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- This topic has 60 replies, 12 voices, and was last updated 12 years, 2 months ago by
s Mom.
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- February 5, 2012 at 3:34 pm
After almost 1 year of being NED, my son has now developed tumors in both liver and lungs. Although I don't post often, I am always checking out this board. I am sure I will be posting a lot more since I have so many questions about the therapies Jeff may soon face. This board is a great source of information, but also a great place to find hope and strength. My son has those in abundance!
After almost 1 year of being NED, my son has now developed tumors in both liver and lungs. Although I don't post often, I am always checking out this board. I am sure I will be posting a lot more since I have so many questions about the therapies Jeff may soon face. This board is a great source of information, but also a great place to find hope and strength. My son has those in abundance!
Jeffrey will be starting IL2 very soon, and I know Jane from Maine has a great on-line resource (which I scoured for information), but any other information about others' experiences with IL2 would be greatly appreciated. Any complete responders out there? We are so hopeful Jeff will be one of the lucky ones. If not, we do have a system in place for further therapies (he has the BRAF mutation). It's scary to think that this treatment won't work, but I guess that is what we have to face – what to do next if it doesn't work and how to do it fast.
I am interested in anti-PD1 trials – it looks very promising and seems less toxic than Yervoy. I know Lynn is on an anti-PD1 trial with Dr. Weber at Moffit. What are your side effects? I know you are doing well…complete response? Anyone else on anti-PD1?
I guess I will try to post more often as we travel down this road…it's one I never wanted to be on.
Thanks in advance,
Jeff's Mom
- Replies
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- February 5, 2012 at 3:51 pm
Oh, I am so sorry to hear that. I think we were on the board at the same time last year with similar situations, and now mine has also spread to bone, liver, and subq sites. I finished one week of IL2 and am hoping for the best. Good luck to Jeff!
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- February 5, 2012 at 3:53 pm
Hi, I am sorry to hear about the recurrance but I see Jeff is with Dr. Kaufman at Rush and he is an excellent doctor and it looks like he will have many options. There are many people here who are having good responses with the treatmetns you are looking at and I will be keeping Jeff in my thoughts & prayers. May the best treatment be found fast!
Lori
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- February 5, 2012 at 3:53 pm
Hi, I am sorry to hear about the recurrance but I see Jeff is with Dr. Kaufman at Rush and he is an excellent doctor and it looks like he will have many options. There are many people here who are having good responses with the treatmetns you are looking at and I will be keeping Jeff in my thoughts & prayers. May the best treatment be found fast!
Lori
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- February 5, 2012 at 3:53 pm
Hi, I am sorry to hear about the recurrance but I see Jeff is with Dr. Kaufman at Rush and he is an excellent doctor and it looks like he will have many options. There are many people here who are having good responses with the treatmetns you are looking at and I will be keeping Jeff in my thoughts & prayers. May the best treatment be found fast!
Lori
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- February 6, 2012 at 1:49 am
What a hard place for a mom to be. I'm sorry he is struggling. I have been NED for 7 yrs, so I am not up on all the new treatments. I wish you and Jeff the best luck in picking a treatment that will keep him safe. My prayers to both of you. BethA 3/B
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- February 6, 2012 at 1:49 am
What a hard place for a mom to be. I'm sorry he is struggling. I have been NED for 7 yrs, so I am not up on all the new treatments. I wish you and Jeff the best luck in picking a treatment that will keep him safe. My prayers to both of you. BethA 3/B
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- February 6, 2012 at 1:49 am
What a hard place for a mom to be. I'm sorry he is struggling. I have been NED for 7 yrs, so I am not up on all the new treatments. I wish you and Jeff the best luck in picking a treatment that will keep him safe. My prayers to both of you. BethA 3/B
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- February 6, 2012 at 10:35 am
Sorry to read that your son has developed lung and liver mets. I think that surgery, if possible, is the preferred way to reduce tumour load. Ideally, a surgical oncologist should be consulted about this.
It is encouraging that Jeffrey will be starting IL-2 soon. When one is considering systemic treatments in general, it appears that the best options include TIL treatment (adoptive cell therapy), Yervoy (ipi), IL-2 (interleukin-2), or an anti PD-1 (MDX-1106) clinical trial. Unfortunately, it seems that early BRAF inhibitors such as Zelboraf have problems with their effectiveness and therefore more research is needed.
