It’s ANTI- PD1 guys…..(melanoma preventive drug)

Anti-pd1 is only in clinical trials. BMS is trying to fast track their version to phase 3 which has been in trials for a few years now. Merck's version began around the 1st of this year and is still years away from FDA approval.  With the successes reported at ASCO this year of the BMS drug, and the early reports of success with Merck's, I believe the industry will speed these trials along.  Watch for combo trials that are starting up.  After failed biochemo and failed pi3k, anti-pd1 is working for me with minimal side effects. 40% tumor reduction at 12 week scans! Had my 24 week pet/ct yesterday and waiting for results.  For those whose tumors express the pd ligand, this is a game changer. I was diagnosed stage 4 in March of 2011, braf negative, nras q61+. 

Anti-pd1 is only in clinical trials. BMS is trying to fast track their version to phase 3 which has been in trials for a few years now. Merck's version began around the 1st of this year and is still years away from FDA approval.  With the successes reported at ASCO this year of the BMS drug, and the early reports of success with Merck's, I believe the industry will speed these trials along.  Watch for combo trials that are starting up.  After failed biochemo and failed pi3k, anti-pd1 is working for me with minimal side effects. 40% tumor reduction at 12 week scans! Had my 24 week pet/ct yesterday and waiting for results.  For those whose tumors express the pd ligand, this is a game changer. I was diagnosed stage 4 in March of 2011, braf negative, nras q61+. 

Robert,

 

Thank you for the explanation. How wonderful for you to get a response so quickly. What are your side effects?

Please post the results of your scans from yesterday. You gives us all hope.

I will pray for clear scans for you.

God Bless you

Amy

Robert,

 

Thank you for the explanation. How wonderful for you to get a response so quickly. What are your side effects?

Please post the results of your scans from yesterday. You gives us all hope.

I will pray for clear scans for you.

God Bless you

Amy

Robert,

 

Thank you for the explanation. How wonderful for you to get a response so quickly. What are your side effects?

Please post the results of your scans from yesterday. You gives us all hope.

I will pray for clear scans for you.

God Bless you

Amy

Amy,  please complete a profile as I do not like to share with anonomous posts.  Are you the patient or a caregiver?  What stage, etc.  

Amy,  please complete a profile as I do not like to share with anonomous posts.  Are you the patient or a caregiver?  What stage, etc.  

Amy,  please complete a profile as I do not like to share with anonomous posts.  Are you the patient or a caregiver?  What stage, etc.  

Hello Robert,

 

I am so that I offended you that I do not have a profile done.

I am 80 years old and I do not know how to do the computer well. I could not figure out how to do the profile, etc. My granddaughter has melanoma.

It seems to me that I offered you my prayers but it appears that knowing my profile is more important to you.Since you have a rule about sharing with anonmous posts,  please do not share any information with me. That seems very important ot you.

I will be more careful  to  post next time (if there is a next time). I was just offering my  prayers to warriors of this terrible disease.

Do other members of the board feel  the same way as Robert???  Please post your response so I know not to post any longer.

Thanks so much for your time to read my post and reply. I apologize to everyone.

Amy

Robert,

I forgot to type "SORRY" in the first line, I get confused sometimes:

I am so SORRY  that I offended you that I do not have a profile done.

Amy

Robert,

I forgot to type "SORRY" in the first line, I get confused sometimes:

I am so SORRY  that I offended you that I do not have a profile done.

Amy

Robert,

I forgot to type "SORRY" in the first line, I get confused sometimes:

I am so SORRY  that I offended you that I do not have a profile done.

Amy

Please re read my post as you misunderstood it.  I am not offended by your post and I welcome anyones prayers for me and the rest on this forum.  What I said was I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well.

Robert

Dear Amy,
You’re not annonymous, you’re Amy! How wonderful that you’re here on behalf of your granddaughter.
Robert makes some valid points. We could be of more help if we knew more about your granddaughter’s diagnosis. Maybe someone could help you with your profile. ( my mom is just a bit older than you…I wish she were half as computer-literate as you!)
I have always found “annonymous” off-putting and find it much easier to correspond to a name.
I hope this is helpful…I guarantee that Robert was trying to be of help, and we all appreciate prayers.
Karen
PS. I know sometimes people use annonymous (as I once did) to report/discourage inappropriate postings, but i just don’t find the same intimacy if it’s used regularly. Just my own personal feelings, folks.

