@jim-in-denver
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- May 4, 2011 at 11:34 pm
PSAs the States are luck to be run if they are 30 seconds, unfortunately. Maybe MRF should spend more time trying to get Pharma to fund PSAs here.
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- May 4, 2011 at 11:34 pm
PSAs the States are luck to be run if they are 30 seconds, unfortunately. Maybe MRF should spend more time trying to get Pharma to fund PSAs here.
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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 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 23, 2011 at 2:42 am
Thanks for posting, Kevin. I never cease to be im-pressed by your attitude and spirit. This sounds like good news – brain clear and nothing new. I would take that in a heartbeat, even though we all want this evil crap to slow down or stop, if not reverse. Sending positive thoughts.
Best,
Jim
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- April 23, 2011 at 2:42 am
Thanks for posting, Kevin. I never cease to be im-pressed by your attitude and spirit. This sounds like good news – brain clear and nothing new. I would take that in a heartbeat, even though we all want this evil crap to slow down or stop, if not reverse. Sending positive thoughts.
Best,
Jim
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- April 20, 2011 at 6:15 pm
Hi Val (and Jan),
I haven't posted since February, I think. Thanks for asking about me. Went off the Ipi/Temador trial at MDA on Feb.15th due to scans showing new mets – subqs, intestinal, and very small brain "focii". As you probably know, any possibility of brain mets will disqualify you from many trials, even when the reports do not clearly dignose any. I consulted with several Oncs at different hospitals and was offered either IL2, Chemo, Biochemo, or Phase 1s. Also was offered WBR and SRS – have done neither.
Started current treatment on April 4th at The Angeles Clinic in an E6201 Trial, which is a MEK Inhibitor. I get infusions on Monday and Thursday, 3 weeks on, one week off, and get scans after 2 cycles (end of May). Had an intestinal issue from small mets (Intussusception) which required hospitalization for a couple of days in LA, which has since resloved itself. No significant side effects form the treatment, although travel poses some logistical issues. Overall my health is good, although I have lost 10 pounds or so the last couple of months and occasionally feel fatigue.
That is a brief summary of my journey the last couple of months. I haven't posted much because there was not much to report and it was difficult to type because of a collision skiing that resulted in a fractured right humerus (upper arm – the ball at the top) and rotator cuff, which is now much better. Best wishes to my many friends and acquaintences on MPIP.
Regards,
Jim
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- April 20, 2011 at 6:15 pm
Hi Val (and Jan),
I haven't posted since February, I think. Thanks for asking about me. Went off the Ipi/Temador trial at MDA on Feb.15th due to scans showing new mets – subqs, intestinal, and very small brain "focii". As you probably know, any possibility of brain mets will disqualify you from many trials, even when the reports do not clearly dignose any. I consulted with several Oncs at different hospitals and was offered either IL2, Chemo, Biochemo, or Phase 1s. Also was offered WBR and SRS – have done neither.
Started current treatment on April 4th at The Angeles Clinic in an E6201 Trial, which is a MEK Inhibitor. I get infusions on Monday and Thursday, 3 weeks on, one week off, and get scans after 2 cycles (end of May). Had an intestinal issue from small mets (Intussusception) which required hospitalization for a couple of days in LA, which has since resloved itself. No significant side effects form the treatment, although travel poses some logistical issues. Overall my health is good, although I have lost 10 pounds or so the last couple of months and occasionally feel fatigue.
That is a brief summary of my journey the last couple of months. I haven't posted much because there was not much to report and it was difficult to type because of a collision skiing that resulted in a fractured right humerus (upper arm – the ball at the top) and rotator cuff, which is now much better. Best wishes to my many friends and acquaintences on MPIP.
Regards,
Jim
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- March 26, 2011 at 10:25 pm
No real surprises here, so let's please be civil in discussions about this drug and others coming along. I have my own issues with the system, but will save those for another day. What just happened is that BMY announced pricing to begin negotiations with insurers and other large customers (governments here and abroad) about what they will pay. The decision makers who determine "formularies" will feel compelled to include it as a new "standard of care" along with one or more of the BRAF treatments. The buyers should be able to negotiate the price down significantly to $15,000 or so, or maybe $10,000. If you are more than a casual observerer about how Pharma operates, than what is happening should be no surprise. BMY attempting to "sit on" MDX1106 and 1105 should perhaps be an even larger concern for the Melanoma community, since they each look more promising than Ipi/Yervoy/MDX010. The system and players in it may be flawed, but it is the only system we have in the US for now – for better or worse (or both). BMY will try to minimize PR blowback with discounting and assistance for those who lack insurance and sufficient resources, or the combination.
The fact that BMY attempting to "sit on" MDX1106 and 1105 should perhaps be an even larger concern for the Melanoma community, since they each look more promising than Ipi/Yervoy/MDX010. BMY first wants to recover its costs of developing Ipi, which is rational from their business standpoint, but not defensible from a medical and ethical standpoint. I have my own issues with the system, but will save those for another day.
