• I am scheduled for a second round of Ipi (yervoy) to treat my stage IV melanoma. Anyone else had more than 1 round of Ipi?

    Asked by tmlovett on Wednesday, December 12, 2012

    I am scheduled for a second round of Ipi (yervoy) to treat my stage IV melanoma. Anyone else had more than 1 round of Ipi?

    My doctors seem scared to touch me..... they just don't know what to do with me. I have no genetic mutations, so I don't qualify for any of those treatments. I had my R ovary removed thanks to the Melanoma which happens to 1 in a million women. So, again no one knows what to do with me. I still have ~8 or more tumors that I can palpate and I'm nervous I'm wasting time with another round of Ipi. Any thoughts out there? greatly appreciated

    4 Answers from the Community

    4 answers
    • Peroll's Avatar

      I am in the same boat withDrsthat do not know what to do. I am well past where there is any thing written on hw to treat me. I have been on the 5% side of the probability 5 time in a row. If your Dr does not know what to do anddoes not seem to want to touch you it is probably time for a secod opinion. I would suggest that you look for a teaching or reasearch hospitl or clinic as they tend to have more experence handling the off normal cases like ours. Good luck and let us know what happens.

      almost 4 years ago
    • Susan_Steel's Avatar

      Melanoma is an orphan disease that I've fought over 7 yrs at Stage IV by traveling to 7 clinical trials, 7 brain surgeries, and completing 5 conventional trials in Chicago.

      There should be more than Ipi for you. Local oncs unfortunately dont have the level of experience needed to fight this orphan disease. If you can afford it, get to one of the 40 true melanoma specialists in the US:

      Hodi at Dana Farber
      Chapman at Sloan
      Rosenberg at NCI
      Weber at Moffitt
      Sossman at Vanderbilt
      Wu at MDA
      Kirkwood at UPMC
      Gajewski at UofC
      Hamid at The Angeles Clinic
      Ribas at UCLA

      Look for more at clinicaltrials.gov but this list is personally vetted.

      Remember even with a failure, immunotherapies like Ipi can take awhile to kick in, so the true results of Ipi may not be clear for you yet. Good luck.

      almost 4 years ago
    • tmlovett's Avatar

      I guess I should have mentioned that I am at the top hospital in my region (Univ. of Colorado) and my doc is one of the leading researchers in melanoma at the university. I unfortunately don't quailify for any current clinical trials, so that's not an option now. My doc even mentioned that if there was somewhere to send me, he would! I quess I'll just wait and see..... thanks for your responses :)

      almost 4 years ago
    • Susan_Steel's Avatar

      While you are waiting, I would keep researching. I would recommend the following.

      1) Take a look at the sites of the docs I listed. Review their clinical trials and start differentiating between immunotherapies, targeted therapies, combos, & sequencing. Then see who is offering phase 2 or 3 trials in these categories based on your disease profile.

      2) Cross reference your list with AIM at Melanoma or Melanoma Research Alliance along with clinicaltrials.gov.

      3) Write a good patient summary, call the Clinical Nurse Mgrs at each target & engage their advice.

      4) Follow up with an email of her patient summary to these nurse mgrs and anticipated course of action. If you treat them like pros, they will remember you, you stay in front of line.

      5) Then prioritize your list & questions, call every Principal Investigator & send follow up email scheduling a phone call & outlining questions. Again act like a pro to get a pro.

      Finally, make sure to have a note taker on call with you so you can focus on rapport, info sharing & looking for shared benefit.

      I hope this helps.

      almost 4 years ago

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