› Forums › General Melanoma Community › Clinical Trials
- This topic has 42 replies, 5 voices, and was last updated 10 years, 2 months ago by
Maureen038.
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- February 3, 2014 at 8:16 pm
I hope I don't sound stupid, but are doctors responsible for finding clinical trials for their patiens or do we find them on our own? In my case, my doctor, Evan Lipson, has been looking for me but I am looking on my own as well. Is this the way it normally works? I'm starting IL2 on Monday, but after that Dr. Lipson feels he might be able to get me into a trial unless IL2 works. You never know…. 🙂 Just wondering how this has worked for other people.
Terrie
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- February 3, 2014 at 9:11 pm
That is not a stupid question at all, it is a very good question. I think that the answer varies depending on the doctor, the patient and the situation. (Not a very helpful answer, is it?)
Seriously, though, some doctors (especially melanoma specialists) are really "up" on the clinical trial picture. They read the literature, attend scientific conferences, and talk to their melanoma colleagues. Some also have the time to search clinical trials databases on behalf of their patients and some do not. So a lot depends on your doctor.
Some patients (and often this is done by caregivers) feel more in control if they research clinical trial options, too. Certainly, they look first and hardest at any trials their doctor recommends, but they just feel better being their own best advocate. A lot depends on the patient's situation, too. Are you willing and able to travel some distance quite frequently to participate in a clinical trial? Do you have a job or children or a financial situation that requires you to stay close to home? Or maybe you have friends or relations in Houston (for example) so that going to MD Anderson for a clinical trial would not be a hardship for you. Your doctor might not know such details of your life's situation.
And, of course, your medical status is of crucial concern. Your stage, prognosis, prior treatments, genetic mutations, etc. all factor in to any clinical trial decision. There are probably a lot of potential clinical trials out there but very few that medically are appropriate for you. Your doctor would probably be the best judge of that.
I know that once my brother progressed on Zelboraf, his oncologist did not mention any clinical trials– he was only talking about temodar and cisplatin. I did the reseach and came to him with 2 possible clinical trials. He read the protocols and supported my brother trying one of the two. So, yes, sometimes it is a good idea for you to check out the clinical trial situation yourself but it is certainly not required.
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- February 3, 2014 at 9:11 pm
That is not a stupid question at all, it is a very good question. I think that the answer varies depending on the doctor, the patient and the situation. (Not a very helpful answer, is it?)
Seriously, though, some doctors (especially melanoma specialists) are really "up" on the clinical trial picture. They read the literature, attend scientific conferences, and talk to their melanoma colleagues. Some also have the time to search clinical trials databases on behalf of their patients and some do not. So a lot depends on your doctor.
Some patients (and often this is done by caregivers) feel more in control if they research clinical trial options, too. Certainly, they look first and hardest at any trials their doctor recommends, but they just feel better being their own best advocate. A lot depends on the patient's situation, too. Are you willing and able to travel some distance quite frequently to participate in a clinical trial? Do you have a job or children or a financial situation that requires you to stay close to home? Or maybe you have friends or relations in Houston (for example) so that going to MD Anderson for a clinical trial would not be a hardship for you. Your doctor might not know such details of your life's situation.
And, of course, your medical status is of crucial concern. Your stage, prognosis, prior treatments, genetic mutations, etc. all factor in to any clinical trial decision. There are probably a lot of potential clinical trials out there but very few that medically are appropriate for you. Your doctor would probably be the best judge of that.
I know that once my brother progressed on Zelboraf, his oncologist did not mention any clinical trials– he was only talking about temodar and cisplatin. I did the reseach and came to him with 2 possible clinical trials. He read the protocols and supported my brother trying one of the two. So, yes, sometimes it is a good idea for you to check out the clinical trial situation yourself but it is certainly not required.
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- February 4, 2014 at 12:23 am
Thank you! I'm pretty new at all this so there are things I don't understand, but I'm learning. I surely learning that we have to be our own advocates! I'm looking at a several trials but IL2 is the priority right now. Praying that I get some kind of response!
Thanks again for your thorough response!
Terrie
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- February 4, 2014 at 12:23 am
Thank you! I'm pretty new at all this so there are things I don't understand, but I'm learning. I surely learning that we have to be our own advocates! I'm looking at a several trials but IL2 is the priority right now. Praying that I get some kind of response!