Best to All,
Jim
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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 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 23, 2011 at 3:23 am
Hi Val,
The good news for me about Ipi is that it did seem to work – for 5 months anyway – and I am glad I did it. I think my experience is not out of line with the data, but the "combined effect" with Temador was slim to none. In this environment where combinations of treatments are being tried with increasing frequency, some will work and some won't. It sure does seem like the reserchers are thowing a lot of spagetti against the wall these days, so some ideas are bound to be helpful.
I have a BRAF 597 mutation, so I am of minimal interest to the BRAF guys, but I hear that Plex/Roche is planning to do two seperate trials in the next few months using their formulation against "other than 600Es" and brain mets. Any one have any info on this subject? I am please that I was admitted to my current trial with a MEK Inhibitor, although it is a small Phase I Trial. Flying to LA twice a week is not all fun either!
IL2, Chemo, and Biochemo are still on my list but I have chosen to explore other alternatives first. When I was first diagnosed and told my only options were those, I decided that I was going to try all the "new" treaments I could access before the "traditional" or approved ones. Not sure if that has been the best course, since new is not necessarily better, but that has been my chosen path. I think you are aware that out faithful board poster Jimmy B is a strong advocate of IL2 following Ipi, and it seem to me to be worth considering. I don't understand, however, why you cannot get IL2 as a treatment up North without entering a randomized trial againt dacarbazine. Is that the only option in Canada? As you may know, IL2 is widely available in the States, both individually or in combination (Biochemo). I am not promoting the the system down here at all with these remarks.
My arm is better, although still somewhat painful. I start physical therapy nest week so I can get out and play golf again in June. I actually got hit by a big guy on skiis in early February. There are absoutely zero consequences in Colorado for people who go too fast, out of control, and try to kill you or your kids – that needs to change. Anyway, I took my two daughters up to Winter Park today and was blessed to be with my beautiful snow angels. A gorgeous day in the mountains makes me feel closer to God, and reminds me how lucky I am for every day I have on earth. My spirit will forever dwell there.
Best,
Jim
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- April 23, 2011 at 3:23 am
Hi Val,
The good news for me about Ipi is that it did seem to work – for 5 months anyway – and I am glad I did it. I think my experience is not out of line with the data, but the "combined effect" with Temador was slim to none. In this environment where combinations of treatments are being tried with increasing frequency, some will work and some won't. It sure does seem like the reserchers are thowing a lot of spagetti against the wall these days, so some ideas are bound to be helpful.
I have a BRAF 597 mutation, so I am of minimal interest to the BRAF guys, but I hear that Plex/Roche is planning to do two seperate trials in the next few months using their formulation against "other than 600Es" and brain mets. Any one have any info on this subject? I am please that I was admitted to my current trial with a MEK Inhibitor, although it is a small Phase I Trial. Flying to LA twice a week is not all fun either!
IL2, Chemo, and Biochemo are still on my list but I have chosen to explore other alternatives first. When I was first diagnosed and told my only options were those, I decided that I was going to try all the "new" treaments I could access before the "traditional" or approved ones. Not sure if that has been the best course, since new is not necessarily better, but that has been my chosen path. I think you are aware that out faithful board poster Jimmy B is a strong advocate of IL2 following Ipi, and it seem to me to be worth considering. I don't understand, however, why you cannot get IL2 as a treatment up North without entering a randomized trial againt dacarbazine. Is that the only option in Canada? As you may know, IL2 is widely available in the States, both individually or in combination (Biochemo). I am not promoting the the system down here at all with these remarks.
My arm is better, although still somewhat painful. I start physical therapy nest week so I can get out and play golf again in June. I actually got hit by a big guy on skiis in early February. There are absoutely zero consequences in Colorado for people who go too fast, out of control, and try to kill you or your kids – that needs to change. Anyway, I took my two daughters up to Winter Park today and was blessed to be with my beautiful snow angels. A gorgeous day in the mountains makes me feel closer to God, and reminds me how lucky I am for every day I have on earth. My spirit will forever dwell there.
Best,
Jim
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- April 5, 2011 at 6:02 am
Douglas,
MDX 1105 has shown higher effacacy than either MDX1106 or MDX010, according to Dr. Hwu (my former Onc). The number of participants to date is small but very impressive. You could do a lot worse – I would do it if it were available to me.
Best Wishes,
Jim
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- April 5, 2011 at 6:02 am
Douglas,
MDX 1105 has shown higher effacacy than either MDX1106 or MDX010, according to Dr. Hwu (my former Onc). The number of participants to date is small but very impressive. You could do a lot worse – I would do it if it were available to me.
Best Wishes,
Jim
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