› Forums › General Melanoma Community › Clinical Trial Question
- This topic has 36 replies, 7 voices, and was last updated 9 years, 2 months ago by
amelanomajourney.
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- February 21, 2015 at 5:58 pm
Hello all,
I am currently T1bN1a (stage 3b) and feeling really well. My SNLB / WLE was July 10th. I see my dermatologist every three months and the oncologist every three months, so I'm under somebody's watchful eye every six weeks. I feel like my anxiety is under control, and I'm finally able to focus on diet, exercise, and being proactive about my health. I am in a good place and in good hands, but like many melanoma patients, I wonder if I could be doing more.
I did not have the lymph node dissection or interferon after my one node came back slightly positive. I am treated at Loyola in Chicago and I have been seen by Dr. Postow at Memorial Sloan Kettering.
My question is this: If / when a clinical trial becomes available for which a patient might qualify, does their doctor point that out to them, or do patients have to keep their eyes out for trials? I am the kind of person who would like to help move the science forward, especially if I can be useful in some way…but I do understand that trials involve exposing oneself to risk. Am I supposed to be agressive, or wait until I "need" a trial?
I see that there is a vaccine trial (NCT02129075) at MSK that I might qualify for. Since I'm a patient at MSK, would you expect a doctor to contact me? How is this handled?
If you are of a mind to tell me to sit tight and don't worry about clinical trials until one is necessary, I welcome that kind of feedback. I just know that I've learned quite a bit from this site, and I know NOTHING about trials.
Thanks in advance. Best,
Elaine
- Replies
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- February 21, 2015 at 6:36 pm
Hi Elaine,
Good question! I am also being treated at MSKCC and I took part in a trial. I believe I let my oncologist know I would be interested in any information regarding clinical trials. As it turned out there was one available. I would let the oncologist know that you would like,to see the protocol and perhaps be considered as a participant.
Regards,
Stan
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- February 21, 2015 at 6:36 pm
Hi Elaine,
Good question! I am also being treated at MSKCC and I took part in a trial. I believe I let my oncologist know I would be interested in any information regarding clinical trials. As it turned out there was one available. I would let the oncologist know that you would like,to see the protocol and perhaps be considered as a participant.
Regards,
Stan
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- February 21, 2015 at 6:36 pm
Hi Elaine,
Good question! I am also being treated at MSKCC and I took part in a trial. I believe I let my oncologist know I would be interested in any information regarding clinical trials. As it turned out there was one available. I would let the oncologist know that you would like,to see the protocol and perhaps be considered as a participant.
Regards,
Stan
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- February 21, 2015 at 6:37 pm
Hello Elaine,
My husband started out at Stage IIIb and his SNB came back negative so he chose watch and wait.
He did have 4 more surgeries and was offered interferon several times which he refused. He then did advance to Stave IV but his doctor told him about a clinical trial to see if he could get into that was local but not offered at the hospital he was at. He failed it as he had to many lesions in his liver. So we went back to his oncologist and he recommended we do a clinical trial that was open there. Also his oncologist has always told us that he thinks we could do Plan B, Plan C and Plan D if Plan A didn't work. So he was the one giving us suggestions of what we could do. I don't know if all oncologist are like this but we were more than happy with his list.
If you would like to read more about his travels through Melanoma you can read his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- February 21, 2015 at 7:17 pm
Elaine,
My experience with trials has been that I was on my own as far as finding them. That may have been different if I was being seen at a facility which was a major player in melanoma. I think even those facilities don't always know what's going on at other places which is why being proactive is so important and why a forum like this is so valuable. As suggested I think letting your doctors know you are interested in trials would be helpful. I will add that I think most trials will have a time limit for when you can join such as "within 60 days of disease resection."
Brian
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- February 21, 2015 at 7:17 pm
Elaine,
My experience with trials has been that I was on my own as far as finding them. That may have been different if I was being seen at a facility which was a major player in melanoma. I think even those facilities don't always know what's going on at other places which is why being proactive is so important and why a forum like this is so valuable. As suggested I think letting your doctors know you are interested in trials would be helpful. I will add that I think most trials will have a time limit for when you can join such as "within 60 days of disease resection."
Brian
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- February 21, 2015 at 7:17 pm
Elaine,
My experience with trials has been that I was on my own as far as finding them. That may have been different if I was being seen at a facility which was a major player in melanoma. I think even those facilities don't always know what's going on at other places which is why being proactive is so important and why a forum like this is so valuable. As suggested I think letting your doctors know you are interested in trials would be helpful. I will add that I think most trials will have a time limit for when you can join such as "within 60 days of disease resection."