Note that IL-2 before or after Yervoy can make a good combination. Early results of Anti PD-1 trials seem to be very promising from what I have read.
Hope this helps
Frank from Australia
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- February 6, 2012 at 8:21 pm
Frank,
Why do you say that early Braf inhibitors such as Zelboraf have problems with their effectiveness? I think that despite the fact they don't last long for the majority of responders (there are some durable responses) they have a place because no other drug can reduce tumor load as quickly and in such a high percentage of braf+ patients. In some patients it can lower tumor burden enough for surgery to be an option as well.
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- February 6, 2012 at 8:21 pm
Frank,
Why do you say that early Braf inhibitors such as Zelboraf have problems with their effectiveness? I think that despite the fact they don't last long for the majority of responders (there are some durable responses) they have a place because no other drug can reduce tumor load as quickly and in such a high percentage of braf+ patients. In some patients it can lower tumor burden enough for surgery to be an option as well.
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- February 6, 2012 at 8:21 pm
Frank,
Why do you say that early Braf inhibitors such as Zelboraf have problems with their effectiveness? I think that despite the fact they don't last long for the majority of responders (there are some durable responses) they have a place because no other drug can reduce tumor load as quickly and in such a high percentage of braf+ patients. In some patients it can lower tumor burden enough for surgery to be an option as well.
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- February 7, 2012 at 3:51 am
Here are a couple of links for more info about problems with Zelboraf (also known as
PLX4032 or vemurafenib).http://www.melanoma.org/community/mpip-melanoma-patients-information-page/vemurafenib-plx4032-promotes-epigenetic-changes-me#comment-29768
(If clicking on the link doesn't work, just copy and paste it into the address bar of
your browser).http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full
See: "Vemurafenib (PLX4032) promotes epigenetic changes in melanoma cells leading to
development of more invasive metastatic disease" (Near top of page).Best wishes
Frank from Australia
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- February 7, 2012 at 3:51 am
Here are a couple of links for more info about problems with Zelboraf (also known as
PLX4032 or vemurafenib).http://www.melanoma.org/community/mpip-melanoma-patients-information-page/vemurafenib-plx4032-promotes-epigenetic-changes-me#comment-29768
(If clicking on the link doesn't work, just copy and paste it into the address bar of
your browser).http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full
See: "Vemurafenib (PLX4032) promotes epigenetic changes in melanoma cells leading to
development of more invasive metastatic disease" (Near top of page).Best wishes
Frank from Australia
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- February 7, 2012 at 3:51 am
Here are a couple of links for more info about problems with Zelboraf (also known as
PLX4032 or vemurafenib).http://www.melanoma.org/community/mpip-melanoma-patients-information-page/vemurafenib-plx4032-promotes-epigenetic-changes-me#comment-29768
(If clicking on the link doesn't work, just copy and paste it into the address bar of
your browser).http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full
See: "Vemurafenib (PLX4032) promotes epigenetic changes in melanoma cells leading to
development of more invasive metastatic disease" (Near top of page).Best wishes
Frank from Australia
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- February 6, 2012 at 10:35 am
Sorry to read that your son has developed lung and liver mets. I think that surgery, if possible, is the preferred way to reduce tumour load. Ideally, a surgical oncologist should be consulted about this.
It is encouraging that Jeffrey will be starting IL-2 soon. When one is considering systemic treatments in general, it appears that the best options include TIL treatment (adoptive cell therapy), Yervoy (ipi), IL-2 (interleukin-2), or an anti PD-1 (MDX-1106) clinical trial. Unfortunately, it seems that early BRAF inhibitors such as Zelboraf have problems with their effectiveness and therefore more research is needed.
Note that IL-2 before or after Yervoy can make a good combination. Early results of Anti PD-1 trials seem to be very promising from what I have read.
Hope this helps
Frank from Australia
-
- February 6, 2012 at 10:35 am
Sorry to read that your son has developed lung and liver mets. I think that surgery, if possible, is the preferred way to reduce tumour load. Ideally, a surgical oncologist should be consulted about this.
