11, 2016 at 7:06 pm
Hey Josh,
Glad to hear you are charging forward with some great options. I have a very simple understanding of TIL vs. CAR therapy. In TIL therapy they harvest the killer cells from the tumor. Again my "basic" understanding is they have found in many tumors there are some killer cells that have infiltrated the tumor but there just aren't enough of them to do any good. What's good about these killer cells in the tumor is at least they were able to recognize the tumor as bad and were trying to do something about it whereas the rest of the killer cells floating around were sleeping on the job. They extract these "good" killer cells from the tumor and then harvest them into billions and reintroduce them into the patient.
The difference with CAR is they are just taking your normal killer cells from your blood and modifying them with an antigen receptor that will hopefully stick to the antigen that your cancer is presenting. Pretty amazing stuff!
Most of the CAR articles I read were pretty technical and tough to follow but this one does a pretty good job.
Good luck going forward. You've gotten some great info from Celeste, Ed, and others that I too need to take a look at also.
Brian
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- May 11, 2016 at 7:06 pm
Hey Josh,
Glad to hear you are charging forward with some great options. I have a very simple understanding of TIL vs. CAR therapy. In TIL therapy they harvest the killer cells from the tumor. Again my "basic" understanding is they have found in many tumors there are some killer cells that have infiltrated the tumor but there just aren't enough of them to do any good. What's good about these killer cells in the tumor is at least they were able to recognize the tumor as bad and were trying to do something about it whereas the rest of the killer cells floating around were sleeping on the job. They extract these "good" killer cells from the tumor and then harvest them into billions and reintroduce them into the patient.
The difference with CAR is they are just taking your normal killer cells from your blood and modifying them with an antigen receptor that will hopefully stick to the antigen that your cancer is presenting. Pretty amazing stuff!
Most of the CAR articles I read were pretty technical and tough to follow but this one does a pretty good job.
Good luck going forward. You've gotten some great info from Celeste, Ed, and others that I too need to take a look at also.
Brian
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- May 12, 2016 at 1:14 pm
Great explanantion and article. Any data on CAR for melanoma? Read in article that acute leukemia patients had great response. Just curious if anything on melanoma….researched a bit last night but tired and overwhelmed. Thanks Brian…appreciate you sharing!!!!
Josh
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- May 12, 2016 at 1:14 pm
Great explanantion and article. Any data on CAR for melanoma? Read in article that acute leukemia patients had great response. Just curious if anything on melanoma….researched a bit last night but tired and overwhelmed. Thanks Brian…appreciate you sharing!!!!
Josh
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- May 13, 2016 at 3:05 pm
Josh,
I haven't found much but here's a brief abstract that gives a little insight into the early phase I/II results:
http://clincancerres.aacrjournals.org/content/early/2016/03/22/1078-0432.CCR-15-1879.abstract
I discoverd a new way to google search that gives some good results but many of the articles need to be paid for or you have to register to view them. Hopefully this link will direct you to that page.
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- May 13, 2016 at 3:05 pm
Josh,
I haven't found much but here's a brief abstract that gives a little insight into the early phase I/II results:
http://clincancerres.aacrjournals.org/content/early/2016/03/22/1078-0432.CCR-15-1879.abstract
I discoverd a new way to google search that gives some good results but many of the articles need to be paid for or you have to register to view them. Hopefully this link will direct you to that page.
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- May 13, 2016 at 3:05 pm
Josh,
I haven't found much but here's a brief abstract that gives a little insight into the early phase I/II results:
http://clincancerres.aacrjournals.org/content/early/2016/03/22/1078-0432.CCR-15-1879.abstract
I discoverd a new way to google search that gives some good results but many of the articles need to be paid for or you have to register to view them. Hopefully this link will direct you to that page.
-
- May 12, 2016 at 1:14 pm
Great explanantion and article. Any data on CAR for melanoma? Read in article that acute leukemia patients had great response. Just curious if anything on melanoma….researched a bit last night but tired and overwhelmed. Thanks Brian…appreciate you sharing!!!!
Josh
-
- May 11, 2016 at 7:06 pm
Hey Josh,
Glad to hear you are charging forward with some great options. I have a very simple understanding of TIL vs. CAR therapy. In TIL therapy they harvest the killer cells from the tumor. Again my "basic" understanding is they have found in many tumors there are some killer cells that have infiltrated the tumor but there just aren't enough of them to do any good. What's good about these killer cells in the tumor is at least they were able to recognize the tumor as bad and were trying to do something about it whereas the rest of the killer cells floating around were sleeping on the job. They extract these "good" killer cells from the tumor and then harvest them into billions and reintroduce them into the patient.
