› Forums › General Melanoma Community › MEK Question
- This topic has 16 replies, 5 voices, and was last updated 13 years, 4 months ago by
ValinMtl.
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- April 28, 2011 at 9:17 pm
How long after beginning to take a MEK Inhibitor should it take before results are seen (is there is any effect)? I am taking Eisai 6201 at The Angeles Clinic, and have conpleted one cycle (6 infusions over 3 weeks, with this week off). Tumors have increased in number and size. Scans willl be both CT and MRI. The Doc mentioned the possibility of doing early scans. Should I wait for the schduled scans at 8 weeks or ask for early scans?
How long after beginning to take a MEK Inhibitor should it take before results are seen (is there is any effect)? I am taking Eisai 6201 at The Angeles Clinic, and have conpleted one cycle (6 infusions over 3 weeks, with this week off). Tumors have increased in number and size. Scans willl be both CT and MRI. The Doc mentioned the possibility of doing early scans. Should I wait for the schduled scans at 8 weeks or ask for early scans?
Also, any information about the BRAF trials for non 600E tumors and Brain mets (2 seperate trials)? My Doc says I would be eligible for these but that they are not open yet – maybe in a few months. Not sure if that is accurate, so feedback is appreciated.
Best wishes to all.
Jim
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- April 28, 2011 at 11:18 pm
Hi Jim
I am a little confused, are you saying that you know your tumors have grown in size & number since being on 6201 over the last 3 weeks?/ If so, I would want my scan early. When were your last scans??
If 6201 is not working, I would move onto the treatment. What is you doc saying about other patients on 6201 and when did these patients see results???
Jim. you are in my prayers,
Jan
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- April 29, 2011 at 2:50 am
Jan,
Thanks for responding. Subcutaneous tumors have increased in size and number over the last month. They are mainly on arms and legs, although one has appeared on my tongue. One under my left eye in now turning black, and there are acouple of others right next to that one. There are maybe a few that are not growing, but there is a clear trend. I just emailed my Onc,, Dr Hamid, about whether scans shoud wait for another month for the 2cycle/8 week interval called for tin the trial protocol.
The E6201 has had very few participants to date and is in Phase 1b. He has said "the numbers are good" but he has not offered specifics. One concern is that Study Docs have incentive to continue haivng patients in studies when these is no clear benefit to the patient, or maybe to a patient's detriment. Another concern is whether there are any other trials avaialble. He mentioned the BRAF Brain Met trial, but I am clearly excluded from that having participated in a MEK Trial (which he certainly must know)..
Best,
Jim
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- April 29, 2011 at 11:49 pm
Hi Jim,
So glad to see your post..you have been missed. I always enjoy reading your posts.You have helped lots people with your extensive knowledge base on melanoma
It is my understanding that the inhibitors (ie: BRAF & MEK either work or not work rather quickly).I am surprised that Doc Hamid is not giving you more info. Angeles Clinic is suppose to be center of excellence but you are right Study Docs have an incentive to keep patients on trials. It sounds like Doc Hamid is not giving you much guidance especially his recommendation about the Braf Brain Met trial.
Bottomline, you have to your on advocate. This must be a scary time for you watching subqs growing. If it were me, I would do scans & then make a decision on what treatment you want to do. I would not wait 8 weeks.
Jim, I wish you the best & luck with your scans & next treatment.
Douglas
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- April 29, 2011 at 11:49 pm
Hi Jim,
So glad to see your post..you have been missed. I always enjoy reading your posts.You have helped lots people with your extensive knowledge base on melanoma
It is my understanding that the inhibitors (ie: BRAF & MEK either work or not work rather quickly).I am surprised that Doc Hamid is not giving you more info. Angeles Clinic is suppose to be center of excellence but you are right Study Docs have an incentive to keep patients on trials. It sounds like Doc Hamid is not giving you much guidance especially his recommendation about the Braf Brain Met trial.
Bottomline, you have to your on advocate. This must be a scary time for you watching subqs growing. If it were me, I would do scans & then make a decision on what treatment you want to do. I would not wait 8 weeks.
Jim, I wish you the best & luck with your scans & next treatment.
Douglas
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- April 29, 2011 at 2:50 am
Jan,
Thanks for responding. Subcutaneous tumors have increased in size and number over the last month. They are mainly on arms and legs, although one has appeared on my tongue. One under my left eye in now turning black, and there are acouple of others right next to that one. There are maybe a few that are not growing, but there is a clear trend. I just emailed my Onc,, Dr Hamid, about whether scans shoud wait for another month for the 2cycle/8 week interval called for tin the trial protocol.
