Avastin?

Karenhopeful
Karenhopeful Member Posts: 38
in Uterine/Endometrial Cancer #1
I have uterine cancer. 2007 total hysterectomy and 28 radiations. Jan 2012 mets to lungs and abdomen, started once a month chemo with carboplatin and taxol, May mets to rib bone and spreading, affecting nerve bundle in back shoulder, 19 radiations, July 2 mets in brain, gamma knife and good results, newest CT shows new mets in omentum and untreated lung has grown slightly, and 3 unidentified lesions on top of my liver. No more chemo. Dr. said maybe Avastin but most insurances don't pay for it - anyone with experience on the insurance? Has anyone received Avastin? Is it or did it help at all? Has anyone with advanced uterine Mets received some other treatment I can draw their attention to?

Comments

  • beila
    beila Member Posts: 97 Member
    #2
    avastin
    Karenhopeful

    I have no direct experience, but I have seen Avastin mentioned repeatedly on this site.

    The most inspiring thing I have seen here was from a woman callled "Artist 49"
    She is enjoying a year and a half REMISSION from her stage 4 USPC
    She was on a clinical trial at Sloan Kettering since Nov 2010
    It consisted of 4 months of AVASTIN, carboplatin and Ixempra, followed by ongoing maintennance of AVASTIN every 3 weeks.
    She feels well

    I dont know how this is done, as I am computer-challenged, but she has invited people to contact her with any questions

    I know that her situation certainly gave me much needed encouragement

    Let us know, and all the best to you,
    Beila
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #3
    beila said:

    avastin
    Karenhopeful

    I have no direct experience, but I have seen Avastin mentioned repeatedly on this site.

    The most inspiring thing I have seen here was from a woman callled "Artist 49"
    She is enjoying a year and a half REMISSION from her stage 4 USPC
    She was on a clinical trial at Sloan Kettering since Nov 2010
    It consisted of 4 months of AVASTIN, carboplatin and Ixempra, followed by ongoing maintennance of AVASTIN every 3 weeks.
    She feels well

    I dont know how this is done, as I am computer-challenged, but she has invited people to contact her with any questions

    I know that her situation certainly gave me much needed encouragement

    Let us know, and all the best to you,
    Beila

    Karenhopeful
    So sorry about the progression you are dealing with.

    I do know of woman wit UPSC that has been on Avastin for over a year and doing well.

    The insurance issue is maddening. I think it is important for your doctor to advocate strongly for you. If there is an argument that this is life threatening, it will strengthen your position. Sometimes there are advocates within insurance companies that may be able to help or steer you in right direction.

    Recently I was dealing with insurance denial and I contacted the drug manufacturer directly. They were very nice and responded immediately and would advocate directly on my behalf with the insurer (in my case Medicare). Medicare also told me about applying for Medicaid which has a spend-down component - meaning they would pay some and I would pay some.

    There are many avenues to take. Good luck with the Fight!! Best wishes.

    Mary Ann
  • artist49
    artist49 Member Posts: 87
    #4
    beila said:

    avastin
    Karenhopeful

    I have no direct experience, but I have seen Avastin mentioned repeatedly on this site.

    The most inspiring thing I have seen here was from a woman callled "Artist 49"
    She is enjoying a year and a half REMISSION from her stage 4 USPC
    She was on a clinical trial at Sloan Kettering since Nov 2010
    It consisted of 4 months of AVASTIN, carboplatin and Ixempra, followed by ongoing maintennance of AVASTIN every 3 weeks.
    She feels well

    I dont know how this is done, as I am computer-challenged, but she has invited people to contact her with any questions

    I know that her situation certainly gave me much needed encouragement

    Let us know, and all the best to you,
    Beila

    BRCA 2 and chemo sensitivity
    Beila, you asked why I thought my response may be different because of my BRCA 2 mutation.
    People with BRCA mutations are known to have a better response to chemo drugs (maybe just
    the platinum drugs) and avastin and that is why I generally hesitate to tell my story online. I know that it doesn't pertain to everyone but it might give people some hope with
    the dismal prognosis of this disease. Also, if the drugs I received work for even one other person, it's worth publicizing it. One more thing - my onc mentioned the opening of
    a bunch of clinical trials for endometrial cancer (including UPSC) which include the PARP
    inhibitor drugs. Beila, mention that at your upcoming appointment. Are you near a major cancer center that offers clinical trials?
    I had a CT scan this morning and will get the results tomorrow morning. I will not sleep
    tonight.
  • Karenhopeful
    Karenhopeful Member Posts: 38
    #5
    artist49 said:

    BRCA 2 and chemo sensitivity
    Beila, you asked why I thought my response may be different because of my BRCA 2 mutation.
    People with BRCA mutations are known to have a better response to chemo drugs (maybe just
    the platinum drugs) and avastin and that is why I generally hesitate to tell my story online. I know that it doesn't pertain to everyone but it might give people some hope with
    the dismal prognosis of this disease. Also, if the drugs I received work for even one other person, it's worth publicizing it. One more thing - my onc mentioned the opening of
    a bunch of clinical trials for endometrial cancer (including UPSC) which include the PARP
    inhibitor drugs. Beila, mention that at your upcoming appointment. Are you near a major cancer center that offers clinical trials?
    I had a CT scan this morning and will get the results tomorrow morning. I will not sleep
    tonight.

