MDX-1106 part 2
Comments
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MDX-1106 TRIALBENLBENTLEY said:MDX 1106 TRIAL
Hello FOXHD I was scanning the net and found your post about the drug MDX 1106. I am also on a trial with MDX 1106 and it sounds like the same one. Having good reports from my scans and very little side effects. Proverbs 27:1
You're right not to tempt Providence by premature assumptions but you must admit it looks pretty good for you guys so far and so it's giving renewed hope to many.
Fox has launched a third thread, astonishingly labelled "MDX, part 3" and you might want to post your very welcome news there too, so that the latest messages about it are kept together in chronological order. You'll get to it at
http://csn.cancer.org/node/236861
Your news bears out Fox's impression that the trial is proving a great success and we all hope for both of you and for future countless others it will turn out to be as good as it currently looks.0 -
trialssunlover_56 said:Fox
Hi Fox.. I am not in that trial but was asked to try Everolimus. I am stage 2 grade 1 RCC (clear) Yes I was scared of all the side effect but realize they are the same as many meds even over the oucnter drugs. The one thing that differs with the drug they want me to take is that it also kills good cells. From what I read, Everolimus can increase your risk for not only infections but also increases your risk of lymphoma and skin cancer. That is what is giving me second thought as to whether or not I want to participate. Anyone eles in this treatment with low stage RCC?
Clinical trials are an interesting thing. The scientists need volunteers to prove or disprove the benefits of new drugs. Therefore, there is a risk that a volunteer might not be given an equal chance at benefitting from a drug. I was offered a votrient trial last year but passed on it because I saw no benefit to me but good chances that I would only be a test subject. Having been offered the MDX trial was different. No placebos. Only a chance for improving if it worked. So far it has worked great! Infusion tomorrow, next scan in 3 weeks.0 -
trialsfoxhd said:trials
Clinical trials are an interesting thing. The scientists need volunteers to prove or disprove the benefits of new drugs. Therefore, there is a risk that a volunteer might not be given an equal chance at benefitting from a drug. I was offered a votrient trial last year but passed on it because I saw no benefit to me but good chances that I would only be a test subject. Having been offered the MDX trial was different. No placebos. Only a chance for improving if it worked. So far it has worked great! Infusion tomorrow, next scan in 3 weeks.
Here are 2 more comments. First, I kind of forgot that had I begun the votrient study last year,..(yep!, it's May. A whole year since offered the trial)..then I had the potential miserable side effects and risked spending what was probably gonna be my last summer alive, feeling miserable. I opted to enjoy my last summer playing golf and riding my bike. Good choice because I enjoyed my summer and in the fall found out I might have only 6 months to live.I was a hurting puppy by december and january. Once my trial of MDX started I began my miracleles (sp?)improvement. Minor setback with 2 skin cancers, but they both be gone by next month....So, I went for infusion #8 today. Doctor says blood work is excellent. Tells me that my timing to get into the study was perfect as a couple weeks earlier or later and I would have had to get something else or most likely Interleuken. She says she expects me to live a long life. She says that only 1 in 3 respond like I do and I am the one. She told me how I brighten her day. I told her she can call me "Sunshine" and to call me anytime she needs a morale booster. She gave me another big hug...........So here's to luck and not jumping on the first trial drug being offered if it does not serve your purpose.0 -
foxfoxhd said:trials
Here are 2 more comments. First, I kind of forgot that had I begun the votrient study last year,..(yep!, it's May. A whole year since offered the trial)..then I had the potential miserable side effects and risked spending what was probably gonna be my last summer alive, feeling miserable. I opted to enjoy my last summer playing golf and riding my bike. Good choice because I enjoyed my summer and in the fall found out I might have only 6 months to live.I was a hurting puppy by december and january. Once my trial of MDX started I began my miracleles (sp?)improvement. Minor setback with 2 skin cancers, but they both be gone by next month....So, I went for infusion #8 today. Doctor says blood work is excellent. Tells me that my timing to get into the study was perfect as a couple weeks earlier or later and I would have had to get something else or most likely Interleuken. She says she expects me to live a long life. She says that only 1 in 3 respond like I do and I am the one. She told me how I brighten her day. I told her she can call me "Sunshine" and to call me anytime she needs a morale booster. She gave me another big hug...........So here's to luck and not jumping on the first trial drug being offered if it does not serve your purpose.