The E6201 has had very few participants to date and is in Phase 1b. He has said "the numbers are good" but he has not offered specifics. One concern is that Study Docs have incentive to continue haivng patients in studies when these is no clear benefit to the patient, or maybe to a patient's detriment. Another concern is whether there are any other trials avaialble. He mentioned the BRAF Brain Met trial, but I am clearly excluded from that having participated in a MEK Trial (which he certainly must know)..
Best,
Jim
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- April 28, 2011 at 11:18 pm
Hi Jim
I am a little confused, are you saying that you know your tumors have grown in size & number since being on 6201 over the last 3 weeks?/ If so, I would want my scan early. When were your last scans??
If 6201 is not working, I would move onto the treatment. What is you doc saying about other patients on 6201 and when did these patients see results???
Jim. you are in my prayers,
Jan
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- April 29, 2011 at 1:10 pm
not sure about MEK but the Docs will have some idea how long it takes to show response, i have read that some success has been achieved with Elsai's other drug E7080. There is a post close to yours about it.
Good luck with your treatments.
James
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- April 29, 2011 at 1:10 pm
not sure about MEK but the Docs will have some idea how long it takes to show response, i have read that some success has been achieved with Elsai's other drug E7080. There is a post close to yours about it.
Good luck with your treatments.
James
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- April 29, 2011 at 2:28 pm
Jim, I am not a doctor, but it is my understanding that E6201 has a very short half life, but can also have a
prolonged effect on the RAS/RAF/MEK pathway, so one would think if it was going to work it would begin to do so rather quickly.I do not know of any human results, but I read that in vitro the drug started working rather quickly-within 4 hours.
By all means ask for early scans. I also could not find the two trials yet at clinicaltrials.gov.
Michael
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- April 29, 2011 at 2:28 pm
Jim, I am not a doctor, but it is my understanding that E6201 has a very short half life, but can also have a
prolonged effect on the RAS/RAF/MEK pathway, so one would think if it was going to work it would begin to do so rather quickly.I do not know of any human results, but I read that in vitro the drug started working rather quickly-within 4 hours.
By all means ask for early scans. I also could not find the two trials yet at clinicaltrials.gov.
Michael
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- April 30, 2011 at 3:19 am
Thanks for the responses Dougles, James, and Michael. You can tell I am trying to weigh choices, which are often not clear cut. The Trial is VERY small, with 20 in Phase 1"A" which the MTD (Maximum Tolerated Dose). Unlike the other MEKs, this one is liquid (not in pill form), does not require BRAF 600e, and allows brain mets. Here is more info: http://clinicaltrials.gov/ct2/show/NCT00794781 E7080 is an unrelated compound about which there is much more information and it seems like a very promising treatment for melanoma. I am not eligible for that trial and many other because I cannot prove that I do NOT have brain mets (long story).
The reason I am asking for information/reactions is because I was a participant in an Ipi/Temador trial at MDA in which I may have stayed in for too long (in my opinion, with hindsight ). After scans on Feb 14th, I was informed that there was progression. The MRI and PET/CT showed progression, and both Scan Reports said in writing that PROGRESSION WAS SHOWING 2 MONTHS EARLIER IN DECEMBER SCANS. I also told my Doc in January that subqs we popping up and pointed them out to her. She told me not to worry. This little story is true, and shows that Doctors can make mistakes by keeping people in trials too long when it is clear that the patient is receiving no benefit. In fact, it can be argued that in some cases that the Doc knowingly harmed the patient. Some would go so far as to argue that the situation may indicate malpractice and negligence.
Given my experience, my confidence level in "Research Oncologists" is not very high. I will raise the possibility that I could stop now, which we all can do anytime with trials.. Of course, such a decision would not exactly endear me to the Doc regarding other trials he may have available. So you see, the issues are complicated for me. It is almost to the coin tossing stage. I don't want to end up staying in any trial that will not benefit me, and perhaps works against me by depriving me of time that could be used tryain another approach.
Thanks for reading about the story. It helps me just to write about it, but feedback is certainly welcomed. Best wishes to all.
Jim
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- April 30, 2011 at 5:11 pm
Hi Jim,
My heart goes out to you. You have had a very rough time of it.
