Very Delayed Cycle 7 OSU Trial Update

I am back safe and sound from another uneventful trip to OSU. Just one more cycle of obinutuzumab (the IV-based treatment) to go. Then, I return for mid-trial testing (bone marrow biopsy (BMB), CT scans, etc.) and after that, I fly out just 5 more times every 4 weeks to pick up meds and have blood work. After that, I'll return for my third (and with any luck last) BMB and CT scans. After that, trips are reduced to quarterly.

I did have one scare over the past month. My neutrophils dipped to .3. Most of your know that this means my immune system went on a vacation and my bacteria-fighting white blood cell count was well under .5, the level that you need to be at to have treatment. Fortunately, Dr. Byrd overruled the nurse practitioner and they gave me a week to recover, along with strict orders to avoid crowded places, raw vegetables and pretty much anything else that had any potential to get me sick. I did avoid getting sick, which is good because if I did, it would have meant 4 days in the hospital which would have been a 4 day prison sentence to me. Thankfully, week over week they bounced back to .9 and then 1.4, which is normal. Last week, I was up to 3.2, the highest it's been in many months. Everyone was pleased and surprised by this rapid recovery.

December 4 marked the anniversary of when my GP said she was pretty sure I had lymphoma, so I couldn't help but reflect. Without question, it has been a year full of ups and downs, which included 8 days in the hospital and 17 trips to Columbus. My work schedule was totally disrupted and had to lower my expectations for my business, not to mention I missed most of the (fun) conferences and industry functions. I had to drop out of the Broad Street run (a 10 mile run through Philadelphia) and my exercise routine was compromised because I was really falling apart by May.

While I wouldn't wish these setbacks and cancer, let alone a particularly intractable version, on anyone, the odd truth is despite how hard and heartbreaking this year was at times, it has been an amazing year. I still managed to grow the business over 80% year over year, and keep my staff engaged enough that they voted us 3rd best place to work in Philadelphia, Philadelphia Business Journal, < 50 employee category. I managed to help son self-publish a card game. I even managed to improve my skating skills.

But most importantly, revealing others what I was going through enabled my personal relationships to evolve an entirely new level. I feel far more connected to my friends and family than I did a year ago, and believe it or not, I'm a as happy person. It turns out that the research supports this unpredicted consequence of my illness, and if you are interested is seeing the TED talk on this subject, click here:

ted.com/talks/robert_waldin...

Finally, I am truly grateful for the support from those of you on this forum who answered questions and cheered me on. I hope my posts in some small way pay it forward. Looking forward to kicking cancer's ass together in 2017!

15 Replies

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  • I wish you all the best on this trial and hopefully by the end of it you'll be able to continue with your normal life and forget about CLL.

    Thank you so much for the positive attitude. You have given courage to so many!

  • Thanks for sharing your reflections, insights, and positive thoughts with us. And we're glad to hear that those neutrophils are back in line!

  • Your posts have been so enlightening and uplifting. No doubt in my mind - you will continue to thrive and soar!

    Thank you for sharing. All good wishes to you for the holidays.

    Diana

  • Wow, this is all such good news! Thanks for updating. You are an inspiration because of your tenacity! What you have been going through with all of these plane trips to Ohio has to have been overwhelming. Especially when you feel bad. But you are a trooper and it makes me feel encouraged that I can keep pushing through also.

    Have a great Chr

  • Life is in the living. Living is in the relationships. So good to read of your stamina through the ordeals of treatment for which you have to travel and be displaced so long and often.

    Thank you for sharing your journey, and may your friendships, family and work relationships be ever strong.

  • Thanks for sharing, thompsonellen. You've certainly had some major ups and downs this last year. But it's great to hear that in spite of all the struggles (or maybe because of them), your relationships have deepened through it all. Such a precious thing..

    Wishing you all the best for 2017,

    Paula

  • thompsonellen, I really enjoy reading your updates. I appreciate the insightful information you provide to us regarding your trial and I love your upbeat attitude! Best of luck to you in 2017! Here's to kicking cancer's ass!

  • What a journey! So glad your neutrophils rebounded and you didn't get sick. Sounds like you are getting to the easier part I hope. Loved the Ted talk... I wholeheartedly agree. What a fascinating study. Glad your biz (what kind of biz is it?) is thriving despite your disruptions.

    I am having my bmb and ct scan next Wed. for my 6 months on acalabrutinib. My wbc and alc went up and then down to normal at 4 months. Fingers crossed that I am in at least a partial remission.

    Hope you have happy holidays with your loved ones.

    Best, Sandi

  • I hope you are in partial remission or better, too! I the counts going up in the short run is part of the expectation with the "brutinib" drugs. I was MRD+ after 3 months. I get BMB/CT 1/31/2017. I have a digital marketing company (websites, helping people build traffic to them).

    Do they keep you on the med after the study? How long is the study?

  • I think the study is 1 year but will continue as long as I am benefitting and not relapsing. If all good next week (I have been on monthly since 2nd cycle), I will move to quarterly. They supply the drugs free of charge for as long as it is working. I don't get to go off them unless I relapse. I am hoping that I can stay in partial or complete remission for a while until they can figure out how I come off and if I switch to something else for either relapse or maintenance.

    You are going through hell, but hopefully will be off everything after 14 months. Remember, I was admitted to the triple and had to decide. Feel free to private message me.

    Rooting for you and the rest of the trial. How are they doing? Are you glad you are on it? I adore Dr. Byrd but the commuting was going to be a killer. You are in Baltimore, yes

  • I'm in Philly. And OK to post here because I think the commentary is useful for the community. The commute is insanely time consuming, not to mention expensive. I feel good about being in the trial because I feel like I'm in good hands. Because of the 17p issue, they aren't sure they will take me off ibrutinib at the end even though the whole idea of this was to be treatment free for awhile. JB will decide in June and of course, I will do what he says. The people I am in touch with are responding well to the treatment, but some are having more side effects than others. I've been lucky to be pretty much fully functional and the only side effects I have are annoying but not big setbacks - itchy skin rash, cramping sometimes.

  • You all are great pioneers! Thank you! This is an intense trial and you have made great sacrifices for us all. I am watching you and the others with great interest and compassion.

    Are most of your and the others' side effects from the ibrutinib?

    Happy holidays!

  • Hard to tell if it's ibrutinib since I can't exactly A/B test it. I hope not since they may keep my on it. Would be nice to wear shorts again.

  • You are in great hands as you know. I live in Michigan now but have family in Columbus so chose Dr. Byrd. He is a great scientist, researcher and a caring doctor. I wish you the best! Keep posting!

  • The late and wonderful Gilda Radner said: " If it wasn't for the downside, everyone would want cancer." Take a look at our welcome video on our website: CLLSociety.org

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