Brian
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- February 21, 2015 at 6:37 pm
Hello Elaine,
My husband started out at Stage IIIb and his SNB came back negative so he chose watch and wait.
He did have 4 more surgeries and was offered interferon several times which he refused. He then did advance to Stave IV but his doctor told him about a clinical trial to see if he could get into that was local but not offered at the hospital he was at. He failed it as he had to many lesions in his liver. So we went back to his oncologist and he recommended we do a clinical trial that was open there. Also his oncologist has always told us that he thinks we could do Plan B, Plan C and Plan D if Plan A didn't work. So he was the one giving us suggestions of what we could do. I don't know if all oncologist are like this but we were more than happy with his list.
If you would like to read more about his travels through Melanoma you can read his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- February 21, 2015 at 6:37 pm
Hello Elaine,
My husband started out at Stage IIIb and his SNB came back negative so he chose watch and wait.
He did have 4 more surgeries and was offered interferon several times which he refused. He then did advance to Stave IV but his doctor told him about a clinical trial to see if he could get into that was local but not offered at the hospital he was at. He failed it as he had to many lesions in his liver. So we went back to his oncologist and he recommended we do a clinical trial that was open there. Also his oncologist has always told us that he thinks we could do Plan B, Plan C and Plan D if Plan A didn't work. So he was the one giving us suggestions of what we could do. I don't know if all oncologist are like this but we were more than happy with his list.
If you would like to read more about his travels through Melanoma you can read his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- February 21, 2015 at 8:40 pm
Depends on your docs. In my experience trials has been on my own with help from the folks here. You should have a plan a b c and d. Also the clinical trial nurses and some docs keep a list of people interested in a specific trial coming up that is theirs. Not sure about just trials in general. Most seem to ignore trials at other places. It seems if you aren't seeing that doc regularly then you are forgotten probably because they have tons of current patients. But that is just my experience.
Artie
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- February 21, 2015 at 8:40 pm
Depends on your docs. In my experience trials has been on my own with help from the folks here. You should have a plan a b c and d. Also the clinical trial nurses and some docs keep a list of people interested in a specific trial coming up that is theirs. Not sure about just trials in general. Most seem to ignore trials at other places. It seems if you aren't seeing that doc regularly then you are forgotten probably because they have tons of current patients. But that is just my experience.
Artie
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- February 21, 2015 at 8:40 pm
Depends on your docs. In my experience trials has been on my own with help from the folks here. You should have a plan a b c and d. Also the clinical trial nurses and some docs keep a list of people interested in a specific trial coming up that is theirs. Not sure about just trials in general. Most seem to ignore trials at other places. It seems if you aren't seeing that doc regularly then you are forgotten probably because they have tons of current patients. But that is just my experience.
Artie
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- February 21, 2015 at 11:52 pm
Thanks to all of you! After reading your responses and talking to my husband, we've decided I'll reach out to my doc at MSK, mostly just to indicate interest and then to ask about this one specific trial. Not going to push.
It's funny, because I know I need to get past this idea that I might be "bothering" my doctors, but that is how I feel. Honestly, I do know that it's my right to contact them, lol, but I've spent a lifetime being a little less than assertive. Melanoma is going to have to change that for me, I suppose.
Artie, we haven't spoken before, but I have definitely been following your story. I wish you all the best.
Thanks,
Elaine
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- February 21, 2015 at 11:52 pm
Thanks to all of you! After reading your responses and talking to my husband, we've decided I'll reach out to my doc at MSK, mostly just to indicate interest and then to ask about this one specific trial. Not going to push.
It's funny, because I know I need to get past this idea that I might be "bothering" my doctors, but that is how I feel. Honestly, I do know that it's my right to contact them, lol, but I've spent a lifetime being a little less than assertive. Melanoma is going to have to change that for me, I suppose.
Artie, we haven't spoken before, but I have definitely been following your story. I wish you all the best.
Thanks,
Elaine
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- February 22, 2015 at 5:04 am
Hey Elaine,
If your doc is anything li,e the three I have had the p,ensure of dealing with, it won't be a bother at all….in fact, if,you fit the profile for a particular study being conducted at MSKCC, I believe they would be happy to know of your Interest!
Regards
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- February 22, 2015 at 5:04 am
Hey Elaine,
If your doc is anything li,e the three I have had the p,ensure of dealing with, it won't be a bother at all….in fact, if,you fit the profile for a particular study being conducted at MSKCC, I believe they would be happy to know of your Interest!
Regards
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- February 22, 2015 at 5:04 am
Hey Elaine,
If your doc is anything li,e the three I have had the p,ensure of dealing with, it won't be a bother at all….in fact, if,you fit the profile for a particular study being conducted at MSKCC, I believe they would be happy to know of your Interest!
