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John...
...I'm so sorry to hear about that awful news! NO clinical trials at all???? It's hard to believe they don't have trials for people who have more then 1 primary cancers??? I am shocked as you are to hear this news and saddened, and hope that person is wrong, and maybe there would be someone else to talk too about this?
Please hold your head high and don't lose that hope! I hope that person is wrong, and hope you don't give up on this, so much different meds and sicknesses come out every day, you would think there would be something out there for you now! Can you talk to someone else about this???
Hugsss!
~Donna0 -
Don't give up HOPE
John, Sorry someone delivered such devastating news. But how do they know you will NEVER qualify for a clinical trial? People can be so insensitive and there is no way she knows every trial out there and what you would or would not qualify for. Don't give up hope. Keep searching and keep fighting. I do hate that when you have certain conditions, you are ruled out for most things, as my sister has mets to her liver and peritoneum, which seems to be a deal breaker for HIPEC and liver resection. This disease is a monster and someone needs to pay attention to all of us fighting! All my prayers to you. Marie0 -
John
John
That's devastating new alright - I was hoping that you would lead the way and show other ways to get this done.
Perhaps it's just a setback.
With options immediately eliminated, I can understand how you might be feeling now. When one starts to think they only have one weapon available, then things can get a little scary for sure.
You are a tough guy though - if anyone can hang in there, it is you. I will continue to hope that your "weapon" works for as long as it takes to get an answer for you.
Wish I knew something else to say, but I'm a little speechless right now
-Craig0 -
Believe!
John, please do not let this discourage you. Keep positive thoughts and keep fighting. Read and communicate. You will be heard.0 -
JOHNSundanceh said:John
John
That's devastating new alright - I was hoping that you would lead the way and show other ways to get this done.
Perhaps it's just a setback.
With options immediately eliminated, I can understand how you might be feeling now. When one starts to think they only have one weapon available, then things can get a little scary for sure.
You are a tough guy though - if anyone can hang in there, it is you. I will continue to hope that your "weapon" works for as long as it takes to get an answer for you.
Wish I knew something else to say, but I'm a little speechless right now
-Craig
You are 1 of the 3 men on here that get my undivided attention. Why???? Because you bust ur rear doing research for yourself and others. You do your homework.... you WILL find a answer. I have lots of faith in you John.... YOU keep the faith as well.
Jennie0 -
I'm OKlizzydavis said:Believe!
John, please do not let this discourage you. Keep positive thoughts and keep fighting. Read and communicate. You will be heard.
I haven't given up all hope. This embolization is a very good thing. Most folks with colon cancer die from liver failure. If I can't get mine clean with embolization or RFA I should still have plenty of time. Hopefully, I can get any new mets taken care of as soon as their found. I just know that I have two small mets that can't be surgically removed without permanently removing the left side of my liver. Plus, all those neat treatments popping up everyday have much less significance to me. I'll still research them for you guys but I can't say it will be with the same diligence.
There isn't much new to worry about. I haven't had any chemo in three months and my disease was stable according to my CT last week. I will start folfox with avastin next week, I'll probably get 3 treatments then have the remaining tumors in my lungs and liver taken care of. Then I'll get back on the chemo for a little longer then have my hepectomy. Any new mets will be dealt with accordingly. If I stopped all treatment today, I and my Dr feel like I still have a year or so in me. I have no intentions of stopping my treatment so, barring any setbacks, I should be around for a little longer. I'm cool with that!0 -
Hi John,I am really sorry tosnommintj said:I'm OK
I haven't given up all hope. This embolization is a very good thing. Most folks with colon cancer die from liver failure. If I can't get mine clean with embolization or RFA I should still have plenty of time. Hopefully, I can get any new mets taken care of as soon as their found. I just know that I have two small mets that can't be surgically removed without permanently removing the left side of my liver. Plus, all those neat treatments popping up everyday have much less significance to me. I'll still research them for you guys but I can't say it will be with the same diligence.
There isn't much new to worry about. I haven't had any chemo in three months and my disease was stable according to my CT last week. I will start folfox with avastin next week, I'll probably get 3 treatments then have the remaining tumors in my lungs and liver taken care of. Then I'll get back on the chemo for a little longer then have my hepectomy. Any new mets will be dealt with accordingly. If I stopped all treatment today, I and my Dr feel like I still have a year or so in me. I have no intentions of stopping my treatment so, barring any setbacks, I should be around for a little longer. I'm cool with that!