What what an awesome and inspiring story. I am so happy for you "Sunshine" :-) and I am proud to know you in this forum.. thanks0 -
"sunshine"sunlover_56 said:fox
What what an awesome and inspiring story. I am so happy for you "Sunshine" :-) and I am proud to know you in this forum.. thanks
Thank you Sunlover. Unfortunately, I can not be a sunlover like I was anymore. I am going to try to delay my melanoma surgery my head a while I do a couple motorcycle trips this summer. I'm thinking my drug will take care of it,..but we'll see......AND..........it is excellent to know you too. That is why we stay on site. To support each other. FLY..
Fox loves you!0 -
sunshine, sunloverfoxhd said:"sunshine"
Thank you Sunlover. Unfortunately, I can not be a sunlover like I was anymore. I am going to try to delay my melanoma surgery my head a while I do a couple motorcycle trips this summer. I'm thinking my drug will take care of it,..but we'll see......AND..........it is excellent to know you too. That is why we stay on site. To support each other. FLY..
Fox loves you!
Sundodger here. Fox, shouldn't this be going onto your MDX-1106, part 3 thread? I'm getting giddy trying to get the chronology straight!
Is the 1 in 3 response rate you've been quoted specifically for the trial you're on? If there are others who are responding like you I guess that's great news but I fear there's only one Fox.0 -
Yep should be part 3Texas_wedge said:sunshine, sunlover
Sundodger here. Fox, shouldn't this be going onto your MDX-1106, part 3 thread? I'm getting giddy trying to get the chronology straight!
Is the 1 in 3 response rate you've been quoted specifically for the trial you're on? If there are others who are responding like you I guess that's great news but I fear there's only one Fox.
..But it kind of fell here due to the previous responses. I asked again about how others are doing in this MDX study.. But they are elusive with their answers for confidentiality reasons. But, the way they respond to me, and the body language I receive tells me that I am doing really special. They have a smile, a glow, a sense of goal acomplishment. I can almost see in them that they like seeing me as it confirms why they do this.0 -
Yep should be part 3Texas_wedge said:sunshine, sunlover
Sundodger here. Fox, shouldn't this be going onto your MDX-1106, part 3 thread? I'm getting giddy trying to get the chronology straight!
Is the 1 in 3 response rate you've been quoted specifically for the trial you're on? If there are others who are responding like you I guess that's great news but I fear there's only one Fox.
..But it kind of fell here due to the previous responses. I asked again about how others are doing in this MDX study.. But they are elusive with their answers for confidentiality reasons. But, the way they respond to me, and the body language I receive tells me that I am doing really special. They have a smile, a glow, a sense of goal acomplishment. I can almost see in them that they like seeing me as it confirms why they do this.0 -
Yes, it must be enormously gratifying for them but still not half as much as for you! I don't suppose BMS are grieving either - it should be about to generate a revenue stream for them that will fund a lot more R & D - good for everyone a real win-win situation.foxhd said:Yep should be part 3
..But it kind of fell here due to the previous responses. I asked again about how others are doing in this MDX study.. But they are elusive with their answers for confidentiality reasons. But, the way they respond to me, and the body language I receive tells me that I am doing really special. They have a smile, a glow, a sense of goal acomplishment. I can almost see in them that they like seeing me as it confirms why they do this.0 -
Hi foxhd
I am also in the MDX 1106 trial. Started the trial at MUSC in Charleston,SC Nov. 2011 and have been moved back to Vanderbilt in Nashville,TN where I started the fight with RCC Stage 4 in June,2007. This is my 3rd clinical trial and I have been responding very well to this treatment with minor side effects (joint pain being the worst). Tomorrow I will receive my 10th infusion, the first treatment at Vandy. Do you know any of the other patients on this trial? I am also a golfer and a retired biker after 43 years on the road. May God bless all that are fighting cancer.0 -
Hello BENLBENTLEYBENLBENTLEY said:Hi foxhd
I am also in the MDX 1106 trial. Started the trial at MUSC in Charleston,SC Nov. 2011 and have been moved back to Vanderbilt in Nashville,TN where I started the fight with RCC Stage 4 in June,2007. This is my 3rd clinical trial and I have been responding very well to this treatment with minor side effects (joint pain being the worst). Tomorrow I will receive my 10th infusion, the first treatment at Vandy. Do you know any of the other patients on this trial? I am also a golfer and a retired biker after 43 years on the road. May God bless all that are fighting cancer.