Just as a side note, sometimes in long discussions we get more than one "annonymous" posting & it gets confusing. Hang in there, Amy.

I agree, but think Amy should get some credit for giving her name at the end of her 'anonymous' post in an attempt to differentiate her post from others. (Such a pity that even after explaining her situation she is still not able to get a reply to her questions though!)

Dear Anonymous, What questions did she not get a reply to?  "Such a pity" is pretty strong language to a group of giving, sharing warriors.

 

You mentioned minimal side effects and Amy asked, "What are your side effects? "and "Please post the results of your scans from yesterday"  You then said 

"I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well."

 

It is your choice to share with whomever you chose, just as it is my choice to feel pity for an elderly grandma who searches the internet for information to help a feared for grandchild  A 'child'  who may be in dire need of help. (Perhaps even in too much pain to post on the internet, or off in another state with grandma surviving on snippets of information.. all of it worrisome.) Pity is a strong emotion. 

 

 

 

You mentioned minimal side effects and Amy asked, "What are your side effects? "and "Please post the results of your scans from yesterday"  You then said 

"I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well."

 

It is your choice to share with whomever you chose, just as it is my choice to feel pity for an elderly grandma who searches the internet for information to help a feared for grandchild  A 'child'  who may be in dire need of help. (Perhaps even in too much pain to post on the internet, or off in another state with grandma surviving on snippets of information.. all of it worrisome.) Pity is a strong emotion. 

 

 

 

You mentioned minimal side effects and Amy asked, "What are your side effects? "and "Please post the results of your scans from yesterday"  You then said 

"I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well."

 

It is your choice to share with whomever you chose, just as it is my choice to feel pity for an elderly grandma who searches the internet for information to help a feared for grandchild  A 'child'  who may be in dire need of help. (Perhaps even in too much pain to post on the internet, or off in another state with grandma surviving on snippets of information.. all of it worrisome.) Pity is a strong emotion. 

 

 

Dear Anonymous, What questions did she not get a reply to?  "Such a pity" is pretty strong language to a group of giving, sharing warriors.

Dear Anonymous, What questions did she not get a reply to?  "Such a pity" is pretty strong language to a group of giving, sharing warriors.

I agree, but think Amy should get some credit for giving her name at the end of her 'anonymous' post in an attempt to differentiate her post from others. (Such a pity that even after explaining her situation she is still not able to get a reply to her questions though!)

I agree, but think Amy should get some credit for giving her name at the end of her 'anonymous' post in an attempt to differentiate her post from others. (Such a pity that even after explaining her situation she is still not able to get a reply to her questions though!)

Just as a side note, sometimes in long discussions we get more than one "annonymous" posting & it gets confusing. Hang in there, Amy.

Just as a side note, sometimes in long discussions we get more than one "annonymous" posting & it gets confusing. Hang in there, Amy.

Dear Amy,
You’re not annonymous, you’re Amy! How wonderful that you’re here on behalf of your granddaughter.
Robert makes some valid points. We could be of more help if we knew more about your granddaughter’s diagnosis. Maybe someone could help you with your profile. ( my mom is just a bit older than you…I wish she were half as computer-literate as you!)
I have always found “annonymous” off-putting and find it much easier to correspond to a name.
I hope this is helpful…I guarantee that Robert was trying to be of help, and we all appreciate prayers.
Karen
PS. I know sometimes people use annonymous (as I once did) to report/discourage inappropriate postings, but i just don’t find the same intimacy if it’s used regularly. Just my own personal feelings, folks.

Dear Amy,
You’re not annonymous, you’re Amy! How wonderful that you’re here on behalf of your granddaughter.
Robert makes some valid points. We could be of more help if we knew more about your granddaughter’s diagnosis. Maybe someone could help you with your profile. ( my mom is just a bit older than you…I wish she were half as computer-literate as you!)
I have always found “annonymous” off-putting and find it much easier to correspond to a name.
I hope this is helpful…I guarantee that Robert was trying to be of help, and we all appreciate prayers.
Karen
PS. I know sometimes people use annonymous (as I once did) to report/discourage inappropriate postings, but i just don’t find the same intimacy if it’s used regularly. Just my own personal feelings, folks.

Please re read my post as you misunderstood it.  I am not offended by your post and I welcome anyones prayers for me and the rest on this forum.  What I said was I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well.