It is encouraging that Jeffrey will be starting IL-2 soon. When one is considering systemic treatments in general, it appears that the best options include TIL treatment (adoptive cell therapy), Yervoy (ipi), IL-2 (interleukin-2), or an anti PD-1 (MDX-1106) clinical trial. Unfortunately, it seems that early BRAF inhibitors such as Zelboraf have problems with their effectiveness and therefore more research is needed.
Note that IL-2 before or after Yervoy can make a good combination. Early results of Anti PD-1 trials seem to be very promising from what I have read.
Hope this helps
Frank from Australia
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- February 6, 2012 at 2:50 pm
You may want to look into traveling to the east coast for therapy.
Study ID (Protocol Number) CA209-004
Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV MalignantMelanoma
Combination of Yervoy Plus Anti-PD-1
STUDY LOCATIONS*
Recruiting
Local Institution
Los Angeles, CA90025Memorial Sloan Kettering Cancer Center
New York, NY 10021
RecruitingYale University School Of Medicine
New Haven, CT06520
RecruitingPatients treated with Anti-CTLA-4 showed a statistically significant decrease in the median percentage of Treg cells by Day 28 of therapy (5.8% vs.3.6%) “Biologic and Immunomodulatory Events after CTLA-4 Blockade with Ticilimumab (Yervoy) in Patients with Advanced Malignant Melanoma” et al Luis H. Camacho 2006.
Also,after treatment the treated patients had a significantly higher median percentage of resting CD4_CD25_ T cells that coexpressed PD-1 compared with control subjects (66.4% vs. 25.0%). This mean the Anti-CTLA-4 therapy unregulated the PD-1 on resting T-cells. This is an unwanted effect, the upregulation PD-1 is known to cause T-cell exhaustion.
This is why the combination of Anti-PD-1 and Anti-CTLA-4 would be a more synergistic treatment for Melanoma.
Best regards,
Jimmy B
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- February 6, 2012 at 2:50 pm
You may want to look into traveling to the east coast for therapy.
Study ID (Protocol Number) CA209-004
Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV MalignantMelanoma
Combination of Yervoy Plus Anti-PD-1
STUDY LOCATIONS*
Recruiting
Local Institution
Los Angeles, CA90025Memorial Sloan Kettering Cancer Center
New York, NY 10021
RecruitingYale University School Of Medicine
New Haven, CT06520
RecruitingPatients treated with Anti-CTLA-4 showed a statistically significant decrease in the median percentage of Treg cells by Day 28 of therapy (5.8% vs.3.6%) “Biologic and Immunomodulatory Events after CTLA-4 Blockade with Ticilimumab (Yervoy) in Patients with Advanced Malignant Melanoma” et al Luis H. Camacho 2006.
Also,after treatment the treated patients had a significantly higher median percentage of resting CD4_CD25_ T cells that coexpressed PD-1 compared with control subjects (66.4% vs. 25.0%). This mean the Anti-CTLA-4 therapy unregulated the PD-1 on resting T-cells. This is an unwanted effect, the upregulation PD-1 is known to cause T-cell exhaustion.
This is why the combination of Anti-PD-1 and Anti-CTLA-4 would be a more synergistic treatment for Melanoma.
Best regards,
Jimmy B
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- February 6, 2012 at 2:50 pm
You may want to look into traveling to the east coast for therapy.
Study ID (Protocol Number) CA209-004
Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV MalignantMelanoma
Combination of Yervoy Plus Anti-PD-1
STUDY LOCATIONS*
Recruiting
Local Institution
Los Angeles, CA90025Memorial Sloan Kettering Cancer Center
New York, NY 10021
RecruitingYale University School Of Medicine
New Haven, CT06520
RecruitingPatients treated with Anti-CTLA-4 showed a statistically significant decrease in the median percentage of Treg cells by Day 28 of therapy (5.8% vs.3.6%) “Biologic and Immunomodulatory Events after CTLA-4 Blockade with Ticilimumab (Yervoy) in Patients with Advanced Malignant Melanoma” et al Luis H. Camacho 2006.
Also,after treatment the treated patients had a significantly higher median percentage of resting CD4_CD25_ T cells that coexpressed PD-1 compared with control subjects (66.4% vs. 25.0%). This mean the Anti-CTLA-4 therapy unregulated the PD-1 on resting T-cells. This is an unwanted effect, the upregulation PD-1 is known to cause T-cell exhaustion.