Hi John,I am really sorry to hear that the clinical trial denied you.I read another stage 4 semi-colon's blog a couple of days ago.He is Taiwanese. He is looking for second,third and forth opinions in the top medical schools in different universities.He just went to the Johns hopkins University for consultant,he found out that they are having a phase II clinical trial which is using a so called "target medicine" to stop cancer cells division.This "target medicine" only marks on cancer cells and stops them dividing.This is totally different from traditional chemo.This is very interesting and sophisticated.I just want to let you know there are lots of information around.If you want,you can contact with other oncologists and experts.You know,more and more efficient and effective medicines are coming out in the next couple of years.Please stay positive and optimistic,there is always hope.Some universities have clinical trials all year around.I think you shouldn't just listen to one opinion,if this clinical trial doesn't fit you,others may fit.You can still look for other opinions.Take care.0 -
Top DogFight for my love said:Hi John,I am really sorry to
Hi John,I am really sorry to hear that the clinical trial denied you.I read another stage 4 semi-colon's blog a couple of days ago.He is Taiwanese. He is looking for second,third and forth opinions in the top medical schools in different universities.He just went to the Johns hopkins University for consultant,he found out that they are having a phase II clinical trial which is using a so called "target medicine" to stop cancer cells division.This "target medicine" only marks on cancer cells and stops them dividing.This is totally different from traditional chemo.This is very interesting and sophisticated.I just want to let you know there are lots of information around.If you want,you can contact with other oncologists and experts.You know,more and more efficient and effective medicines are coming out in the next couple of years.Please stay positive and optimistic,there is always hope.Some universities have clinical trials all year around.I think you shouldn't just listen to one opinion,if this clinical trial doesn't fit you,others may fit.You can still look for other opinions.Take care.
The lady I spoke with on the phone today is the person that must authorize any patient that enters clinical trials after the folks that sign you do all their homework. She is the head honcho. Without her approval you don't get a clinical trial at the NIH. She told me why I was excluded and why I would be excluded from other trials. She says she doesn't think there has been or will be a clinical trial that allows patients with multiple primary cancers.0 -
Top DogFight for my love said:Hi John,I am really sorry to
Hi John,I am really sorry to hear that the clinical trial denied you.I read another stage 4 semi-colon's blog a couple of days ago.He is Taiwanese. He is looking for second,third and forth opinions in the top medical schools in different universities.He just went to the Johns hopkins University for consultant,he found out that they are having a phase II clinical trial which is using a so called "target medicine" to stop cancer cells division.This "target medicine" only marks on cancer cells and stops them dividing.This is totally different from traditional chemo.This is very interesting and sophisticated.I just want to let you know there are lots of information around.If you want,you can contact with other oncologists and experts.You know,more and more efficient and effective medicines are coming out in the next couple of years.Please stay positive and optimistic,there is always hope.Some universities have clinical trials all year around.I think you shouldn't just listen to one opinion,if this clinical trial doesn't fit you,others may fit.You can still look for other opinions.Take care.
The lady I spoke with on the phone today is the person that must authorize any patient that enters clinical trials after the folks that sign you do all their homework. She is the head honcho. Without her approval you don't get a clinical trial at the NIH. She told me why I was excluded and why I would be excluded from other trials. She says she doesn't think there has been or will be a clinical trial that allows patients with multiple primary cancers.0 -
It's understandable.Usuallysnommintj said:Top Dog
The lady I spoke with on the phone today is the person that must authorize any patient that enters clinical trials after the folks that sign you do all their homework. She is the head honcho. Without her approval you don't get a clinical trial at the NIH. She told me why I was excluded and why I would be excluded from other trials. She says she doesn't think there has been or will be a clinical trial that allows patients with multiple primary cancers.
It's understandable.Usually the clinical trial only looks for specific type of things.Anyway,John,hold on,there is always hope.0 -
Damn it
Not what anyone would want to hear. But you never know there may be something come up. I hope so. I look forward to reading your posts too because they give me so much info and hope. You have been through so much. I know you won't give up and we won't give up on you either.
Someone some where maybe working on something that you will be able to take part in.
I don't have cancer my husband does I have MS and it is advanced and I have been on trials for that. I only have one more drug that has been approved to go on if the one I am on now stops working. It is a awful feeling. My thoughts are with you John.0 -
John..........Paula G. said:Damn it
Not what anyone would want to hear. But you never know there may be something come up. I hope so. I look forward to reading your posts too because they give me so much info and hope. You have been through so much. I know you won't give up and we won't give up on you either.
Someone some where maybe working on something that you will be able to take part in.
I don't have cancer my husband does I have MS and it is advanced and I have been on trials for that. I only have one more drug that has been approved to go on if the one I am on now stops working. It is a awful feeling. My thoughts are with you John.
You know as well as I do that there isn't but one head honcho and its not her...You keep shoving and pushing. I know if anyone can get where they wanna be its you. Its not the dog in the fight bud, its the fight in the dog...I have faith that you will come out on top of this.......Bless ya bud, Clift0 -
Hi
Hi John, I am sorry to hear your news. Remember they are always coming out with new trials. Please try not to be discouraged, I know it's hard. We are all here for you and sounds like you already have people on this site doing some homework for you! Keep your chin up!!!