The difference with CAR is they are just taking your normal killer cells from your blood and modifying them with an antigen receptor that will hopefully stick to the antigen that your cancer is presenting. Pretty amazing stuff!
Most of the CAR articles I read were pretty technical and tough to follow but this one does a pretty good job.
Good luck going forward. You've gotten some great info from Celeste, Ed, and others that I too need to take a look at also.
Brian
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- May 11, 2016 at 7:56 pm
Hi Josh,
While I don't have anything intelligent to add regarding treatment, I have to say your attitude is exactly where we all need to be. You are an inspiration to others who feel desperate, and losing hope. We need to listen to our specialists, do our own homework, and be our own best advocates for health care decisions. And we must not lose sight that the next big breakthrough in treatment is right around the corner. Do what you must do now, to at least give yourself a shot at the next big thing. Life and treatment, are not mutually exclusive. Do what you have to do in regards to deciding how to move forward with treatment, and keep on living life in the meantime.
Aloha, Gary
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- May 11, 2016 at 7:56 pm
Hi Josh,
While I don't have anything intelligent to add regarding treatment, I have to say your attitude is exactly where we all need to be. You are an inspiration to others who feel desperate, and losing hope. We need to listen to our specialists, do our own homework, and be our own best advocates for health care decisions. And we must not lose sight that the next big breakthrough in treatment is right around the corner. Do what you must do now, to at least give yourself a shot at the next big thing. Life and treatment, are not mutually exclusive. Do what you have to do in regards to deciding how to move forward with treatment, and keep on living life in the meantime.
Aloha, Gary
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- May 12, 2016 at 1:22 pm
Appreciate kind words Gary. I'd have to admit though that I'm broken but fight to keep it together. I have young kids and wife that I need to be around for so I lean heavily on my faith and the support I have around me to drive forward. Yes, we have to be aggressive in our own care. I've heard from many people here that we have to advocate for ourselves. Not to mention the rocks in here(youknow who you are 🙂 ) who graciously share info. Best to you Gary!!!
Josh
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- May 12, 2016 at 1:22 pm
Appreciate kind words Gary. I'd have to admit though that I'm broken but fight to keep it together. I have young kids and wife that I need to be around for so I lean heavily on my faith and the support I have around me to drive forward. Yes, we have to be aggressive in our own care. I've heard from many people here that we have to advocate for ourselves. Not to mention the rocks in here(youknow who you are 🙂 ) who graciously share info. Best to you Gary!!!
Josh
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- May 12, 2016 at 1:22 pm
Appreciate kind words Gary. I'd have to admit though that I'm broken but fight to keep it together. I have young kids and wife that I need to be around for so I lean heavily on my faith and the support I have around me to drive forward. Yes, we have to be aggressive in our own care. I've heard from many people here that we have to advocate for ourselves. Not to mention the rocks in here(youknow who you are 🙂 ) who graciously share info. Best to you Gary!!!
Josh
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- May 11, 2016 at 7:56 pm
Hi Josh,
While I don't have anything intelligent to add regarding treatment, I have to say your attitude is exactly where we all need to be. You are an inspiration to others who feel desperate, and losing hope. We need to listen to our specialists, do our own homework, and be our own best advocates for health care decisions. And we must not lose sight that the next big breakthrough in treatment is right around the corner. Do what you must do now, to at least give yourself a shot at the next big thing. Life and treatment, are not mutually exclusive. Do what you have to do in regards to deciding how to move forward with treatment, and keep on living life in the meantime.
Aloha, Gary
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- May 12, 2016 at 1:49 am
Josh, for what it's worth, MDA offered me this treatment when I visited with them after failing Keytruda. Cassian Yee is the lead researcher/investigator there–the MDA trial added ipi to the procedure. I did not have the correct HLA type, however. Sloan also tested my HLA type, likely for this trial or something similar. We never discussed the exact trial because of my typing. My understanding is consistent with Brian's explanation. No tumor harvest. They get what they need through your blood.
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- May 12, 2016 at 1:49 am
Josh, for what it's worth, MDA offered me this treatment when I visited with them after failing Keytruda. Cassian Yee is the lead researcher/investigator there–the MDA trial added ipi to the procedure. I did not have the correct HLA type, however. Sloan also tested my HLA type, likely for this trial or something similar. We never discussed the exact trial because of my typing. My understanding is consistent with Brian's explanation. No tumor harvest. They get what they need through your blood.
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- May 12, 2016 at 9:50 am
Josh,
I know this is a tough decision, but you have very good choices. Each time my husband had to change direction, I always told him it was entirely his decision. I think that's very important. Review the choices and go with your gut. Keep fighting warrior!! You can do this!