This is why the combination of Anti-PD-1 and Anti-CTLA-4 would be a more synergistic treatment for Melanoma.
Best regards,
Jimmy B
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- February 6, 2012 at 6:42 pm
Hi Jeff's mom,
I am so sorry he is going through this. I had Biochemotherapy with IL-2 in 2006. The treatment alone shrunk away my lung met. Previous to that I had a radical neck dissection. I have been NED for 5 years now and I was only given that treatment option. I have no knowledge of what happens with a new recurrence. I had my tumor genetically tested and it was negative for all the common classifications. I wish the very best for him and hope that there will be options to try. God bless you both. I just wanted to say that there are success stories out here. Feel free to check out my pat net, more of my story on that.
~Suzanne
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- February 6, 2012 at 6:42 pm
Hi Jeff's mom,
I am so sorry he is going through this. I had Biochemotherapy with IL-2 in 2006. The treatment alone shrunk away my lung met. Previous to that I had a radical neck dissection. I have been NED for 5 years now and I was only given that treatment option. I have no knowledge of what happens with a new recurrence. I had my tumor genetically tested and it was negative for all the common classifications. I wish the very best for him and hope that there will be options to try. God bless you both. I just wanted to say that there are success stories out here. Feel free to check out my pat net, more of my story on that.
~Suzanne
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- February 6, 2012 at 6:42 pm
Hi Jeff's mom,
I am so sorry he is going through this. I had Biochemotherapy with IL-2 in 2006. The treatment alone shrunk away my lung met. Previous to that I had a radical neck dissection. I have been NED for 5 years now and I was only given that treatment option. I have no knowledge of what happens with a new recurrence. I had my tumor genetically tested and it was negative for all the common classifications. I wish the very best for him and hope that there will be options to try. God bless you both. I just wanted to say that there are success stories out here. Feel free to check out my pat net, more of my story on that.
~Suzanne
-
- February 6, 2012 at 6:43 pm
Hi Jeff's mom,
I am so sorry he is going through this. I had Biochemotherapy with IL-2 in 2006. The treatment alone shrunk away my lung met. Previous to that I had a radical neck dissection. I have been NED for 5 years now and I was only given that treatment option. I have no knowledge of what happens with a new recurrence. I had my tumor genetically tested and it was negative for all the common classifications. I wish the very best for him and hope that there will be options to try. God bless you both. I just wanted to say that there are success stories out here. Feel free to check out my pat net, more of my story on that.
~Suzanne
-
- February 6, 2012 at 6:43 pm
Hi Jeff's mom,
I am so sorry he is going through this. I had Biochemotherapy with IL-2 in 2006. The treatment alone shrunk away my lung met. Previous to that I had a radical neck dissection. I have been NED for 5 years now and I was only given that treatment option. I have no knowledge of what happens with a new recurrence. I had my tumor genetically tested and it was negative for all the common classifications. I wish the very best for him and hope that there will be options to try. God bless you both. I just wanted to say that there are success stories out here. Feel free to check out my pat net, more of my story on that.
~Suzanne
-
- February 6, 2012 at 6:43 pm
Hi Jeff's mom,
I am so sorry he is going through this. I had Biochemotherapy with IL-2 in 2006. The treatment alone shrunk away my lung met. Previous to that I had a radical neck dissection. I have been NED for 5 years now and I was only given that treatment option. I have no knowledge of what happens with a new recurrence. I had my tumor genetically tested and it was negative for all the common classifications. I wish the very best for him and hope that there will be options to try. God bless you both. I just wanted to say that there are success stories out here. Feel free to check out my pat net, more of my story on that.
~Suzanne
-
- February 6, 2012 at 6:44 pm
Hi Jeff's mom,
I am so sorry he is going through this. I had Biochemotherapy with IL-2 in 2006. The treatment alone shrunk away my lung met. Previous to that I had a radical neck dissection. I have been NED for 5 years now and I was only given that treatment option. I have no knowledge of what happens with a new recurrence. I had my tumor genetically tested and it was negative for all the common classifications. I wish the very best for him and hope that there will be options to try. God bless you both. I just wanted to say that there are success stories out here. Feel free to check out my pat net, more of my story on that.