Thanks again for your thorough response!
Terrie
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- February 4, 2014 at 12:23 am
Thank you! I'm pretty new at all this so there are things I don't understand, but I'm learning. I surely learning that we have to be our own advocates! I'm looking at a several trials but IL2 is the priority right now. Praying that I get some kind of response!
Thanks again for your thorough response!
Terrie
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- February 3, 2014 at 9:11 pm
That is not a stupid question at all, it is a very good question. I think that the answer varies depending on the doctor, the patient and the situation. (Not a very helpful answer, is it?)
Seriously, though, some doctors (especially melanoma specialists) are really "up" on the clinical trial picture. They read the literature, attend scientific conferences, and talk to their melanoma colleagues. Some also have the time to search clinical trials databases on behalf of their patients and some do not. So a lot depends on your doctor.
Some patients (and often this is done by caregivers) feel more in control if they research clinical trial options, too. Certainly, they look first and hardest at any trials their doctor recommends, but they just feel better being their own best advocate. A lot depends on the patient's situation, too. Are you willing and able to travel some distance quite frequently to participate in a clinical trial? Do you have a job or children or a financial situation that requires you to stay close to home? Or maybe you have friends or relations in Houston (for example) so that going to MD Anderson for a clinical trial would not be a hardship for you. Your doctor might not know such details of your life's situation.
And, of course, your medical status is of crucial concern. Your stage, prognosis, prior treatments, genetic mutations, etc. all factor in to any clinical trial decision. There are probably a lot of potential clinical trials out there but very few that medically are appropriate for you. Your doctor would probably be the best judge of that.
I know that once my brother progressed on Zelboraf, his oncologist did not mention any clinical trials– he was only talking about temodar and cisplatin. I did the reseach and came to him with 2 possible clinical trials. He read the protocols and supported my brother trying one of the two. So, yes, sometimes it is a good idea for you to check out the clinical trial situation yourself but it is certainly not required.
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- February 4, 2014 at 1:54 am
Terrie,
I think you are very fortunate if you have a Dr. that is researching for you. In my experience that is the exception rather than the rule. I've also been surprised to find that a lot of doctors, even at some of the highest regarded places don't have a lot of knowledge about what trials are going on at other locations. Of course they are familiar with the trials at their location and are familiar with some of the buzz trials that are presented at ASCO. I was at one of the most regarded melanoma facilities and I asked a highly regarded Dr. his thoughts on ADC and he had never heard of it (this was about 8 months ago). Maybe there was a communication problem or something but I couldn't believe it.
Every trial I've been on or attempted to get on has all been through my own research and my own self referal. I often wish I did have someone to help me out in that regard but at least I have MPIP. Thank God for that.
Brian
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- February 4, 2014 at 1:54 am
Terrie,
I think you are very fortunate if you have a Dr. that is researching for you. In my experience that is the exception rather than the rule. I've also been surprised to find that a lot of doctors, even at some of the highest regarded places don't have a lot of knowledge about what trials are going on at other locations. Of course they are familiar with the trials at their location and are familiar with some of the buzz trials that are presented at ASCO. I was at one of the most regarded melanoma facilities and I asked a highly regarded Dr. his thoughts on ADC and he had never heard of it (this was about 8 months ago). Maybe there was a communication problem or something but I couldn't believe it.
Every trial I've been on or attempted to get on has all been through my own research and my own self referal. I often wish I did have someone to help me out in that regard but at least I have MPIP. Thank God for that.
Brian
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- February 4, 2014 at 1:54 am
Terrie,
I think you are very fortunate if you have a Dr. that is researching for you. In my experience that is the exception rather than the rule. I've also been surprised to find that a lot of doctors, even at some of the highest regarded places don't have a lot of knowledge about what trials are going on at other locations. Of course they are familiar with the trials at their location and are familiar with some of the buzz trials that are presented at ASCO. I was at one of the most regarded melanoma facilities and I asked a highly regarded Dr. his thoughts on ADC and he had never heard of it (this was about 8 months ago). Maybe there was a communication problem or something but I couldn't believe it.