Robert

Please re read my post as you misunderstood it.  I am not offended by your post and I welcome anyones prayers for me and the rest on this forum.  What I said was I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well.

Robert

Hello Robert,

 

I am so that I offended you that I do not have a profile done.

I am 80 years old and I do not know how to do the computer well. I could not figure out how to do the profile, etc. My granddaughter has melanoma.

It seems to me that I offered you my prayers but it appears that knowing my profile is more important to you.Since you have a rule about sharing with anonmous posts,  please do not share any information with me. That seems very important ot you.

I will be more careful  to  post next time (if there is a next time). I was just offering my  prayers to warriors of this terrible disease.

Do other members of the board feel  the same way as Robert???  Please post your response so I know not to post any longer.

Thanks so much for your time to read my post and reply. I apologize to everyone.

Amy

Hello Robert,

 

I am so that I offended you that I do not have a profile done.

I am 80 years old and I do not know how to do the computer well. I could not figure out how to do the profile, etc. My granddaughter has melanoma.

It seems to me that I offered you my prayers but it appears that knowing my profile is more important to you.Since you have a rule about sharing with anonmous posts,  please do not share any information with me. That seems very important ot you.

I will be more careful  to  post next time (if there is a next time). I was just offering my  prayers to warriors of this terrible disease.

Do other members of the board feel  the same way as Robert???  Please post your response so I know not to post any longer.

Thanks so much for your time to read my post and reply. I apologize to everyone.

Amy

Hi Robert,
I was told at 1.5, more like 2 years. Do you think maybe sooner? I’ve exhausted all options and am (along w/my doc) currently hoping chemo keeps me stable until there’s a PD1 trial I can get into. Or if it’s FDA approved.
Karen

Nancy,

Please try and get a clarification on this from your Dr. and post what you find out as so many like NYKaren are down to limited or 0 options and are just waiting for news on PD-1.  For me, information like pd-1 coming gave me hope and got me through really bad times. I felt like a kid on Christmas the day I was accepted into the trial.  All any of us ask for is a glimmer of hope to keep us going until the next discovery that may lead to a cure for the beast.  Thanks for sharing !

Thanks,

Robert

Nancy,

Please try and get a clarification on this from your Dr. and post what you find out as so many like NYKaren are down to limited or 0 options and are just waiting for news on PD-1.  For me, information like pd-1 coming gave me hope and got me through really bad times. I felt like a kid on Christmas the day I was accepted into the trial.  All any of us ask for is a glimmer of hope to keep us going until the next discovery that may lead to a cure for the beast.  Thanks for sharing !

Thanks,

Robert

Nancy,

Please try and get a clarification on this from your Dr. and post what you find out as so many like NYKaren are down to limited or 0 options and are just waiting for news on PD-1.  For me, information like pd-1 coming gave me hope and got me through really bad times. I felt like a kid on Christmas the day I was accepted into the trial.  All any of us ask for is a glimmer of hope to keep us going until the next discovery that may lead to a cure for the beast.  Thanks for sharing !

Thanks,

Robert

I know from speaking with BMS on the phone a couple months ago that their Anti PD-1 will not be approved for at least another  year and half to 2 years… they should know! No one should hang their hopes on any drug that is still in phase one trials waiting to get it approved. I have been doing it since fall 2010 and I have been NED for 2 years 5 months. I have next treatment on Sept 5 and then I will only have 2 treatments left in the trial. I am in week 101 of the trial now.

I know from speaking with BMS on the phone a couple months ago that their Anti PD-1 will not be approved for at least another  year and half to 2 years… they should know! No one should hang their hopes on any drug that is still in phase one trials waiting to get it approved. I have been doing it since fall 2010 and I have been NED for 2 years 5 months. I have next treatment on Sept 5 and then I will only have 2 treatments left in the trial. I am in week 101 of the trial now.

I know from speaking with BMS on the phone a couple months ago that their Anti PD-1 will not be approved for at least another  year and half to 2 years… they should know! No one should hang their hopes on any drug that is still in phase one trials waiting to get it approved. I have been doing it since fall 2010 and I have been NED for 2 years 5 months. I have next treatment on Sept 5 and then I will only have 2 treatments left in the trial. I am in week 101 of the trial now.