Karyn0 -
Could be Worse...
You say "Having only one option in this mess is the last place I wanted to be."
I would think that having NO options is the last place you'd want to be. You do have the one tool. I knew someone who ran out of tools. When I felt things were not going well or I had yet another surgery coming up, she'd put me in my place by telling me that at least I had an options, she didn't. The wonderful person who would "slap me out of it" was Jana Miller. You never know what's in the pipeline.
-p
I still miss Jana0 -
Hi John
I think you live in South Carolina, right.
The University of North Carolina Comprehensive Cancer Center just opened their brand new center over the latter part of the summer and have 3 pretty large areas just for clinical trials and are ramping up as quickly as they can. You may want to check them out to see if there is anything of interest. It is a public hospital and takes all insurances but is also on the list of the 40 plus comprehensive cancer centers.
Their website is: www.unclineberger.org/ct
A contact for phase 1 clinical trials is Kimberly Keller, kimberly_keller@med.unc.edu or Teresa Nuttall, teresa_nuttal@med.unc.edu
The contact for GI cancer is Lynna Woods, lwoods@med.unc.edu or Levette Hairston, levette_hairston@med.unc.edu
I don't know if they can help you but it's worth a try especially with the brand new space and it not being completely full YET.
Lisa P.0 -
Sorry to hear it John.
That is tough news. I hope something else comes up for you. I know the feeling of a setback. It starts with a "wallup" and a "let down", then moves through to an "Oh well!", then on to a "what next?" and finally to a "new and hopeful plan".
I hope you find a plan and a path that makes the most out of this latest.
Rob; in Van0 -
I'm sorry to hear they got
I'm sorry to hear they got your hopes up and then denied you. I am new here and don't know your full story, but I was already told that I couldn't be accepted into a trial if I had another primary cancer that hadn't been NED for at least 5 years. It has been just 5 years from my cervical cancer NED (after battling it for over 3 years), till my colon cancer dx, so I would qualify, as long as the pap I just had done comes back clear.
I've read a lot of replies here saying there are lots of other trials, but as far as I know the chances of there being a clinical trial that includes more than one primary cancer are very low, unless the they come up with a treatment that they want to try across the board on any cancer, regardless of the type. Clinical trials have tough guidelines for who is in so they can keep out as many variables as possible. Understandable, but maddening all the same, if there is a treatment you can only get in a trial, and you really want it.
Keep up with what you know works for you in the meantime, and then what has proven to work in trials will be available for you. (Although sometimes you have to go to another country to get it, if ours is too slow to authorize the use.)
On a much smaller scale than your situation, my oncologist (who pushed me to go for a clinical trial) told me Friday that we should just move forward with starting my chemo and forget applying for the trial. They are tough about guidelines, and now that it is uncertain if I am stage IIIc or stage IV, I would probably be rejected anyway. So I can kind of understand your frustation, but not completely, as I haven't been through all that you have.
You are in my prayers - hang in there with the treatments you know work to keep it under control, until you can try something new.0 -
I think no matter where youscouty said:Hi John
I think you live in South Carolina, right.
The University of North Carolina Comprehensive Cancer Center just opened their brand new center over the latter part of the summer and have 3 pretty large areas just for clinical trials and are ramping up as quickly as they can. You may want to check them out to see if there is anything of interest. It is a public hospital and takes all insurances but is also on the list of the 40 plus comprehensive cancer centers.
Their website is: www.unclineberger.org/ct
A contact for phase 1 clinical trials is Kimberly Keller, kimberly_keller@med.unc.edu or Teresa Nuttall, teresa_nuttal@med.unc.edu
The contact for GI cancer is Lynna Woods, lwoods@med.unc.edu or Levette Hairston, levette_hairston@med.unc.edu
I don't know if they can help you but it's worth a try especially with the brand new space and it not being completely full YET.
Lisa P.
I think no matter where you go for a trial, the clearinghouse (NIH) is all the same. And the rule is 5 years NED for any other type of cancer before you can get on a trial for a different cancer.
Lousy, but understandable, to keep the variables down and get more accurate results. It sucks for people that could benefit that don't meet the criteria though.0 -
keep the hope
Hi John,
That's lousy news- I'm so sorry. It's very maddening that they supposedly knew this info about you and then got your hopes up that this could work for you, just to disappoint you now. I'm sorry you've experienced this.
As tough as it is, you know you've got to keep the faith and hope that the Folfox and Avastin will work on you. Maybe there will still be something that comes up for you.
Take care and God bless-
Lisa0
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