~Suzanne
-
- February 6, 2012 at 6:44 pm
Hi Jeff's mom,
I am so sorry he is going through this. I had Biochemotherapy with IL-2 in 2006. The treatment alone shrunk away my lung met. Previous to that I had a radical neck dissection. I have been NED for 5 years now and I was only given that treatment option. I have no knowledge of what happens with a new recurrence. I had my tumor genetically tested and it was negative for all the common classifications. I wish the very best for him and hope that there will be options to try. God bless you both. I just wanted to say that there are success stories out here. Feel free to check out my pat net, more of my story on that.
~Suzanne
-
- February 6, 2012 at 6:44 pm
Hi Jeff's mom,
I am so sorry he is going through this. I had Biochemotherapy with IL-2 in 2006. The treatment alone shrunk away my lung met. Previous to that I had a radical neck dissection. I have been NED for 5 years now and I was only given that treatment option. I have no knowledge of what happens with a new recurrence. I had my tumor genetically tested and it was negative for all the common classifications. I wish the very best for him and hope that there will be options to try. God bless you both. I just wanted to say that there are success stories out here. Feel free to check out my pat net, more of my story on that.
~Suzanne
-
- February 7, 2012 at 3:25 am
Hi, Jeff's mom,
I'm sorry your family is going through this. I'm one of those complete responders to IL-2. My tumors were in both lungs and various subcutaneous sites. I was treated at NIH back in 1992, had a complete response, and have had no recurrences ever since. This spring will mark 20 years since I began IL-2, and therapy lasted through the summer. It was not easy, with significant side effects, but it certainly worked out well for me, and I'm very grateful.
Let me know if you'd like more info about my experience, and best wishes.
Rick
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- February 7, 2012 at 3:25 am
Hi, Jeff's mom,
I'm sorry your family is going through this. I'm one of those complete responders to IL-2. My tumors were in both lungs and various subcutaneous sites. I was treated at NIH back in 1992, had a complete response, and have had no recurrences ever since. This spring will mark 20 years since I began IL-2, and therapy lasted through the summer. It was not easy, with significant side effects, but it certainly worked out well for me, and I'm very grateful.
Let me know if you'd like more info about my experience, and best wishes.
Rick
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- February 7, 2012 at 3:25 am
Hi, Jeff's mom,
I'm sorry your family is going through this. I'm one of those complete responders to IL-2. My tumors were in both lungs and various subcutaneous sites. I was treated at NIH back in 1992, had a complete response, and have had no recurrences ever since. This spring will mark 20 years since I began IL-2, and therapy lasted through the summer. It was not easy, with significant side effects, but it certainly worked out well for me, and I'm very grateful.
Let me know if you'd like more info about my experience, and best wishes.
Rick
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- February 7, 2012 at 10:45 pm
Two of our best known recent five year NED people are Jane from Maine and DebbieVa.
There ar many others that were either partial rsponders that delayed the growyh rate or that achieved benefit from normally less effective treatments after moving from IL-2 on to another treatment.
I too like the idea of trying a PD-1 trial. Do you know what Jeff's HLA ia?
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- February 7, 2012 at 10:45 pm
Two of our best known recent five year NED people are Jane from Maine and DebbieVa.
There ar many others that were either partial rsponders that delayed the growyh rate or that achieved benefit from normally less effective treatments after moving from IL-2 on to another treatment.
I too like the idea of trying a PD-1 trial. Do you know what Jeff's HLA ia?
-
- February 7, 2012 at 10:45 pm
Two of our best known recent five year NED people are Jane from Maine and DebbieVa.
There ar many others that were either partial rsponders that delayed the growyh rate or that achieved benefit from normally less effective treatments after moving from IL-2 on to another treatment.
I too like the idea of trying a PD-1 trial. Do you know what Jeff's HLA ia?
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- February 7, 2012 at 10:58 pm
I'm really sorry your son is going through melanoma. Even there are a few treatment's to attempt, IL-2 will cause some problems while he's on it and might not be able to go out and do much – until the treatment is over with.