Every trial I've been on or attempted to get on has all been through my own research and my own self referal. I often wish I did have someone to help me out in that regard but at least I have MPIP. Thank God for that.
Brian
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- February 4, 2014 at 2:30 pm
I agree with Brian and Pat. When my husband finished TIL at NIH and two of his lung mets were growing, it was up to us to find the next trial. They did recommend Dr. Atkins at Georgetown. We had seen him before and almost did the nivolumbab/ipi trial with him before we decided on the TIL. Dr. Atkins personally answered my email and told me he would check to see if there was an opening in Pittsburg. We were very fortunate to get in the phase 1 trial with the best arm and we feel blessed that Dr. Atkins went out of his way for us. To be fair though, Dr. Rosenberg at NIH, Dr. Weber at Moffit and Dr. Herlyn at Wistar all have answered my emails on questions about treatments and research. Catherine Poole at MIF is an excellent help too and Tim at MRF has answered my email and talked to my husband on the phone. My advice is to ALWAYS be your own advocate and search for your own trials too. No doctor or person is 100 percent positive on what will work. It's your life and it's your choice. Best wishes to all!!
Maureen
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- February 4, 2014 at 2:30 pm
I agree with Brian and Pat. When my husband finished TIL at NIH and two of his lung mets were growing, it was up to us to find the next trial. They did recommend Dr. Atkins at Georgetown. We had seen him before and almost did the nivolumbab/ipi trial with him before we decided on the TIL. Dr. Atkins personally answered my email and told me he would check to see if there was an opening in Pittsburg. We were very fortunate to get in the phase 1 trial with the best arm and we feel blessed that Dr. Atkins went out of his way for us. To be fair though, Dr. Rosenberg at NIH, Dr. Weber at Moffit and Dr. Herlyn at Wistar all have answered my emails on questions about treatments and research. Catherine Poole at MIF is an excellent help too and Tim at MRF has answered my email and talked to my husband on the phone. My advice is to ALWAYS be your own advocate and search for your own trials too. No doctor or person is 100 percent positive on what will work. It's your life and it's your choice. Best wishes to all!!
Maureen
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- February 5, 2014 at 1:36 pm
Thank you for your input. I'm searching for trials but am starting IL2 on Monday, so I'll put my searches on hold while i'm in treatment. My John Hopkins doctor, Evan Lipson, really has been great and is searching and fighting for me. I was on steroids for a while and I also had a brain tumor removed last February, so trials don't like that. The further out I get from these two pests, the better!
Terrie
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- February 5, 2014 at 1:36 pm
Thank you for your input. I'm searching for trials but am starting IL2 on Monday, so I'll put my searches on hold while i'm in treatment. My John Hopkins doctor, Evan Lipson, really has been great and is searching and fighting for me. I was on steroids for a while and I also had a brain tumor removed last February, so trials don't like that. The further out I get from these two pests, the better!
Terrie
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- February 5, 2014 at 5:11 pm
Terri,
I wish you the very best! My husband had IL2 during the TIL treatment. It's different from just doing IL2 by itself because you are neutrapenic at the time. The nurses are such a big help and it's definitely doable!!! It helped my husband that I was there the whole time. He had 5 bags. I have heard good things about Dr. Lipson and Hopkins is very professional. Bill had a 1 cm lung nodule removed by Dr. Yang. We thought the world of him. We didn't stay there because we didn't care for Dr.Scharfman. He might have a lot of knowledge on melanoma, but he seemed very blasé on different treatments. We didn't know about Dr. Lipson. We wanted someone on our team that thought outside of the box and was aggressive. Bill has a team of doctors that he sees. He is with Dr. Kirkwood for his ipi/ nivolumbab trial, plus he gets advice from Dr. Atkins at Georgetown and Dr. Venna at WHC. His main doctor is Dr. Sandra O'Connor who is an oncologist and hematologist. She is young, aggressive and always puts Bill's health first and helps us navigate the trials. It's wonderful to have her on our side. With this disease, it takes a village. 🙂
Maureen
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- February 5, 2014 at 5:11 pm
Terri,
I wish you the very best! My husband had IL2 during the TIL treatment. It's different from just doing IL2 by itself because you are neutrapenic at the time. The nurses are such a big help and it's definitely doable!!! It helped my husband that I was there the whole time. He had 5 bags. I have heard good things about Dr. Lipson and Hopkins is very professional. Bill had a 1 cm lung nodule removed by Dr. Yang. We thought the world of him. We didn't stay there because we didn't care for Dr.Scharfman. He might have a lot of knowledge on melanoma, but he seemed very blasé on different treatments. We didn't know about Dr. Lipson. We wanted someone on our team that thought outside of the box and was aggressive. Bill has a team of doctors that he sees. He is with Dr. Kirkwood for his ipi/ nivolumbab trial, plus he gets advice from Dr. Atkins at Georgetown and Dr. Venna at WHC. His main doctor is Dr. Sandra O'Connor who is an oncologist and hematologist. She is young, aggressive and always puts Bill's health first and helps us navigate the trials. It's wonderful to have her on our side. With this disease, it takes a village. 🙂
Maureen
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- February 5, 2014 at 5:24 pm
Oops! I meant Dr. Shannon O'Connor.
