Nivolumab(Opdivo) for ovarian cancer

pam10
pam10 Member Posts: 11
in Ovarian Cancer #1

Has anyone gotten into a trial or used this drug off label for ovarian cancer? My mom has stage iv ovarian cancer and we are thinking to try this immunotheraphy drug for her. It is FDA approved for a few other cancers and I know it's in trials for ovarian and other cancers. Just seeing if anyone has tried it or known anyone who has. Thanks! 

Pam

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #2
    Pam~If your Mom can get N2 a trial she should go for it!

     Hello again Pam:

     Interesting that you should mention this drug.  Nivolumab is presently being tested in a clinical trial here at Virginia Oncology.  That is where I go for my treatments.  My oncologist and I discussed Immunotherapy drugs at my last consult this past week.  He drew me some charts, wrote down some names of some immunotherapy drugs, and talked about “T-Cells.”  He wrote down the name of NIVOLUMAB, Pembrolizumab and Atezolizumab among others.  He drew me a chart and talked about “Checkpoint Inhibitors” and other words that sailed right over my head.  But I intend to do some further study, so that I can understand it well enough to explain it to us “laymen.”  And when I do, I’ll share it with you.

     He said that they are having some good results.  So that’s all I know presently.   But as a Stage IV Ovarian cancer patient myself, if he offered it to me, I would give it prayerful consideration for sure.  Now that it is being tested for Ovarian Cancer, I’ll have to dig into how it works. 

     By comparison, one would think that the worst cancer for women is Breast cancer, but in fact, they have longer life spans now than ever before.  So it seems that the wheel that squeaks the loudest, gets the most grease.  And accordingly, we see “PINK” everywhere, when hardly a “TEAL ribbon” can be found. 

     Did you happen to see this NBC DateLine special?  It just aired recently.  It’s all about the Parker Institute for Cancer Immunotherapy.  In it he goes on to explain that part of the problem with cancer research is that the institutions that get research money for a certain cancer spend about a third of their money on that particular cancer.  Then they are reluctant to share their findings with other research facilities.  Yes actually money will be involved for whoever really finds a cure, or for some spectacular progression in the treatment of a certain cancer.

     This video segment seems to indicate that a lack of research money specifically designated for Immunotherapy is a big part of the problem as to why it is not been tested more widely.  And this goes along with what “No time for Cancer” posted about a REDBOOK article that indicated that it was simply a lack of funds for Ovarian Cancer, Uterine cancer, and even Cervical Cancer.

     Her post and my comments are here:  http://csn.cancer.org/node/302337

     Within that article are these statements:   “…Only 68 percent of cervical cancer patients and less than half of ovarian cancer patients survive five years past their diagnosis.

      Yet in 2014, the National Institutes of Health approved $682 million in grants for breast cancer research and only $131 million for ovarian cancer, while cervical and uterine cancers received even less…”

     In this NBC special, a doctor states that there certain cancers have been transformed (his words) by Immunotherapy drugs.  He said that it had worked extremely well for Bladder cancer, sub-types of Lymphoma, Kidney cancer and Non-small cell lung cancer, which is the leading cause of death in North America.

     So this fella, the first president of Facebook, Sean Parker, has now become a “billionaire” since FACEBOOK is used by billions of people the world over.   He has donated $250 million of his own money to put into a special fund just to conduct research on Immunotherapy.  Heretofore, companies have been reluctant to share the “lucrative” rights to their therapies. 

     It seems that less than 4% of money donated for cancer research goes for IMMUNOTHERAPY research.  So Sean Parker, the billionaire has now created the Parker Institute for Cancer Immunotherapy and managed to recruit 6 large research groups to band together to concentrate on immunotherapy alone.  Among those are the Sloan Kettering Institute.  These researchers have agreed to “share” their findings.  So this is a wonderful story. 

     Wouldn’t it be fantastic to have a major breakthrough for Ovarian cancer in our lifetime?  Her oncologist should be aware of where immunotherapy trials are being conducted.  If there is one for which she qualifies, and it is anywhere close to her, she should go for it.

