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Abraxane next

› Forums › General Melanoma Community › Abraxane next

  • Post
    • September 24, 2017 at 11:32 pm
    Jess58
    Participant
      Hi,

      Looking for help.

      My wife is Stage IV, in lymph nodes and bones. Found out April 2017. Total surprise.

      She has concurrent follicular lymphoma which has disqualified her from every trial up to now.

      Progressed after 4 rounds of ippi and divo.

      Had one dose of keytruda and doctor stopped due to new Mets.

      Now getting radiation for pain.

      After radiation Dr will start her on Abraxane.

      She has no mutations.

      Hopefully she’ll qualify for trial so no one will take her even though follicular lymphoma is indolent.

      Hope abraxane works post one round with keytruda.

      Was in contact with Dr Davies at MD Anderson whom successfully tested patient with Abraxane and keytruda after profession on ipi and divide, but our insurer won’t cover that combo. I got them to cover Abraxane but it was like pulling teeth.

      All advice is most welcome.

      So far we have not caught one break.

      God bless

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    • Replies
        • September 25, 2017 at 5:37 pm
        Cindyco
        Participant

          Hi Jess, 

          My mom has Stage IV mucosal melanoma with liver/lung/lymph node involvement, which is a little different from cutatneous, but her treatment history has been similar to your wife's.  My mom did one dose of ipi/nivo (which she had to stop for liver toxicity), radiation to shrink the primary, then one dose of keytruda (also stopped due to toxicity), 2 months of Abraxane, 6 doses of the IMGCP100 trial, and now she is doing biochemo.  We also feel like we are not catching a break.  

          That being said, the Abraxane was the easiest tolerated of all the treatments.  She had high quality of life during that time and was mostly asymptomatic.  Her hair thinned, but she didn't go bald.  We were extremely worried about switching from immunotherapy to chemo, but two major centers that the time felt that the Abraxane would be best since she was rapidly progressing at the time.  Looking back, it may have slowed her cancer, but ultimately wasn't enough and she progressed while on it which is why we had to stop.  However, every body is different, and it looks like you'd being doing Abraxane/Keytruda sequentially as well.  I hope that your wife will be one of the people that gets a good response from Abraxane.  Good luck!

          Connie

            • September 25, 2017 at 6:06 pm
            Jess58
            Participant
              Hi Connie,

              Thank you for the information. I will pass it on to my wife.

              I hope the Abraxane actually reverses some of the progression but will take any positive effect also. So if it just slows it so we buy time for something else to come along then so be it.

              This is such a hardcore illness to deal with and we pray daily to the Lord for help.

              It’s helpful to know that the Abraxane may be easier to deal with side effects wise.

              I wish you of the best of luck with your mother.

              Warm regards

              Jess

              • September 26, 2017 at 8:59 pm
              jrtufo
              Participant

                You don't say where your wife is being treated, but my experience at U of Colorado's cancer center has been great from the "insurance company" perspective.  They have done all the wrangling on my behalf.  This was not the case at the two other cancer centers (not university affliated) where I sought treatment.  If there is a NCI university affliated hospital within a reasonable distance from you, I urge you to consider this route.  Worry about the cancer if you must, but let someone else worry about the insurance approvals.

                • September 27, 2017 at 10:57 pm
                Jess58
                Participant
                  Hi,

                  Yes, my wife is treating at Sylvester Comprehensive Cancer Unit at the University of Miami. I checked out the closest NCI affiliate and it’s in Tampa -Moffit. I tried getting my wife in some trials there but the wouldn’t take her.

                  Thanks for the advice.

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