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- February 6, 2014 at 12:55 am
Thank you, Maureen! I'm so anxious about IL2. Wish it was over with! Oh well….I need to count my blessings and quit whining! I really do like Dr. Lipson but am getting the IL2 at UVA with Dr. Geoffrey Weiss. (As a rule, Hopkins won't give IL2 to patients who have had brain tumors…which I have had.) I've heard of Dr. Adkins and the Lombardi Center. Is it hard to get an appointment with him? Where is Dr. O'Connor located? We live in Northern Virginia. We don't have to go to Baltimore because Dr. Lipson goes to the Kimmel Center at Sibley Hospital in Northwest DC on Thursdays. They really have a nice set-up. The staff is so friendly both in person and on the phone. I also see Dr. Catherine Bishop who is a nurse practitioner specializing in oncology. She is at Kimmel/Sibley as well. We are so fortunate to live in an area that is so rich with medical talent!
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- February 6, 2014 at 12:55 am
Thank you, Maureen! I'm so anxious about IL2. Wish it was over with! Oh well….I need to count my blessings and quit whining! I really do like Dr. Lipson but am getting the IL2 at UVA with Dr. Geoffrey Weiss. (As a rule, Hopkins won't give IL2 to patients who have had brain tumors…which I have had.) I've heard of Dr. Adkins and the Lombardi Center. Is it hard to get an appointment with him? Where is Dr. O'Connor located? We live in Northern Virginia. We don't have to go to Baltimore because Dr. Lipson goes to the Kimmel Center at Sibley Hospital in Northwest DC on Thursdays. They really have a nice set-up. The staff is so friendly both in person and on the phone. I also see Dr. Catherine Bishop who is a nurse practitioner specializing in oncology. She is at Kimmel/Sibley as well. We are so fortunate to live in an area that is so rich with medical talent!
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- February 6, 2014 at 12:55 am
Thank you, Maureen! I'm so anxious about IL2. Wish it was over with! Oh well….I need to count my blessings and quit whining! I really do like Dr. Lipson but am getting the IL2 at UVA with Dr. Geoffrey Weiss. (As a rule, Hopkins won't give IL2 to patients who have had brain tumors…which I have had.) I've heard of Dr. Adkins and the Lombardi Center. Is it hard to get an appointment with him? Where is Dr. O'Connor located? We live in Northern Virginia. We don't have to go to Baltimore because Dr. Lipson goes to the Kimmel Center at Sibley Hospital in Northwest DC on Thursdays. They really have a nice set-up. The staff is so friendly both in person and on the phone. I also see Dr. Catherine Bishop who is a nurse practitioner specializing in oncology. She is at Kimmel/Sibley as well. We are so fortunate to live in an area that is so rich with medical talent!
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- February 6, 2014 at 1:52 am
My husband had no trouble getting an appointment with Dr.Atkins and he is a big believer in IL2. He also works at WHC so if you are interested you can schedule it so you can see Dr. Venna too. That's what we do. Dr. Shannon Oconnor works at Associates in oncology and hematology. They are located in the brand new gorgeous Aquillino Center right next to Shady Grove Hospital. It has support groups, yoga, nutrition classes etc. Email me and i can give you more information. Please let me know how things are going.