Regards
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- February 23, 2015 at 9:32 pm
Hi Elaine,
Thank you for sharing your story. I am stage 3 as well and have been blogging about the tough decisions I had to make with regards to treatment.
Never, ever feel bad about bothering your doctor – I had to get over that as well. This is literally life or death so do what you think you have to.
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- February 23, 2015 at 9:32 pm
Hi Elaine,
Thank you for sharing your story. I am stage 3 as well and have been blogging about the tough decisions I had to make with regards to treatment.
Never, ever feel bad about bothering your doctor – I had to get over that as well. This is literally life or death so do what you think you have to.
-
- February 23, 2015 at 9:32 pm
Hi Elaine,
Thank you for sharing your story. I am stage 3 as well and have been blogging about the tough decisions I had to make with regards to treatment.
Never, ever feel bad about bothering your doctor – I had to get over that as well. This is literally life or death so do what you think you have to.
-
- February 21, 2015 at 11:52 pm
Thanks to all of you! After reading your responses and talking to my husband, we've decided I'll reach out to my doc at MSK, mostly just to indicate interest and then to ask about this one specific trial. Not going to push.
It's funny, because I know I need to get past this idea that I might be "bothering" my doctors, but that is how I feel. Honestly, I do know that it's my right to contact them, lol, but I've spent a lifetime being a little less than assertive. Melanoma is going to have to change that for me, I suppose.
Artie, we haven't spoken before, but I have definitely been following your story. I wish you all the best.
Thanks,
Elaine
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- February 22, 2015 at 7:26 pm
Hello,
I went ahead and emailed the MSK doctor whose name is on the study (Paul Chapman, if anybody has any feedback). I feel nervous, but I'm glad I made the leap. Thanks for your help, guys.
Best,
Elaine
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- February 23, 2015 at 2:23 am
Hello all,
Bummer of an update. Dr. Chapman at MSK emailed me back right away (on a Sunday!) to let me know that it is a mistake that MSK is listed as one of the locations for the trial. He said he had hoped the error would have been corrected.
That's that, I guess. I do feel emboldened to talk to my doctor here in Chicago about my interest in trials.
Thanks for your support.
Best,
Elaine
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- February 23, 2015 at 2:23 am
Hello all,
Bummer of an update. Dr. Chapman at MSK emailed me back right away (on a Sunday!) to let me know that it is a mistake that MSK is listed as one of the locations for the trial. He said he had hoped the error would have been corrected.
That's that, I guess. I do feel emboldened to talk to my doctor here in Chicago about my interest in trials.
Thanks for your support.
Best,
Elaine
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- February 23, 2015 at 4:49 am
Hi Elaine-
i won't go into lengthy detail about my history; you can read it on my profile. I'm stage 4 and currently NED and know feeling of just needing to "do something". So after a few surgeries with latest being last month and a combo trial in late 2013/early 2014 being NED for a 3rd time…I feel like a ticking time bomb. I went through my onc and Dr Luke at U of Chicago and for adjuvant treatment/ trial was interferon and not recommended. I was told trials may be in making but nothing that fits NED patients that they'd recommend. Let me know what you find.
Best
Josh
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- February 23, 2015 at 4:49 am
Hi Elaine-
i won't go into lengthy detail about my history; you can read it on my profile. I'm stage 4 and currently NED and know feeling of just needing to "do something". So after a few surgeries with latest being last month and a combo trial in late 2013/early 2014 being NED for a 3rd time…I feel like a ticking time bomb. I went through my onc and Dr Luke at U of Chicago and for adjuvant treatment/ trial was interferon and not recommended. I was told trials may be in making but nothing that fits NED patients that they'd recommend. Let me know what you find.
Best
Josh
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- February 23, 2015 at 4:49 am
Hi Elaine-
i won't go into lengthy detail about my history; you can read it on my profile. I'm stage 4 and currently NED and know feeling of just needing to "do something". So after a few surgeries with latest being last month and a combo trial in late 2013/early 2014 being NED for a 3rd time…I feel like a ticking time bomb. I went through my onc and Dr Luke at U of Chicago and for adjuvant treatment/ trial was interferon and not recommended. I was told trials may be in making but nothing that fits NED patients that they'd recommend. Let me know what you find.
Best
Josh
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- February 23, 2015 at 2:23 am
Hello all,
Bummer of an update. Dr. Chapman at MSK emailed me back right away (on a Sunday!) to let me know that it is a mistake that MSK is listed as one of the locations for the trial. He said he had hoped the error would have been corrected.
That's that, I guess. I do feel emboldened to talk to my doctor here in Chicago about my interest in trials.
Thanks for your support.
Best,
Elaine
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