I feel the same way you do about Research Oncologists, especially at Angeles Clinic. I think the clinic is run like a business to make money getting patients to sign up for trials. I spoke to a study coordinator that validated my opinion.
I also have been a patient of Dr. Hamid.
Long story short, I am no longer a patient of Dr. Hamid because I believe he did not have my best welfare at heart,,,he seemed more concerned about the results of the trial I was in, etc. Just my opinion.
The one thing that I would not be concerned about is if you drop out of the trial, Dr. Hamid would not let you into another trial. You need to do what is best for you because you might run out of time to get into another trial or just have traditional therapy.
Good Luck with your decision
B
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- April 30, 2011 at 5:11 pm
Hi Jim,
My heart goes out to you. You have had a very rough time of it.
I feel the same way you do about Research Oncologists, especially at Angeles Clinic. I think the clinic is run like a business to make money getting patients to sign up for trials. I spoke to a study coordinator that validated my opinion.
I also have been a patient of Dr. Hamid.
Long story short, I am no longer a patient of Dr. Hamid because I believe he did not have my best welfare at heart,,,he seemed more concerned about the results of the trial I was in, etc. Just my opinion.
The one thing that I would not be concerned about is if you drop out of the trial, Dr. Hamid would not let you into another trial. You need to do what is best for you because you might run out of time to get into another trial or just have traditional therapy.
Good Luck with your decision
B
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- April 30, 2011 at 3:19 am
Thanks for the responses Dougles, James, and Michael. You can tell I am trying to weigh choices, which are often not clear cut. The Trial is VERY small, with 20 in Phase 1"A" which the MTD (Maximum Tolerated Dose). Unlike the other MEKs, this one is liquid (not in pill form), does not require BRAF 600e, and allows brain mets. Here is more info: http://clinicaltrials.gov/ct2/show/NCT00794781 E7080 is an unrelated compound about which there is much more information and it seems like a very promising treatment for melanoma. I am not eligible for that trial and many other because I cannot prove that I do NOT have brain mets (long story).
The reason I am asking for information/reactions is because I was a participant in an Ipi/Temador trial at MDA in which I may have stayed in for too long (in my opinion, with hindsight ). After scans on Feb 14th, I was informed that there was progression. The MRI and PET/CT showed progression, and both Scan Reports said in writing that PROGRESSION WAS SHOWING 2 MONTHS EARLIER IN DECEMBER SCANS. I also told my Doc in January that subqs we popping up and pointed them out to her. She told me not to worry. This little story is true, and shows that Doctors can make mistakes by keeping people in trials too long when it is clear that the patient is receiving no benefit. In fact, it can be argued that in some cases that the Doc knowingly harmed the patient. Some would go so far as to argue that the situation may indicate malpractice and negligence.
Given my experience, my confidence level in "Research Oncologists" is not very high. I will raise the possibility that I could stop now, which we all can do anytime with trials.. Of course, such a decision would not exactly endear me to the Doc regarding other trials he may have available. So you see, the issues are complicated for me. It is almost to the coin tossing stage. I don't want to end up staying in any trial that will not benefit me, and perhaps works against me by depriving me of time that could be used tryain another approach.
Thanks for reading about the story. It helps me just to write about it, but feedback is certainly welcomed. Best wishes to all.
Jim
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- April 30, 2011 at 8:37 pm
Hi Jim…Yes, it is a worry for me too…am I staying too long on ipi….don't see much improvement after 2nd treatment of 2nd round…I'll be talking to the docs about continuing before my next treatment on Thursday, alas not too much options up this way.
I am searching for potential trials and Warren G. suggested I contact NIH. QUESTION for you….have you had HLA typing to see if you have A0201 protein?? If yes to protein, you would be eligible What do you think of this trial?? It allows for 3 small brain mets.
http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1
Wishing you the best…Val
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- April 30, 2011 at 8:37 pm
Hi Jim…Yes, it is a worry for me too…am I staying too long on ipi….don't see much improvement after 2nd treatment of 2nd round…I'll be talking to the docs about continuing before my next treatment on Thursday, alas not too much options up this way.
I am searching for potential trials and Warren G. suggested I contact NIH. QUESTION for you….have you had HLA typing to see if you have A0201 protein?? If yes to protein, you would be eligible What do you think of this trial?? It allows for 3 small brain mets.
http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1
Wishing you the best…Val
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