• What to except

    Asked by SandiA on Saturday, October 4, 2014

    What to except

    Hi! I met with my medical oncologist Thursday and he confirmed my cancer had spread to my lungs. Stage IV. I have been given two options. Option 1 is a clinical trial and is a combo of two drugs Yervoy and anti pd 1. Option 2 is high dose interleukin 2. My doctor is preparing me for both. His preference is the trial but of course I have to qualify. Has anyone been on any of these drugs and can give me any advice or idea what to expect. I am pretty scared and would appreciate any help from my whatsnext family. Thanks!

    6 Answers from the Community

    6 answers
    • barryboomer's Avatar
      barryboomer

      I think you have a third option to TRY......and use in conjunction with the 2 you met and that's a Radical Shift of Diet to Plant Foods, Juicing and Anti Cancer Supplements. Those are some things YOU can control and I don't know WHY the Oncologists don't at least tell patients about it.....Some say just eat healthy and that's good but a radical shift IS AN OPTION that a lot of people aren't even aware that it exists.

      over 6 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hi Sandi, i don't know about the drugs personally, but i am pretty sure Keith59 gets that Yervoy. Seems like someone else on WhatNext does too but i can't remember who.

      Praying you qualify for the clinical trial. I am pretty sure i have read a lot of really good things about Yervoy.

      over 6 years ago
    • melanomamama's Avatar
      melanomamama

      I successfully had Yervoy, with few side effects, and it has kept me going with clean scans for the last two years. It involved four infusions three weeks apart. A couple of hours each infusion. I'm very happy with Yervoy.

      I flunked the criteria for a PD1 trial, so don't know about that one.

      I have had interleukin-2, and it was hideous. I wouldn't wish it on my worst enemy. You are hospitalized to get the stuff, and it makes you agitated and hallucinatory, and you puff up like the Pillsbury Dough Boy. I got the trots and vomited. I itched like crazy for weeks afterwards. I gained 20 pounds of water weight. I ended up in the intensive care unit from the treatment. I have heard of others who have also gone to the ICU. If you can avoid interleukin-2, do it. It is hugely time consuming because of the hospitalizations during each round. I only made it through two rounds of six days each before hitting the ICU, but they try to give you up to six rounds of the stuff. It's the worst thing I have ever gone through, (well, my two brain surgeries were no picnic either) and it didn't work as well as the Yervoy.

      I know one guy who got all six rounds of interleukin-2, and he's doing well. He didn't suffer as many side effects as I did, and he looks perky and cheerful now.

      But listen to me. A stage IV melanoma patient still here and living a good quality of life six years after my stage IV diagnosis. So grab yourself some Yervoy and/or interleukin-2 or whatever they offer, because you can benefit from any of these. I would ask the doc to explain the odds of survival. The doctor will scare you by saying how many months these treatments might add to your life, and you will be thinking, "Months? What about years?" I have gotten years of benefit, and I hope you will too. I think Yervoy and PD 1 promise more people longer benefit than interleukin-2, but you need to get that info straight from the oncologist.

      If you want to scare yourself, read my book in which I list in detail all the side effects of interleukin-2. Melanoma Mama on Life, Death, and Tent Camping at www.melanomamama.com. You can read the first two chapters for free on the website.

      Constance Emerson Crooker

      over 6 years ago
    • Dick_K's Avatar
      Dick_K

      I am now five year out from stage IV diagnosis and almost five years out from IL-2; it's brutal. Melanomamama describes interleukin-2 very well. The best I can add to her comments is for you to check on the rates of success, it's quite low. I have not had Yervoy or PD-1 so I can't offer any personal comments, sorry. Treatment decisions are tough, best of luck to you.

      over 6 years ago
    • jzwalker's Avatar
      jzwalker

      Even though I had a severe reaction to Yervoy, I would do it again. My last infusion was January 2012. The lesions in my lungs decreased by about a third. As of my last scan in April they were still stable.

      over 6 years ago
    • SandiA's Avatar
      SandiA

      Thank you all very much. I know I have some rough days ahead but it really helps to hear from those you have been there. It really gives me encouragement! I start the process for both this week just in case the trial falls through. I will keep you posted. I love my whatnext family!

      over 6 years ago

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