Erin Zammett Ruddy - Author. Writer. Blogger. Survivor.
  • Three months off treatment and so far so good (ish)

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    March 2nd, 2016
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    Have I mentioned I hate getting my blood drawn? Even after all these years I have to look away when the needle comes out.

    As many of you know, I’ve been off my life-saving cancer medication since November. You can read all about that decision—and why I’m not nuts—in the feature I wrote for Dr. Oz’s The Good Life magazine. Quick recap: I’m enrolled in Sloan Kettering’s discontinuation trial for chronic myelogenous leukemia patients who’ve achieved a deep and lasting remission on Gleevec or other Gleevec-like drugs. Researchers believe that certain patients, like me, may be able to maintain longterm remission without popping their daily pills, achieving what they call “treatment-free remission.” Will we be cured? Well…that’s tough to say. With CML there is likely always going to be some cancer cells lingering. But the thinking is that whatever low levels remain will be too weak to rise up. Or possibly (and I find this fascinating) that our immune systems have kicked in and will control any resistant leukemia, like a vaccine.

    Here’s how Michael Mauro, my beloved doctor of 14 years and the one heading up the trial at Sloan, explains it: “CML at diagnosis is like a fast car with a full tank of gas right at your doorstep and it just wants to go. CML in deep molecular remission is the hull of that car with no engine and no gas and it’s far away. You might be able to see it but with time you realize it’s not going to go anywhere.”

    The problem is when you see cancer, even if it’s not going to bother you, it still bothers you. Particularly when you’re not taking your medication anymore. I’ve been off for three months now and, as part of the trial protocol, have had three major blood tests. The first one came back negative. Wahoo! The last two came back ever-so-slightly positive. Dr. Mauro and I mostly communicate over text and email—and sometimes just in emojis ;-) . It’s a shorthand we’ve developed over years of him relaying near-constant test results that never required explanation. Because they were always negative. When my phone rang and his number popped up last month and again last week, I knew it meant there was explanation needed. My heart sank, of course. And, full disclosure, I cried when he said, “so, it wasn’t undetectable….” “Undetectable” is the gold standard for CML patients—it means, quite literally, that they couldn’t detect the cancer. Fuller disclosure: I also said a few internal F-words. But wait—before you feel bad for me or worry about me (please don’t!), the news isn’t bad! In the words of Biggie Smalls, I went from negative to positive and it’s still all good. Seriously.

    The positives we’re talking about are .001 in January and .0008 in February. I realize those numbers will only really mean something to my CML friends, but anyone can see they are super low. And way below the point where I would get kicked out of the trial and have to start Gleevec again. (That number is .1, which, P.S., is still way below any danger zone.) And, as you can see, the number went down from January to February. That said, it could go back up next month and still mean nothing. Here’s the thing that’s hard to grasp: It is entirely normal for CML patients in a deep, safe remission to fluctuate from positive to negative, sort of skipping along that undetectable line like a stone on the surface of the water. I haven’t told many people about my results because, as you can see, all of this is way too hard to say in a Facebook post—and if not explained correctly would set off alarm bells that don’t need to be rung.

    Dr. Mauro is not worried. He says I do not have to worry. Am I not worrying? I’m trying my best. His explanation helps: “The numbers are so low they wouldn’t even be detectable on most tests in the U.S. You are a victim of really good technology!” As part of the trial, we’re shipping my blood sample to Seattle where it’s being run on the most sensitive equipment out there—meaning it’s able to find those residual cells where other tests couldn’t. These numbers don’t mean my cancer is coming back, it means on those given days with those given samples, the test succeeded in finding some leukemia. Leukemia that has always been there. 