    Thank you for your information. I don't think I have BRCA, I don't think I've been tested but my sister had the same uterine cancer and asked for the test and it came back negative, just bad luck for us I guess. My doctor is supposed to be checking with the University of Michigan about clinical trials as I am in Southeast Michigan. I don't know much about searching on line, but did not find anything useful in what I did search (old or closed, or not with my situtation) What are PARP inhibitor drugs?
    Please let us know about your scan results - sure hope they are great!!! Karen (hopeful)
  • Goldamillie
    Goldamillie Member Posts: 26
    #6
    daisy366 said:

    Karenhopeful
    So sorry about the progression you are dealing with.

    I do know of woman wit UPSC that has been on Avastin for over a year and doing well.

    The insurance issue is maddening. I think it is important for your doctor to advocate strongly for you. If there is an argument that this is life threatening, it will strengthen your position. Sometimes there are advocates within insurance companies that may be able to help or steer you in right direction.

    Recently I was dealing with insurance denial and I contacted the drug manufacturer directly. They were very nice and responded immediately and would advocate directly on my behalf with the insurer (in my case Medicare). Medicare also told me about applying for Medicaid which has a spend-down component - meaning they would pay some and I would pay some.

    There are many avenues to take. Good luck with the Fight!! Best wishes.

    Mary Ann

    Avastin
    Hello, Karenhopeful

    I just posted for the first time today and have a ONC/GYN appt tomorrow to discuss chemo options to "fence in" the UPSC that has spread to my liver now. I will ask about Avastin and the PPRP (?) thing in the other post, too.

    I agree re: insurance. I am 66 and have been healthy all my life and never used my BCBS until now and it seems they want very much to not consider "MY LIFE". I have BCBS from when I worked (retired 4/1/12) as supplemental to Medicare and BCBC they denied a PET/CT scan while I was still working and not on Medicare last fall - called it "experimental" and we paid for it ourselves resulting in a second surgery last Jan. another chemo and 24 more radiation hits. I WILL FIGHT for EARNED coverage - thank you! However, it sure takes energy I seldom have now. bummer. :o)

    I am in Baltimore MD at Mercy Hospital and the ONC/GYN department is wonderful. By the way, I started at Johns Hopkins because it was rated "best in the country" in 2010 and then transferred to Mercy fall of 2011. Reason: contrary to excellent publicity for JH - if you don't have a paper worthy cancer - good luck - AND more importantly although the doctors seem mildly interested the support chemo, radiation, and hematology staff treat you like a number. It was a demoralizing experience. After I was able to transfer, I asked everyone I met about my experience at JH and EVERYONE (nurses, patients, massage therapists, cleaning people, on and on) knew how cold JH treated non "paper worthy" patients. GREAT! Too bad nobody told me. Live and learn, eh?

    I apologize if this is a downer type post. I know UPSC is considered rare, kind of, and not in the limelight, I guess.

    Golda Millie
  • Goldamillie
    Goldamillie Member Posts: 26
    #7
    artist49 said:

    BRCA 2 and chemo sensitivity
    Beila, you asked why I thought my response may be different because of my BRCA 2 mutation.
    People with BRCA mutations are known to have a better response to chemo drugs (maybe just
    the platinum drugs) and avastin and that is why I generally hesitate to tell my story online. I know that it doesn't pertain to everyone but it might give people some hope with
    the dismal prognosis of this disease. Also, if the drugs I received work for even one other person, it's worth publicizing it. One more thing - my onc mentioned the opening of
    a bunch of clinical trials for endometrial cancer (including UPSC) which include the PARP
    inhibitor drugs. Beila, mention that at your upcoming appointment. Are you near a major cancer center that offers clinical trials?
    I had a CT scan this morning and will get the results tomorrow morning. I will not sleep
    tonight.

    Hope
    to artist 49:

    Hope all went well for you. Fingers and toes crossed.

    I am new to this posting stuff - sorry
  • Goldamillie
    Goldamillie Member Posts: 26
    #8
    Avastin and hope
    Hello, Karenhopeful

    I go tomorrow to talk to onc/gyn re: what chemo is now available to me as I have mets to liver from UPSC and have maxed out on Carboplatin/Taxol with two treatments and maxed out on radiation 2 treatments. I will post what he offers me - fingers crossed as the carbo/tax and rad accumulation since 2010 has surely beat me up. I am concerned any more chemo will take me to the floor.

    I wish I could sit beside you and hold your hand. Maybe that's too intimate/personal but I sure wish I could anyway.

    Best

    Golda Millie

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