New kid

Jb711
Jb711 Member Posts: 6
in Anal Cancer #1

Hi all,

Just started reading here and wanted to share. I have stage 4 diagnosis January 2014.  First dx was July 2010. The last couple of weeks I've spent looking up info about clinical trials and financial assistance.  I've been through four different chemo drugs and now showing slight increases in lung and lymph node involvement. The December CT showed significant improvement so an increase in growth really threw me Even though expected sooner or later.  My dr was excited about the new drug that was approved by the FDA in February and applied for coverage through insurance, which was denied.  Then there was the peer to peer appeal and that too was denied.  This put me in a pretty bad slump and started to look on Internet.  Lo  and behold the final appeal was approved!!!  I'll be starting on Opdivo next week, the same drug being used for the MDA trial coming up.  Wanted to let you know that at least one insurance company approved this off label, experimental drug To treat anal cancer and not just melanoma and lung cancer.

 

Not really a new kid, just on this board. I have 4 grandkids that I look forward to continue to spoil.  I've read most of the notes and wish I would have looked for a support board months ago. Hoping this info will help others.

 

J

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    JB711

    Hello and welcome.  I'm sorry for your circumstances, but I am so happy to hear that you have been approved for this new drug and I hope it will be effective for you.  I hope you'll continue to post here as you begin treatment and let us know how things are going.  I find promise in just knowing that clinical trials and experimental drugs are becoming more available in the treatment of anal cancer, which until as of late, continued to be treated just as it was many, many years ago.  I wish you all the very best as you journey forward and look forward to hearing from you again. 

    Martha

  • Cazz
    Cazz Member Posts: 106
    #3
    Congratulations

    Thanks for letting us know that your doctor is able to treat you with Nivolumab/Opdivo even before the trials at MDA begin.  I have applied to be in the MDA trial but I just emailed my oncologist to ask if he can get Opdivo as a treatment for me.  I would much rather travel the 30 miles to his clinic than the 1600 to Houston (from the SF Bay Area) and it would be a heck of a lot cheaper.  I didn't even know it was an option, so thanks for sharing your good news and please keep us informed of your progress - Nivolumab has had some spectacular results, including complete remission, I hope it works that well for you (and me, of course!)

    Carol

  • Jb711
    Jb711 Member Posts: 6
    #4
    mp327 said:

    JB711

    Hello and welcome.  I'm sorry for your circumstances, but I am so happy to hear that you have been approved for this new drug and I hope it will be effective for you.  I hope you'll continue to post here as you begin treatment and let us know how things are going.  I find promise in just knowing that clinical trials and experimental drugs are becoming more available in the treatment of anal cancer, which until as of late, continued to be treated just as it was many, many years ago.  I wish you all the very best as you journey forward and look forward to hearing from you again. 

    Martha

    New kid

    thanks Martha.  I think I will be the first to be using this drug for anal cancer at my hospital. I think my Dr is almost excited as I am about the approval. will post on how things go.

     

    J

  • Jb711
    Jb711 Member Posts: 6
    #5
    Cazz said:

    Congratulations

    Thanks for letting us know that your doctor is able to treat you with Nivolumab/Opdivo even before the trials at MDA begin.  I have applied to be in the MDA trial but I just emailed my oncologist to ask if he can get Opdivo as a treatment for me.  I would much rather travel the 30 miles to his clinic than the 1600 to Houston (from the SF Bay Area) and it would be a heck of a lot cheaper.  I didn't even know it was an option, so thanks for sharing your good news and please keep us informed of your progress - Nivolumab has had some spectacular results, including complete remission, I hope it works that well for you (and me, of course!)

    Carol

    New kid

    Hi Carol,

    i'm from the St. Louis area so it would be pricey for me too.  I think I would have qualified for the MDA trial but it is so much more convenient and affordable to have it here of course. There is a patient assistant program that Bristol Meyers has but I didn't get into many of the details once I got the approval from my insurance company. You might want to check into that too.  I think the Dr. Leaned heavily on the fact it was small cell squamous cancer even though the original cancer was anal and not lung.  I'll have to find out what else he used to persuade the insurance company.  Have my first treatment Friday. 

    Thanks,

    j

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #6
    Jb711 said:

    New kid

    Hi Carol,

    i'm from the St. Louis area so it would be pricey for me too.  I think I would have qualified for the MDA trial but it is so much more convenient and affordable to have it here of course. There is a patient assistant program that Bristol Meyers has but I didn't get into many of the details once I got the approval from my insurance company. You might want to check into that too.  I think the Dr. Leaned heavily on the fact it was small cell squamous cancer even though the original cancer was anal and not lung.  I'll have to find out what else he used to persuade the insurance company.  Have my first treatment Friday. 

    Thanks,

    j

    Hello, Jb711.

    I'm so sorry that you had to go through all this anal cancer stuff and still have to deal with getting insurance approval. My best to you in this struggle. I hope your therapy is off to a good start. What is the schedule like?

    I read recently in the New York Times that cancer centers are using already approved and well used chemotherapies on other types of cancers based on the cancer mutations, not the site of the disease, sometimes with stunningly good results. http://www.nytimes.com/2015/02/26/health/fast-track-attacks-on-cancer-accelerate-hopes.html?_r=0

    Fingers, toes and eyes are all tightly crossed for you!

  • Jb711
    Jb711 Member Posts: 6
    #7
    Ouch_Ouch_Ouch said:

    Hello, Jb711.

    I'm so sorry that you had to go through all this anal cancer stuff and still have to deal with getting insurance approval. My best to you in this struggle. I hope your therapy is off to a good start. What is the schedule like?

    I read recently in the New York Times that cancer centers are using already approved and well used chemotherapies on other types of cancers based on the cancer mutations, not the site of the disease, sometimes with stunningly good results. http://www.nytimes.com/2015/02/26/health/fast-track-attacks-on-cancer-accelerate-hopes.html?_r=0

    Fingers, toes and eyes are all tightly crossed for you!

    New start

    Thanks ouch.

    Started the Opdivo 10 days ago.  Will be going every other week.  This is the same drug they will be using at Anderson hospital trial this summer.  Entirely a different type of treatment.  Kills a protein protecting the cancer so the body's immune system can attack the cancer.  Lot of promising results.  After the first dose I didn't have side effects which is a change.  The neuropathy in hands and feet getting better.  My mouth soreness is decreasing after 18 months. That alone has made me feel better. It might take a few weeks to see the effect on the cancer.

    Hanging in there one day at a time.

     

    j

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