Good to talk to you. In a manner of speaking. First, Nice to see you are 4 years stage 4 RCC. It keeps my enthusiasm up! So far just you me and Alice's husband are on MDX on this board. Her husband has a combo with votrient. He just started. I get my 9th infusion next weds. I've had no previous treatment except nephrectomy in march 2011. My mets were pretty significant by the first of the year. But my response has been amazing. I'll have more to say about this next week as I get another scan this friday. My only side effect is fatigue. But I can work through that. They are watching my thyroid for this since I am generally very active. It seems golf and motorcycles are a common theme here. Or maybe thats just what men over 50 do. I am on the highest dose of 10mg/kg every 3 weeks. Seems to easy . That scares me. Seems the response rate is around 30% And I am that lucky one in 3 at Yale. Keep us up to date. I'll start an MDX part 4 next week.0 -
MDX 1106BENLBENTLEY said:Hi foxhd
I am also in the MDX 1106 trial. Started the trial at MUSC in Charleston,SC Nov. 2011 and have been moved back to Vanderbilt in Nashville,TN where I started the fight with RCC Stage 4 in June,2007. This is my 3rd clinical trial and I have been responding very well to this treatment with minor side effects (joint pain being the worst). Tomorrow I will receive my 10th infusion, the first treatment at Vandy. Do you know any of the other patients on this trial? I am also a golfer and a retired biker after 43 years on the road. May God bless all that are fighting cancer.
Welcome Ben. Like Fox said, my husband started the MDX1106/Votrient trial on May 10, so it's a little soon to know about response but we're sure enthusiastic and hopeful. My husband had the HDIL2 treatment prior to starting this trial but his response did not merit continuation. He is a stage 4/grade 4 clear cell, diagnosed October 2011, nephrectomy in November 2011, and HDIL2 January/February 2012.
Sure hope this board keeps the excellent MDX 1106 responses coming. Fox has been our inspiration.0 -
Hi Sunshinefoxhd said:trials
Here are 2 more comments. First, I kind of forgot that had I begun the votrient study last year,..(yep!, it's May. A whole year since offered the trial)..then I had the potential miserable side effects and risked spending what was probably gonna be my last summer alive, feeling miserable. I opted to enjoy my last summer playing golf and riding my bike. Good choice because I enjoyed my summer and in the fall found out I might have only 6 months to live.I was a hurting puppy by december and january. Once my trial of MDX started I began my miracleles (sp?)improvement. Minor setback with 2 skin cancers, but they both be gone by next month....So, I went for infusion #8 today. Doctor says blood work is excellent. Tells me that my timing to get into the study was perfect as a couple weeks earlier or later and I would have had to get something else or most likely Interleuken. She says she expects me to live a long life. She says that only 1 in 3 respond like I do and I am the one. She told me how I brighten her day. I told her she can call me "Sunshine" and to call me anytime she needs a morale booster. She gave me another big hug...........So here's to luck and not jumping on the first trial drug being offered if it does not serve your purpose.
Glad to hear you are sailing along Fox but that Sunshine name seems like you are getting a little soft here,i am just curious if i had met you 2 years ago and called you Sunshine then held out my arms what your reaction would have been.Heck i have even noticed over the last few months even ole Texas from across the pond has evolved into a Big Teddy Bear.Not to stir anything up but i never believed in the word luck,i believe at times some of us have been blessed or a little more fortunate but luck for me is for gamblers0 -
MDX-1106alice124 said:MDX 1106
Welcome Ben. Like Fox said, my husband started the MDX1106/Votrient trial on May 10, so it's a little soon to know about response but we're sure enthusiastic and hopeful. My husband had the HDIL2 treatment prior to starting this trial but his response did not merit continuation. He is a stage 4/grade 4 clear cell, diagnosed October 2011, nephrectomy in November 2011, and HDIL2 January/February 2012.
Sure hope this board keeps the excellent MDX 1106 responses coming. Fox has been our inspiration.
Alice, have you had any informed comment on latency of effects of the various RCC drugs? They could be expected to vary widely in respect of how soon before they start to take effect (like anti-depressants) and how long after cessation they may still have a therapeutic effect.
Fox - you'd better start MDX part 4 soon or everything will keep going on to part 2 instead of part 3 and the sequence of events will be more and more confusing.0 -
Hi Foxfoxhd said:Yep should be part 3
..But it kind of fell here due to the previous responses. I asked again about how others are doing in this MDX study.. But they are elusive with their answers for confidentiality reasons. But, the way they respond to me, and the body language I receive tells me that I am doing really special. They have a smile, a glow, a sense of goal acomplishment. I can almost see in them that they like seeing me as it confirms why they do this.
