› Forums › General Melanoma Community › Jim in Denver, how are you doing?
- This topic has 12 replies, 4 voices, and was last updated 13 years, 7 months ago by
Jim in Denver.
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- April 17, 2011 at 4:37 pm
Hi Jim
I haven't seen you on the bulletin board for a while and wondering how you are doing with the ipilimumab/temodar trial. I have always appreciated your support and wise counsel. Just to let you know, I'm thinking of you. Val xx (2nd round of ipi/yervoy)
Hi Jim
I haven't seen you on the bulletin board for a while and wondering how you are doing with the ipilimumab/temodar trial. I have always appreciated your support and wise counsel. Just to let you know, I'm thinking of you. Val xx (2nd round of ipi/yervoy)
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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 8:11 pm
Jim,
It is so good to hear from you. I hope your new treatment works well for you.
This must be a great trial because you are so intelligent & know alot about drugs. I did not know that MEK inhibitor come in the form of infusions. Most people take pills.
I was wondering why you decided not to do a BRAF/MEK combo?
Take care & hoping for great scans for you!
Jan
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- April 20, 2011 at 8:11 pm
Jim,
It is so good to hear from you. I hope your new treatment works well for you.
This must be a great trial because you are so intelligent & know alot about drugs. I did not know that MEK inhibitor come in the form of infusions. Most people take pills.
I was wondering why you decided not to do a BRAF/MEK combo?
Take care & hoping for great scans for you!
Jan
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- April 20, 2011 at 9:04 pm
Jim, it's nice to hear from you. I've been wondering myself how things were going with you. Glad to hear you got some skiing in during all of this, sorry to hear about the fracture!
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- April 20, 2011 at 9:04 pm
Jim, it's nice to hear from you. I've been wondering myself how things were going with you. Glad to hear you got some skiing in during all of this, sorry to hear about the fracture!
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- April 20, 2011 at 10:11 pm
Hi Jim..so happy to hear from you, and very, very disappointed that ipilimumab wasn't the solution for you!
Well you have certainly been proactive in selecting your next current treatment. I am assuming it is only for B-RAF positive (sigh, I'm B-RAF negative)…it sounds quite interesting. Are you expecting this trial to perhaps rid you of the subqs, intestinal, and very small brain "focii"….? (have you heard of anything to that effect). Wondering why you didn't decide on IL2 ? or are you holding on to that as another option? When you're not in so much pain…would like to know your reasoning for my own selfish purposes…I'm thinking IL2 if this round of ipi which I started in March doesn't work (of course, it's a two-arm option with dicarbazine the other, a game of Russian roulette).
Sometimes skiing is not conducive to health, I decided on cross country a few years ago and now have downsized to snowshoeing…I absolutely hate falling. Be careful!! Val xx
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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 20, 2011 at 10:11 pm
Hi Jim..so happy to hear from you, and very, very disappointed that ipilimumab wasn't the solution for you!
Well you have certainly been proactive in selecting your next current treatment. I am assuming it is only for B-RAF positive (sigh, I'm B-RAF negative)…it sounds quite interesting. Are you expecting this trial to perhaps rid you of the subqs, intestinal, and very small brain "focii"….? (have you heard of anything to that effect). Wondering why you didn't decide on IL2 ? or are you holding on to that as another option? When you're not in so much pain…would like to know your reasoning for my own selfish purposes…I'm thinking IL2 if this round of ipi which I started in March doesn't work (of course, it's a two-arm option with dicarbazine the other, a game of Russian roulette).
Sometimes skiing is not conducive to health, I decided on cross country a few years ago and now have downsized to snowshoeing…I absolutely hate falling. Be careful!! Val xx
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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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