    Does it mean I’m in the clear for good? No. Could those residual cells still stage a come back? Sure. Anyone who’s dealt with cancer knows that anything is possible. But here’s the important thing: I’m not concerned about my cancer coming back because I fear we won’t be able to get it under control. That is really far outside the realm of possibility, I promise. As all of the other stoppage trials have proven, if my cancer gets above that .1 threshold and I have to go back on Gleevec, it will work again and I will be fine. I’m going to repeat that for my mom: I will be fine. I’m mostly anxious about those numbers creeping up because I don’t want to have to start taking my pills again. Because I LOVE being off treatment. I’ll elaborate on that in another post but it boils down to the fact that I feel better physically and mentally and emotionally. Who wouldn’t want to hang on to that? My next blood test is in three weeks and I am hopeful. Truly. Yes, seeing those numbers has been annoying but hopefully that’s all they are. That damn hollowed-out jalopy sitting on the horizon trying to freak me out. I’m not going to let it. You shouldn’t either.

 

10 responses to “Three months off treatment and so far so good (ish)” RSS icon

  • Good luck Erin! It certainly is a roller coaster ride! I’ve been off gleevec 3 years already and see Dr Mauro as well! I’m waiting for my latest test results. I had 2 slight positives and the rest all negative.

  • I am on the same trial and have been negative for 8 months. Good luck to you too.

  • Good news for you try not to worry my counts go from 0.000 to 0.007 I have the odd zeros and have done since being on glivec for 14 years, been off for 6 months now. X

  • Thank you for sharing your story. You give me hope that one day I too can be off the Gleevec. I was diagnosed in April 2015 and have not reached MMR yet (currently 0.042) so I have a long road ahead. It is still very encouraging to read about you and the others who commented about having success in the trial. Best of luck!

  • Erin:

    Best of luck! I’ve been off Gleevec since October 2, 2015 under Dr. Druker’s surveillance. I am hopeful all will be okay. I was undetectable until the January test which was “weak positive.”

    I’m just thinking positive thoughts. I, too, find it disheartening, to have go back on Gleevec, the medication that saved my life. My head is not foggy when I wake up in the morning, my cramps have gone and can sleep under my blankets again within three days…just two of the many reasons why I’d feel badly if I had to go back on Gleevec. I’m enjoying life right now in a brand new way!

    Hugs,
    Susan

  • This is such great news! I saw your article on yahoo when you were going off gleevac and was so excited for you! Glad to see you checking in and that things are going so well!

  • Lisa DiFiore-Ridolph

    Thank you for sharing your experience with this trial with us. I am always interested in learning more about AML, CML and other cancers ever since my son had high risk AML three years ago. I am now a strong advocate for people with cancer and their families and I try to learn as much as possible to help others navigate a life In the cancer world. Thank you for participating in a trial that will undoubtedly help others in the future. Please continue to share your experiences regarding this study and your progress. I wish you the best of health In the future.
    Lisa:)

  • Good on you Erin! I am looking forward to one day being able to do the same :)

    It’s so helpful for the rest of us when we hear about what leading doctors in the field are doing, it really seems like there are still huge discrepancies in understanding and opinion from doctor to doctor (which is normal I guess, in a constantly evolving field, but can be frustrating!!).

    Cheers to you enjoying your time off medication, for however (hopefully) long that will be!

  • Dear Erin,
    I am a big fan of yours, who’s been reading your various blogs for years (started when you were still at Glamour!), and am actually a researcher who studies cancer evolution. I hope your trial will be successful and you can be off the drug permanently!

    There’s been a lot of press about the super high cost of cancer drugs, in particular Gleevec, which entered the market costing $30,000 per year (which given the incidence of the disease in USA would have recouped the cost of drug development in about 2 years), and now costs $100,000 per year (and brings in annual revenues of 4.7 billion).

    I assume you got Gleevec costs covered as part of a clinical trial, but how easy is it to cover the costs of drug treatment for other patients? What are the costs not covered by insurance? can you do a story or blog post addressing some of these important issues?

  • Erin:

    Update. My February PCR came back as undetectable. January’s PCR showed a weak positive. Dr. Druker believes this means that the cells I have which are the good cells now may be trying to fight the bad cells now and that’s a good thing..,I’ll keep you posted…I just have very bad arthritic-like symptoms over my whole body…Dr. Druker hopes that this will all go away by June-I sure hope so!

    Hugs,
    Susan


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