     Loretta

     This is the link to view that NBC DATELINE SPECIAL.

     http://www.nbcnews.com/dateline/video/on-assignment-hacking-cancer-690231363507

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,506 Member
    #3
    Pam, one of the women on the

    Pam, one of the women on the Uterine board is taking it and has posted within the last few months.  I am sorry I can't remember who, but I believe it is one of the named "Topics" on the board.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited May 2016 #4
    Pam~Ocalagal99 (Ingrid) is taking Opdivo (See Uterine board)

    Pam – “Ocalagal99” comments on immunotherapy drug on this Uterine cancer site.  She has posted several times on the Uterine site, her first regarding “OPDIVO” on May 1, 2016.  So we will want to follow her to see the results. 

     Loretta

    Here's the Link - http://csn.cancer.org/node/301984

     Her name is “Ingrid” and here is her post of May 21st.  She has answered inquiries from several on that site.

     “Just had my Second Treatment!

     So I had my second treatment on Friday.  Slight new rash in my groin but taking care of it with Desitin and Cortizone. Was told that might happen and that Prednisone and some cream can handle it.  Other than some bone pain, which could be a residue from my Doxil treatment and nausea, I have not had any side effects so far.
    Labs are normal as usual.  I am doing well enough not to have to see my onc next week for labs, so he says.  Got a very nice letter from Bristol-Myers welcoming me to their patient list.  
    So next treatment will be in 2 weeks for a total of 6.  My onc tells me that it takes about 3.3 months for results to emerge.  Let's hope they are good ones!
    Thanks to all who are following my post and sending their own experiences.”
    <3 Ingrid

     

  • pam10
    pam10 Member Posts: 11
    #5
    Thank you

    Thank you so much for all the replies! I was able to get in touch with Ingrid! Hoping we can get opdivo approved for my mom!! 

  • pam10
    pam10 Member Posts: 11
    #6
    LorettaMarshall said:

    Pam~If your Mom can get N2 a trial she should go for it!

     Hello again Pam:

     Interesting that you should mention this drug.  Nivolumab is presently being tested in a clinical trial here at Virginia Oncology.  That is where I go for my treatments.  My oncologist and I discussed Immunotherapy drugs at my last consult this past week.  He drew me some charts, wrote down some names of some immunotherapy drugs, and talked about “T-Cells.”  He wrote down the name of NIVOLUMAB, Pembrolizumab and Atezolizumab among others.  He drew me a chart and talked about “Checkpoint Inhibitors” and other words that sailed right over my head.  But I intend to do some further study, so that I can understand it well enough to explain it to us “laymen.”  And when I do, I’ll share it with you.

     He said that they are having some good results.  So that’s all I know presently.   But as a Stage IV Ovarian cancer patient myself, if he offered it to me, I would give it prayerful consideration for sure.  Now that it is being tested for Ovarian Cancer, I’ll have to dig into how it works. 

     By comparison, one would think that the worst cancer for women is Breast cancer, but in fact, they have longer life spans now than ever before.  So it seems that the wheel that squeaks the loudest, gets the most grease.  And accordingly, we see “PINK” everywhere, when hardly a “TEAL ribbon” can be found. 

     Did you happen to see this NBC DateLine special?  It just aired recently.  It’s all about the Parker Institute for Cancer Immunotherapy.  In it he goes on to explain that part of the problem with cancer research is that the institutions that get research money for a certain cancer spend about a third of their money on that particular cancer.  Then they are reluctant to share their findings with other research facilities.  Yes actually money will be involved for whoever really finds a cure, or for some spectacular progression in the treatment of a certain cancer.

     This video segment seems to indicate that a lack of research money specifically designated for Immunotherapy is a big part of the problem as to why it is not been tested more widely.  And this goes along with what “No time for Cancer” posted about a REDBOOK article that indicated that it was simply a lack of funds for Ovarian Cancer, Uterine cancer, and even Cervical Cancer.

     Her post and my comments are here:  http://csn.cancer.org/node/302337

     Within that article are these statements:   “…Only 68 percent of cervical cancer patients and less than half of ovarian cancer patients survive five years past their diagnosis.

      Yet in 2014, the National Institutes of Health approved $682 million in grants for breast cancer research and only $131 million for ovarian cancer, while cervical and uterine cancers received even less…”

     In this NBC special, a doctor states that there certain cancers have been transformed (his words) by Immunotherapy drugs.  He said that it had worked extremely well for Bladder cancer, sub-types of Lymphoma, Kidney cancer and Non-small cell lung cancer, which is the leading cause of death in North America.