Maureen
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- February 6, 2014 at 1:52 am
My husband had no trouble getting an appointment with Dr.Atkins and he is a big believer in IL2. He also works at WHC so if you are interested you can schedule it so you can see Dr. Venna too. That's what we do. Dr. Shannon Oconnor works at Associates in oncology and hematology. They are located in the brand new gorgeous Aquillino Center right next to Shady Grove Hospital. It has support groups, yoga, nutrition classes etc. Email me and i can give you more information. Please let me know how things are going.
Maureen
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- February 6, 2014 at 1:52 am
My husband had no trouble getting an appointment with Dr.Atkins and he is a big believer in IL2. He also works at WHC so if you are interested you can schedule it so you can see Dr. Venna too. That's what we do. Dr. Shannon Oconnor works at Associates in oncology and hematology. They are located in the brand new gorgeous Aquillino Center right next to Shady Grove Hospital. It has support groups, yoga, nutrition classes etc. Email me and i can give you more information. Please let me know how things are going.
Maureen
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- February 6, 2014 at 2:53 pm
Hi Maureen!
Didn't mean to post the empty reply! Thank you for the information. I googled the Aquilino Center, Dr. O'Connor, Dr. Atkins, etc, so now I have the info if I need it.
Next week at this time I'll be almost finished with Round 1 of IL2…thank you for encouraging me. I'm a bit of a chicken.
My best to you and your husband.
Thanks again….Terrie
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- February 6, 2014 at 2:53 pm
Hi Maureen!
Didn't mean to post the empty reply! Thank you for the information. I googled the Aquilino Center, Dr. O'Connor, Dr. Atkins, etc, so now I have the info if I need it.
Next week at this time I'll be almost finished with Round 1 of IL2…thank you for encouraging me. I'm a bit of a chicken.
My best to you and your husband.
Thanks again….Terrie
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- February 6, 2014 at 2:53 pm
Hi Maureen!
Didn't mean to post the empty reply! Thank you for the information. I googled the Aquilino Center, Dr. O'Connor, Dr. Atkins, etc, so now I have the info if I need it.
Next week at this time I'll be almost finished with Round 1 of IL2…thank you for encouraging me. I'm a bit of a chicken.
My best to you and your husband.
Thanks again….Terrie
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- February 7, 2014 at 7:30 pm
Terri,
I will be thinking of you next week. I know you can do this!! The nurses and doctors are very attentive and careful. Email me at [email protected] if you have any questions.
Maureen
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- February 7, 2014 at 7:30 pm
Terri,
I will be thinking of you next week. I know you can do this!! The nurses and doctors are very attentive and careful. Email me at [email protected] if you have any questions.
Maureen
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- February 7, 2014 at 7:30 pm
Terri,
I will be thinking of you next week. I know you can do this!! The nurses and doctors are very attentive and careful. Email me at [email protected] if you have any questions.
Maureen
-
- February 5, 2014 at 5:24 pm
Oops! I meant Dr. Shannon O'Connor.
-
- February 5, 2014 at 5:24 pm
Oops! I meant Dr. Shannon O'Connor.
-
- February 5, 2014 at 5:11 pm
Terri,
I wish you the very best! My husband had IL2 during the TIL treatment. It's different from just doing IL2 by itself because you are neutrapenic at the time. The nurses are such a big help and it's definitely doable!!! It helped my husband that I was there the whole time. He had 5 bags. I have heard good things about Dr. Lipson and Hopkins is very professional. Bill had a 1 cm lung nodule removed by Dr. Yang. We thought the world of him. We didn't stay there because we didn't care for Dr.Scharfman. He might have a lot of knowledge on melanoma, but he seemed very blasé on different treatments. We didn't know about Dr. Lipson. We wanted someone on our team that thought outside of the box and was aggressive. Bill has a team of doctors that he sees. He is with Dr. Kirkwood for his ipi/ nivolumbab trial, plus he gets advice from Dr. Atkins at Georgetown and Dr. Venna at WHC. His main doctor is Dr. Sandra O'Connor who is an oncologist and hematologist. She is young, aggressive and always puts Bill's health first and helps us navigate the trials. It's wonderful to have her on our side. With this disease, it takes a village. 🙂
Maureen
-
- February 5, 2014 at 1:36 pm
Thank you for your input. I'm searching for trials but am starting IL2 on Monday, so I'll put my searches on hold while i'm in treatment. My John Hopkins doctor, Evan Lipson, really has been great and is searching and fighting for me. I was on steroids for a while and I also had a brain tumor removed last February, so trials don't like that. The further out I get from these two pests, the better!