I completed ipi back in January with no side effects. I was enjoying the family, meeting girlfriends for dinner and drinks and looking, activing and feeling fabulous. Yes, I had some minor things occur – itchy skin, small mash and then mild colitis which all went away after 2 days and some low steroids for 6 weeks. Believe me, it's been the easiest thing in the world and lots of other people have gotten through it very well. If your son has small, low disease, ipi needs about 3 months to start working, so using this type of drug is good when things are "early". However, I think IL-2 you'd know after 6 weeks if it's working.
I'm also loving Anti-PD1 showing up to 33% response which seems to be higher in most of them.
I'm wishing your son the best wishes! It willl be ultimately his choice, and I'm hoping one of these treatments will slow things down for a long time or disappear those mets!!
Lisa
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- February 7, 2012 at 10:58 pm
I'm really sorry your son is going through melanoma. Even there are a few treatment's to attempt, IL-2 will cause some problems while he's on it and might not be able to go out and do much – until the treatment is over with.
I completed ipi back in January with no side effects. I was enjoying the family, meeting girlfriends for dinner and drinks and looking, activing and feeling fabulous. Yes, I had some minor things occur – itchy skin, small mash and then mild colitis which all went away after 2 days and some low steroids for 6 weeks. Believe me, it's been the easiest thing in the world and lots of other people have gotten through it very well. If your son has small, low disease, ipi needs about 3 months to start working, so using this type of drug is good when things are "early". However, I think IL-2 you'd know after 6 weeks if it's working.
I'm also loving Anti-PD1 showing up to 33% response which seems to be higher in most of them.
I'm wishing your son the best wishes! It willl be ultimately his choice, and I'm hoping one of these treatments will slow things down for a long time or disappear those mets!!
Lisa
-
- February 7, 2012 at 10:58 pm
I'm really sorry your son is going through melanoma. Even there are a few treatment's to attempt, IL-2 will cause some problems while he's on it and might not be able to go out and do much – until the treatment is over with.
I completed ipi back in January with no side effects. I was enjoying the family, meeting girlfriends for dinner and drinks and looking, activing and feeling fabulous. Yes, I had some minor things occur – itchy skin, small mash and then mild colitis which all went away after 2 days and some low steroids for 6 weeks. Believe me, it's been the easiest thing in the world and lots of other people have gotten through it very well. If your son has small, low disease, ipi needs about 3 months to start working, so using this type of drug is good when things are "early". However, I think IL-2 you'd know after 6 weeks if it's working.
I'm also loving Anti-PD1 showing up to 33% response which seems to be higher in most of them.
I'm wishing your son the best wishes! It willl be ultimately his choice, and I'm hoping one of these treatments will slow things down for a long time or disappear those mets!!
Lisa
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- February 8, 2012 at 6:44 am
Hi!
Side effects…nothing to report other than my thyroid . I am on synthroid which works fine. As we age most of us lose thyroid function anyways. No potty runs, no vomiting, etc. I had a few odd and end aches and pains initially and a few spots of a rash on my hands. If you go to my website I give a little more detail. Its http://www.gentlewinds.org
March 26 will be my NED anniversary….2 years. My friend Linda is in the sister trial and her melanoma's continue to shrink away! She feels good too!!
If anything I get tired easier then "pre melanoma" but I can function fine and can work. We have been going to Disney World once to twice a week so I can build up my endurance.
I would recommend Anti-PD-1 ( and Dr Weber!) but one word of warning…I am on MDX 1106 aka BMS 936556. It works! They have other anti pd-1 trials out there and they haven't been showing as much promise…not saying they won't…..Hoping for the best!!!
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- February 8, 2012 at 6:44 am
Hi!
Side effects…nothing to report other than my thyroid . I am on synthroid which works fine. As we age most of us lose thyroid function anyways. No potty runs, no vomiting, etc. I had a few odd and end aches and pains initially and a few spots of a rash on my hands. If you go to my website I give a little more detail. Its http://www.gentlewinds.org
March 26 will be my NED anniversary….2 years. My friend Linda is in the sister trial and her melanoma's continue to shrink away! She feels good too!!
If anything I get tired easier then "pre melanoma" but I can function fine and can work. We have been going to Disney World once to twice a week so I can build up my endurance.
I would recommend Anti-PD-1 ( and Dr Weber!) but one word of warning…I am on MDX 1106 aka BMS 936556. It works! They have other anti pd-1 trials out there and they haven't been showing as much promise…not saying they won't…..Hoping for the best!!!
