OSU Cycle 3, Week 4 Update

OSU Cycle 3, Week 4 Update

Week 4 was “Groundhog’s Day,” (a reference to a Bill Murray movie for those of you who don’t know what this means).

I was back at OSU Monday night to make my one and only 8:00 am Tuesday appointment. This week, we escalated from 100 to 200 mg of venetoclax, and once again, it was rather uneventful. Like last week, they took the standard vitals, drew blood and put an IV in. About two hours later, the cleared me to take the bigger dose and I sat there for 8 hours. One of the people I met last week and who travels from Texas visited me. At the end of the day, blood was taken, the results came back and they declared me fine and let me go back to the hotel.

Again, I walked the 1.5 miles from my hotel to Grandview Avenue, which is Columbus’ version of heaven for foodies, this time without a reservation, but with plans to go to Mazah, a Mediterranean restaurant. The food was tasty (and photogenic) and very reasonable – chicken kabob, hummus, cabbage salad, rice and pita for $12. I did another trip to Jeni’s ice cream, though this time it tasted too sweet, so next time I think I’ll hang out at the coffee house next store instead (Columbus has a major coffee culture).

Today, I arrived at 7:30 am, they drew blood, it came back nearly perfect and I was free to leave. I visited another trial patient who is from Minneapolis (thanks to DanaM for the introduction), and we hung out in his room until I needed to leave and catch my plane.

The big milestone this week is my lymphocyte count was in the normal range, and my white blood cell count (WBC) was 6 and change, down from 11 last week. Hemoglobin and RBC are still low, but continue to move in the right direction. Lymph nodes are gone in all but one area, and they are almost gone, too.

The drugs are amazing at killing cancer cells, but they also damage good cells, and while I still have enough neutrophils (infection fighting white blood cells), I’m still at a greater risk for infection, at some point, they will dip low enough that I really need to be careful. I was told to avoid sick people, so while it’s not time to live in a bubble, it is time to step up and be more cautious. For example, 2016-17 season flu shots are out and I plan to get mine as soon as OSU has its hands on them.

On another note, I have worked throughout this, and we got some exciting news late last week. We found out my company ranked 3rd in the small business category of Philadelphia Business Journal’s Best Places to work list. There were hundreds of applicants and 35 finalists in our category. I’m very proud of this accomplishment which is based totally on an employee satisfaction survey, and especially that the survey took place in the middle of my physical dive right before I began treatment.

Next Monday, I’m back for the last escalation. We will raise venetoclax to 400 from 200 mg. Two week over week visits left before I revert to a monthly schedule!

That’s it for now. Thanks for your support and let me know if you have any questions.

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11 Replies

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  • Ellen, It has to be so satisfying to be fighting the good fight at OSU & topping the charts in your business. You are making a difference 24/7! Awesome!

    Diana

  • Thanks. Keeping busy and normal is part of my coping strategy. Otherwise, I'd be falling apart!

  • Wonderful report about treatment and life outside of treatment.

  • You are a true inspiration. Congratulations on all fronts

  • Ellen

    Just a thought! Make sure you are aware of the nuetropenic diet advice for when,or if your Nuets drop !

    It's extremely important not only to be aware of sick people but to avoid foodstuff that can be harbingers of bacteria such as runny eggs,soft cheeses etc as well as peeling all fruit before consumption.

    Not sure about hummus though lol.

    Just a thought for you but I am sure your trial medics would have informed you!

    Geoff

  • Good point - I really should watch now. The numbers can change so much even in a week.

  • No salad bars! I was told that even if your neuts haven't tanked. Your such a champion and inspiration! Change the "C" to "M" :) Finally next week!

  • Fixed. Sorry about that!!! Wrote it on the plane in a hurry. And thanks for the advice. Salad bars out.

  • LOL Oh yeah Fan has a fit over salad bars and buffets. Says we shouldn't eat at them even with good health hehehehe

  • Awesome news on all fronts Ellen!! Absolutely thrilled for you. Keep up the amazing progress both physically and professionally.

    All the best,

    Nan

  • You're doing amazingly well. Keep up the good fight. Those of us waiting for another treatment are happy to read your great results. Congratulations on working for a company that appreciates their employees. My ex-boss had a germ phobia and freaked out when he heard my diagnosis. He wiped down everything with antibacterial wipes and would not come near me, which was a blessing.☺️

    May your strength and courage continue,

    Sally

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