Terrie
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- February 7, 2014 at 9:12 am
Terri, I agree with all the above. Go to it, Gal.
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- February 7, 2014 at 9:12 am
Terri, I agree with all the above. Go to it, Gal.
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- February 7, 2014 at 9:12 am
Terri, I agree with all the above. Go to it, Gal.
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- February 4, 2014 at 2:30 pm
I agree with Brian and Pat. When my husband finished TIL at NIH and two of his lung mets were growing, it was up to us to find the next trial. They did recommend Dr. Atkins at Georgetown. We had seen him before and almost did the nivolumbab/ipi trial with him before we decided on the TIL. Dr. Atkins personally answered my email and told me he would check to see if there was an opening in Pittsburg. We were very fortunate to get in the phase 1 trial with the best arm and we feel blessed that Dr. Atkins went out of his way for us. To be fair though, Dr. Rosenberg at NIH, Dr. Weber at Moffit and Dr. Herlyn at Wistar all have answered my emails on questions about treatments and research. Catherine Poole at MIF is an excellent help too and Tim at MRF has answered my email and talked to my husband on the phone. My advice is to ALWAYS be your own advocate and search for your own trials too. No doctor or person is 100 percent positive on what will work. It's your life and it's your choice. Best wishes to all!!
Maureen
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- February 6, 2014 at 6:31 pm
Terrie,
A friend of mine who was having difficulty posting to MPIP asked me to post this for you.
"Could you pass along to Terrie Schmith on MPIP the info that (per UV A trial coordinator) BMS may be expanding PD-1 biomarker trial NCT01621490 with an additional 80 new spots nationwide for folks with treated brain mets –
She is status post-Yervoy w/ treated brain mets, and she is starting IL-2 at UVA on Monday, but still actively looking for clinical trials. She is in NOVA and has also been working with Dr. Lipson at Hopkins to find a clinical trial.She could check with the trial coordinator at Hopkins or UVA (both trial sites) to find out when it might begin enrolling (could be weeks or months), and whether she might qualify."I have most of the contact numbers for the clincal trial coordinators at UVA. If you would like them you can email me at [email protected]Brian -
- February 6, 2014 at 6:31 pm
Terrie,
A friend of mine who was having difficulty posting to MPIP asked me to post this for you.
"Could you pass along to Terrie Schmith on MPIP the info that (per UV A trial coordinator) BMS may be expanding PD-1 biomarker trial NCT01621490 with an additional 80 new spots nationwide for folks with treated brain mets –
She is status post-Yervoy w/ treated brain mets, and she is starting IL-2 at UVA on Monday, but still actively looking for clinical trials. She is in NOVA and has also been working with Dr. Lipson at Hopkins to find a clinical trial.She could check with the trial coordinator at Hopkins or UVA (both trial sites) to find out when it might begin enrolling (could be weeks or months), and whether she might qualify."I have most of the contact numbers for the clincal trial coordinators at UVA. If you would like them you can email me at [email protected]Brian -
- February 6, 2014 at 6:31 pm
Terrie,
A friend of mine who was having difficulty posting to MPIP asked me to post this for you.
"Could you pass along to Terrie Schmith on MPIP the info that (per UV A trial coordinator) BMS may be expanding PD-1 biomarker trial NCT01621490 with an additional 80 new spots nationwide for folks with treated brain mets –
She is status post-Yervoy w/ treated brain mets, and she is starting IL-2 at UVA on Monday, but still actively looking for clinical trials. She is in NOVA and has also been working with Dr. Lipson at Hopkins to find a clinical trial.She could check with the trial coordinator at Hopkins or UVA (both trial sites) to find out when it might begin enrolling (could be weeks or months), and whether she might qualify."I have most of the contact numbers for the clincal trial coordinators at UVA. If you would like them you can email me at [email protected]Brian
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