     So this fella, the first president of Facebook, Sean Parker, has now become a “billionaire” since FACEBOOK is used by billions of people the world over.   He has donated $250 million of his own money to put into a special fund just to conduct research on Immunotherapy.  Heretofore, companies have been reluctant to share the “lucrative” rights to their therapies. 

     It seems that less than 4% of money donated for cancer research goes for IMMUNOTHERAPY research.  So Sean Parker, the billionaire has now created the Parker Institute for Cancer Immunotherapy and managed to recruit 6 large research groups to band together to concentrate on immunotherapy alone.  Among those are the Sloan Kettering Institute.  These researchers have agreed to “share” their findings.  So this is a wonderful story. 

     Wouldn’t it be fantastic to have a major breakthrough for Ovarian cancer in our lifetime?  Her oncologist should be aware of where immunotherapy trials are being conducted.  If there is one for which she qualifies, and it is anywhere close to her, she should go for it.

     Loretta

     This is the link to view that NBC DATELINE SPECIAL.

     http://www.nbcnews.com/dateline/video/on-assignment-hacking-cancer-690231363507

     

    Dateline

    watching the special now! 

  • condolady
    condolady Member Posts: 1
    edited October 2016 #7
    pam10 said:

    Thank you

    Thank you so much for all the replies! I was able to get in touch with Ingrid! Hoping we can get opdivo approved for my mom!! 

    opdivo

    I had my first tx of Opidvo for stage IIIC  so far so good   getting drug as compassionate usage   any body else

     

  • lplattner
    lplattner Member Posts: 1
    edited December 2016 #8
    Opdivo as compassionate use

    I read with interest that you are getting Opdivo for "compassionate" use. I am Stage IV ovarian cancer and not eligible for clinical trial because I also have a pesky auto-immune disorder. I am also a dermatologist and have seen firsthand how it transformed the lives of metastatic melanoma patients. When it works it is like a miracle (of course, nothing works all of the time).

    Could you tell me a little information about the "compassionate" use method. I will bring this up to my doctor at my next visit. Your post has given me HOPE and a great idea. THANKS!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,506 Member
    #9
    lplattner said:

    Opdivo as compassionate use

    I read with interest that you are getting Opdivo for "compassionate" use. I am Stage IV ovarian cancer and not eligible for clinical trial because I also have a pesky auto-immune disorder. I am also a dermatologist and have seen firsthand how it transformed the lives of metastatic melanoma patients. When it works it is like a miracle (of course, nothing works all of the time).

    Could you tell me a little information about the "compassionate" use method. I will bring this up to my doctor at my next visit. Your post has given me HOPE and a great idea. THANKS!

    lplattner - I don't know how

    lplattner - I don't know how fast you will get an answer so I would just suggest calling the office Monday and asking about applying for compassionate use.  Any good doctor in oncology will know what this is, if they don't?  Just start calling all around.  Good luck and I hope you get accepted.  I am not sure how it would affect your auto-immune order, the drug does different things. 

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited December 2016 #10
    lplattner said:

    Opdivo as compassionate use

    I read with interest that you are getting Opdivo for "compassionate" use. I am Stage IV ovarian cancer and not eligible for clinical trial because I also have a pesky auto-immune disorder. I am also a dermatologist and have seen firsthand how it transformed the lives of metastatic melanoma patients. When it works it is like a miracle (of course, nothing works all of the time).

    Could you tell me a little information about the "compassionate" use method. I will bring this up to my doctor at my next visit. Your post has given me HOPE and a great idea. THANKS!

    hi, I am Lou Ann

    I am from the Uterine cancer board.  I am not on Opdivo, but am on Keytruda, which is also an  Immunotherapy drug.  My doctor chose Keytruda because it is administer very 3 weeks instead of 2 weeks for Opdivo.  I am getting it under compassionate use.  Compassionate use is a financial assistance program.  You have a few forms to fill out including a income disclosure form.  The doctor also has several forms that need to be filled out.  Merck was very quick with their response to my request.  Actually my doctor did most of the work and all we had to do was figure our annual income and sign a few things.    The forms are probably available on the internet  under under PAP Patient Assistance Program.  sending hugs and prayers, Lou Ann

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