Karen,

I have been told that there are combo trials starting up pretty soon that will include anti-pd-1 and other drugs.  I've also heard that anti-pd-1 may be approved fairly soon for other cancer types and be available off label for melanoma.  Not sure why, buyt maybe it's been in trials for other cancers longer?? Maybe that is what Dr. B at MD Anderson is talking about?  Have you or your Dr. tried reaching out to BMS or Merck and asking for a compassionate use?

Robert

Yep, Dr. Wolchok had tried. I’m seeing him on Thursday so I’ll pump him again then. Thanks, Robert.

I am in this BMS-936558  trial…Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IIIC or IV Melanoma That Has Been Removed By Surgery   also titled-

I am in this BMS-936558  trial…Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IIIC or IV Melanoma That Has Been Removed By Surgery   also titled-

I am in this BMS-936558  trial…Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IIIC or IV Melanoma That Has Been Removed By Surgery   also titled-

Karen,

This is a "different" antipd1 by ammipline (guessing on the spelling) that is offerered in Pineville NC.  I only know of one person on this trial and last I heard he is not doing well (at least he has lost like 60 pounds).  Pineville is about 30 min from Charlotte NC.  I don't know anything about this but if you want I can find a link for you.

linda

I think that this is the trial that you are talking about:

http://clinicaltrials.gov/ct2/show/NCT01352884?term=nct+01352884&rank=1

I think that this is the trial that you are talking about:

http://clinicaltrials.gov/ct2/show/NCT01352884?term=nct+01352884&rank=1

I think that this is the trial that you are talking about:

http://clinicaltrials.gov/ct2/show/NCT01352884?term=nct+01352884&rank=1

Karen,

This is a "different" antipd1 by ammipline (guessing on the spelling) that is offerered in Pineville NC.  I only know of one person on this trial and last I heard he is not doing well (at least he has lost like 60 pounds).  Pineville is about 30 min from Charlotte NC.  I don't know anything about this but if you want I can find a link for you.

linda

Karen,

This is a "different" antipd1 by ammipline (guessing on the spelling) that is offerered in Pineville NC.  I only know of one person on this trial and last I heard he is not doing well (at least he has lost like 60 pounds).  Pineville is about 30 min from Charlotte NC.  I don't know anything about this but if you want I can find a link for you.

linda

Yep, Dr. Wolchok had tried. I’m seeing him on Thursday so I’ll pump him again then. Thanks, Robert.

Yep, Dr. Wolchok had tried. I’m seeing him on Thursday so I’ll pump him again then. Thanks, Robert.

Karen,

I have been told that there are combo trials starting up pretty soon that will include anti-pd-1 and other drugs.  I've also heard that anti-pd-1 may be approved fairly soon for other cancer types and be available off label for melanoma.  Not sure why, buyt maybe it's been in trials for other cancers longer?? Maybe that is what Dr. B at MD Anderson is talking about?  Have you or your Dr. tried reaching out to BMS or Merck and asking for a compassionate use?

Robert

Karen,

I have been told that there are combo trials starting up pretty soon that will include anti-pd-1 and other drugs.  I've also heard that anti-pd-1 may be approved fairly soon for other cancer types and be available off label for melanoma.  Not sure why, buyt maybe it's been in trials for other cancers longer?? Maybe that is what Dr. B at MD Anderson is talking about?  Have you or your Dr. tried reaching out to BMS or Merck and asking for a compassionate use?

Robert

Hi Robert,
I was told at 1.5, more like 2 years. Do you think maybe sooner? I’ve exhausted all options and am (along w/my doc) currently hoping chemo keeps me stable until there’s a PD1 trial I can get into. Or if it’s FDA approved.
Karen

Hi Robert,
I was told at 1.5, more like 2 years. Do you think maybe sooner? I’ve exhausted all options and am (along w/my doc) currently hoping chemo keeps me stable until there’s a PD1 trial I can get into. Or if it’s FDA approved.
Karen

Anti-pd1 is only in clinical trials. BMS is trying to fast track their version to phase 3 which has been in trials for a few years now. Merck's version began around the 1st of this year and is still years away from FDA approval.  With the successes reported at ASCO this year of the BMS drug, and the early reports of success with Merck's, I believe the industry will speed these trials along.  Watch for combo trials that are starting up.  After failed biochemo and failed pi3k, anti-pd1 is working for me with minimal side effects. 40% tumor reduction at 12 week scans! Had my 24 week pet/ct yesterday and waiting for results.  For those whose tumors express the pd ligand, this is a game changer. I was diagnosed stage 4 in March of 2011, braf negative, nras q61+.