I always wanted to ask a little more about your cancer.If i remember correctly your original dx was RCC stage 3 also the original scans showed no spread of the disease.But then 6 months later on your follow up scans you were downgraded to a stage 4 due to mets to the lungs and also the bones.I am curious about the original path report relating to grade type size of original tumor and any other characteristics of your cancer since you have responded so well to the MDX treatments.I have always beeen intrigued why some people respond differently than others to certain drug therapies and i sometimes feel the genetic makeup of the cancer a person might have determines the reponse they might recieve from different drug therapies. Thank You Fox0 -
latent benefit HDIL2Texas_wedge said:MDX-1106
Alice, have you had any informed comment on latency of effects of the various RCC drugs? They could be expected to vary widely in respect of how soon before they start to take effect (like anti-depressants) and how long after cessation they may still have a therapeutic effect.
Fox - you'd better start MDX part 4 soon or everything will keep going on to part 2 instead of part 3 and the sequence of events will be more and more confusing.
I have found nothing specific on the latent benefit of HDIL2, but I have it noted as a question to ask John's oncologist next visit.
In trying to research the latent numbers, I again, as I do quite often, come away with more questions than I answer. It made me wonder how John's HDIL2 response would be noted in medical terminology in reference to HDIL2. Initially, his doctor referred to it as a mixed response. 1 MED reduced in size; 3 increased in size; and 2 new meds. I guess an argument could be made that growth would have been more severe without HDIL 2, particularly in light of his uptick in his tumor activity since March 15.0 -
latent benefit HDIL2Texas_wedge said:MDX-1106
Alice, have you had any informed comment on latency of effects of the various RCC drugs? They could be expected to vary widely in respect of how soon before they start to take effect (like anti-depressants) and how long after cessation they may still have a therapeutic effect.
Fox - you'd better start MDX part 4 soon or everything will keep going on to part 2 instead of part 3 and the sequence of events will be more and more confusing.
I have found nothing specific on the latent benefit of HDIL2, but I have it noted as a question to ask John's oncologist next visit.
In trying to research the latent numbers, I again, as I do quite often, come away with more questions than I answer. It made me wonder how John's HDIL2 response would be noted in medical terminology in reference to HDIL2. Initially, his doctor referred to it as a mixed response. 1 MED reduced in size; 3 increased in size; and 2 new meds. I guess an argument could be made that growth would have been more severe without HDIL 2, particularly in light of his uptick in tumor activity since March 15.0 -
latent benefit HDIL2-sorry for triiplicationTexas_wedge said:MDX-1106
Alice, have you had any informed comment on latency of effects of the various RCC drugs? They could be expected to vary widely in respect of how soon before they start to take effect (like anti-depressants) and how long after cessation they may still have a therapeutic effect.
Fox - you'd better start MDX part 4 soon or everything will keep going on to part 2 instead of part 3 and the sequence of events will be more and more confusing.0 -
Sunshine Foxfoxhd said:trials
Here are 2 more comments. First, I kind of forgot that had I begun the votrient study last year,..(yep!, it's May. A whole year since offered the trial)..then I had the potential miserable side effects and risked spending what was probably gonna be my last summer alive, feeling miserable. I opted to enjoy my last summer playing golf and riding my bike. Good choice because I enjoyed my summer and in the fall found out I might have only 6 months to live.I was a hurting puppy by december and january. Once my trial of MDX started I began my miracleles (sp?)improvement. Minor setback with 2 skin cancers, but they both be gone by next month....So, I went for infusion #8 today. Doctor says blood work is excellent. Tells me that my timing to get into the study was perfect as a couple weeks earlier or later and I would have had to get something else or most likely Interleuken. She says she expects me to live a long life. She says that only 1 in 3 respond like I do and I am the one. She told me how I brighten her day. I told her she can call me "Sunshine" and to call me anytime she needs a morale booster. She gave me another big hug...........So here's to luck and not jumping on the first trial drug being offered if it does not serve your purpose.
Hi Fox! Reading you post today sure put a lot of Sunshine in my day..I just love reading about how well you are doing..I have visions of you riding your bike cross county this summer enjoying everything life has to offer..My husband was a die hard biker and Lived to Ride as they say..I sure do miss hearing his bike roll up..
Hey! I sure would love to see some pics from your bike trip this summer..If you don't mind..
Till next time..
Littledarlin..0
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