Maureen
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- May 12, 2016 at 9:50 am
Josh,
I know this is a tough decision, but you have very good choices. Each time my husband had to change direction, I always told him it was entirely his decision. I think that's very important. Review the choices and go with your gut. Keep fighting warrior!! You can do this!
Maureen
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- May 12, 2016 at 9:50 am
Josh,
I know this is a tough decision, but you have very good choices. Each time my husband had to change direction, I always told him it was entirely his decision. I think that's very important. Review the choices and go with your gut. Keep fighting warrior!! You can do this!
Maureen
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- May 12, 2016 at 3:57 pm
Josh, while my primary institution is UPenn, I've visited Sloan (Wolchok) when changing treatments and I visited MDA (Davies) when I was looking at TIL as part of changing treatments (Hwu doesn't seem to see new patients). Both Sloan and MDA have a lot to offer in terms of trials that don't seem to be generally available elsewhere. So, yes, I would recommend both at the appropriate time. While I've consulted with Sloan (an easy train ride for me) since the beginning of my treatment, I didn't travel to MDA until I had already failed several treatments and was specifically looking at TIL (and MDA is less restrictive than NIH for TIL). I wouldn't hesitate to return to either if I need to.
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- May 12, 2016 at 3:57 pm
Josh, while my primary institution is UPenn, I've visited Sloan (Wolchok) when changing treatments and I visited MDA (Davies) when I was looking at TIL as part of changing treatments (Hwu doesn't seem to see new patients). Both Sloan and MDA have a lot to offer in terms of trials that don't seem to be generally available elsewhere. So, yes, I would recommend both at the appropriate time. While I've consulted with Sloan (an easy train ride for me) since the beginning of my treatment, I didn't travel to MDA until I had already failed several treatments and was specifically looking at TIL (and MDA is less restrictive than NIH for TIL). I wouldn't hesitate to return to either if I need to.
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- May 12, 2016 at 3:57 pm
Josh, while my primary institution is UPenn, I've visited Sloan (Wolchok) when changing treatments and I visited MDA (Davies) when I was looking at TIL as part of changing treatments (Hwu doesn't seem to see new patients). Both Sloan and MDA have a lot to offer in terms of trials that don't seem to be generally available elsewhere. So, yes, I would recommend both at the appropriate time. While I've consulted with Sloan (an easy train ride for me) since the beginning of my treatment, I didn't travel to MDA until I had already failed several treatments and was specifically looking at TIL (and MDA is less restrictive than NIH for TIL). I wouldn't hesitate to return to either if I need to.
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- May 12, 2016 at 1:49 am
Josh, for what it's worth, MDA offered me this treatment when I visited with them after failing Keytruda. Cassian Yee is the lead researcher/investigator there–the MDA trial added ipi to the procedure. I did not have the correct HLA type, however. Sloan also tested my HLA type, likely for this trial or something similar. We never discussed the exact trial because of my typing. My understanding is consistent with Brian's explanation. No tumor harvest. They get what they need through your blood.
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- May 12, 2016 at 2:19 pm
I'm glad your HLA typing came out such that this trial is an option for you. All your questions should be answered when you have your appointment….but you've gotten some good intel here! You are looking at the new 'state of the art' version of TIL! Less invasive, more dependable way to harvest T-cells with modifications to make them even better! Of course, being on the cutting edge makes you one hell of a rattie…..going where few have gone before! So ask a TON of questions of the doc! Anything you want to know no matter how 'silly'or 'insignificant'….cause it's not! Take a list of questions you know already you want answered so they won't be forgotten in the course of the meeting.
As far as whether your tumor will be removed….I can't tell from what the study descriptor the clinical trials has. Many studies require "measureable disease" so that it can be used as a marker for response. As best as I can tell from the same source, they will just use low dose IL2 in addition to the infusion of T-cells….but again, I can't be certain. (Like I said in my TIL post….TIL is complicated and comes in many shapes and sizes!)
Hang in there. Ask away! It may take a village…but you got this! C
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- May 12, 2016 at 2:19 pm
I'm glad your HLA typing came out such that this trial is an option for you. All your questions should be answered when you have your appointment….but you've gotten some good intel here! You are looking at the new 'state of the art' version of TIL! Less invasive, more dependable way to harvest T-cells with modifications to make them even better! Of course, being on the cutting edge makes you one hell of a rattie…..going where few have gone before! So ask a TON of questions of the doc! Anything you want to know no matter how 'silly'or 'insignificant'….cause it's not! Take a list of questions you know already you want answered so they won't be forgotten in the course of the meeting.