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- February 8, 2012 at 4:55 pm
IPI is great to try and I think the younger your son is, it's easier to get through any symptoms he may or may not even get. Even if he received symptoms,he'd be able to get on medication to help things out. Quite frankly, out of the symptoms and comparing them to what people go through with chemo, the symptoms seem to help you live life like you're not going through much. With the posting of IL-2 and 6% complete response, just doesn't seem high enough for me, but it's your choice and you just never know. IPI worked on me, grew back marginally and now I'm going back on it next week.
Best of luck!
Lisa
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- February 8, 2012 at 4:55 pm
IPI is great to try and I think the younger your son is, it's easier to get through any symptoms he may or may not even get. Even if he received symptoms,he'd be able to get on medication to help things out. Quite frankly, out of the symptoms and comparing them to what people go through with chemo, the symptoms seem to help you live life like you're not going through much. With the posting of IL-2 and 6% complete response, just doesn't seem high enough for me, but it's your choice and you just never know. IPI worked on me, grew back marginally and now I'm going back on it next week.
Best of luck!
Lisa
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- February 8, 2012 at 4:55 pm
IPI is great to try and I think the younger your son is, it's easier to get through any symptoms he may or may not even get. Even if he received symptoms,he'd be able to get on medication to help things out. Quite frankly, out of the symptoms and comparing them to what people go through with chemo, the symptoms seem to help you live life like you're not going through much. With the posting of IL-2 and 6% complete response, just doesn't seem high enough for me, but it's your choice and you just never know. IPI worked on me, grew back marginally and now I'm going back on it next week.
Best of luck!
Lisa
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- February 11, 2012 at 1:53 am
I was having some trouble logging in. What is the difference between MDX 1106 and MDX 1105 (I think that is the one you are referring to)? We want Jeff to have a plan of action if IL2 doesn't work. Maybe a Yevoy/Anti-PD1 trial (there's one at Yale he would qualify for). It's a Phase 1 – that's the scary part. I see you are in a Phase 1 – what is your dosage? Any issues with autoimmune reactions (besides the thyroid)? How do they administer it? We are just not sure what to do??? Thanks for your input – Jeff is 31, so I think he would tolerate the treatments.
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- February 11, 2012 at 1:53 am
I was having some trouble logging in. What is the difference between MDX 1106 and MDX 1105 (I think that is the one you are referring to)? We want Jeff to have a plan of action if IL2 doesn't work. Maybe a Yevoy/Anti-PD1 trial (there's one at Yale he would qualify for). It's a Phase 1 – that's the scary part. I see you are in a Phase 1 – what is your dosage? Any issues with autoimmune reactions (besides the thyroid)? How do they administer it? We are just not sure what to do??? Thanks for your input – Jeff is 31, so I think he would tolerate the treatments.
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- February 11, 2012 at 1:53 am
I was having some trouble logging in. What is the difference between MDX 1106 and MDX 1105 (I think that is the one you are referring to)? We want Jeff to have a plan of action if IL2 doesn't work. Maybe a Yevoy/Anti-PD1 trial (there's one at Yale he would qualify for). It's a Phase 1 – that's the scary part. I see you are in a Phase 1 – what is your dosage? Any issues with autoimmune reactions (besides the thyroid)? How do they administer it? We are just not sure what to do??? Thanks for your input – Jeff is 31, so I think he would tolerate the treatments.
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- February 8, 2012 at 6:44 am
Hi!
Side effects…nothing to report other than my thyroid . I am on synthroid which works fine. As we age most of us lose thyroid function anyways. No potty runs, no vomiting, etc. I had a few odd and end aches and pains initially and a few spots of a rash on my hands. If you go to my website I give a little more detail. Its http://www.gentlewinds.org
March 26 will be my NED anniversary….2 years. My friend Linda is in the sister trial and her melanoma's continue to shrink away! She feels good too!!
If anything I get tired easier then "pre melanoma" but I can function fine and can work. We have been going to Disney World once to twice a week so I can build up my endurance.
I would recommend Anti-PD-1 ( and Dr Weber!) but one word of warning…I am on MDX 1106 aka BMS 936556. It works! They have other anti pd-1 trials out there and they haven't been showing as much promise…not saying they won't…..Hoping for the best!!!
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