As far as whether your tumor will be removed….I can't tell from what the study descriptor the clinical trials has. Many studies require "measureable disease" so that it can be used as a marker for response. As best as I can tell from the same source, they will just use low dose IL2 in addition to the infusion of T-cells….but again, I can't be certain. (Like I said in my TIL post….TIL is complicated and comes in many shapes and sizes!)
Hang in there. Ask away! It may take a village…but you got this! C
-
- May 12, 2016 at 2:19 pm
I'm glad your HLA typing came out such that this trial is an option for you. All your questions should be answered when you have your appointment….but you've gotten some good intel here! You are looking at the new 'state of the art' version of TIL! Less invasive, more dependable way to harvest T-cells with modifications to make them even better! Of course, being on the cutting edge makes you one hell of a rattie…..going where few have gone before! So ask a TON of questions of the doc! Anything you want to know no matter how 'silly'or 'insignificant'….cause it's not! Take a list of questions you know already you want answered so they won't be forgotten in the course of the meeting.
As far as whether your tumor will be removed….I can't tell from what the study descriptor the clinical trials has. Many studies require "measureable disease" so that it can be used as a marker for response. As best as I can tell from the same source, they will just use low dose IL2 in addition to the infusion of T-cells….but again, I can't be certain. (Like I said in my TIL post….TIL is complicated and comes in many shapes and sizes!)
Hang in there. Ask away! It may take a village…but you got this! C
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- May 12, 2016 at 6:35 pm
Hey Josh. Everyone is right, your attitude is great. Keep on keeping on.
I switched my care from Mayo Clinic to MDA a year ago. It was the best decision of my life (besides marrying my husband). I see Dr. Isabella Glitza. When I first started she presented my case to the entire melanoma team. I went on the (then trial) ipi/nivo combination therapy. I did have a tumor harvested in case I ever need TIL; however, I'm a CR to the combo, so let's hope they keep ghe cells.
The fact that MDA had TIL was one read I chose to go there. Once I got there, it felt right. I love Dr. Glitza (and my husband has a little crush on her). I appreciate that the entire team of doctors discussed my case. I also value the amount of research going on at this institution and the doors that opens if I ever progress.
Getting in was the same process as always – get referrals if you need them for insurance, have the paperwork sent, wait for them to get everything before they'll actually schedule an appointment. After that, it's easy. I fly from North Dakota to Texas every 10-12 weeks. I believe I'll do that for another year, and then may cut it down to every 6 months…fingers crossed.
If you end up going to MDA and want more tips, let me know!
Best of luck,
Ashley
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- May 12, 2016 at 6:35 pm
Hey Josh. Everyone is right, your attitude is great. Keep on keeping on.
I switched my care from Mayo Clinic to MDA a year ago. It was the best decision of my life (besides marrying my husband). I see Dr. Isabella Glitza. When I first started she presented my case to the entire melanoma team. I went on the (then trial) ipi/nivo combination therapy. I did have a tumor harvested in case I ever need TIL; however, I'm a CR to the combo, so let's hope they keep ghe cells.
The fact that MDA had TIL was one read I chose to go there. Once I got there, it felt right. I love Dr. Glitza (and my husband has a little crush on her). I appreciate that the entire team of doctors discussed my case. I also value the amount of research going on at this institution and the doors that opens if I ever progress.
Getting in was the same process as always – get referrals if you need them for insurance, have the paperwork sent, wait for them to get everything before they'll actually schedule an appointment. After that, it's easy. I fly from North Dakota to Texas every 10-12 weeks. I believe I'll do that for another year, and then may cut it down to every 6 months…fingers crossed.
If you end up going to MDA and want more tips, let me know!
Best of luck,
Ashley
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- May 12, 2016 at 6:35 pm
Hey Josh. Everyone is right, your attitude is great. Keep on keeping on.
I switched my care from Mayo Clinic to MDA a year ago. It was the best decision of my life (besides marrying my husband). I see Dr. Isabella Glitza. When I first started she presented my case to the entire melanoma team. I went on the (then trial) ipi/nivo combination therapy. I did have a tumor harvested in case I ever need TIL; however, I'm a CR to the combo, so let's hope they keep ghe cells.
The fact that MDA had TIL was one read I chose to go there. Once I got there, it felt right. I love Dr. Glitza (and my husband has a little crush on her). I appreciate that the entire team of doctors discussed my case. I also value the amount of research going on at this institution and the doors that opens if I ever progress.
Getting in was the same process as always – get referrals if you need them for insurance, have the paperwork sent, wait for them to get everything before they'll actually schedule an appointment. After that, it's easy. I fly from North Dakota to Texas every 10-12 weeks. I believe I'll do that for another year, and then may cut it down to every 6 months…fingers crossed.
If you end up going to MDA and want more tips, let me know!
Best of luck,
Ashley
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