OSU Trial Cycle 3, Week 5

Hi everyone,

I'm happy to report I got through the venetoclax ramp up to 400 mg without incident. I am now officially on the full regimen of meds. With the exception of the 5 remaining IV treatments, all I need to do is swallow 10 pills a day and drink a lot of water to flush the toxins out.

The only thing I have to be concerned about at this point is my neutrophils (good white blood cells), which are tanking a bit. They went from 2.4 to 1.5 in one week. Apparently this is not uncommon, but if they go below .5, they won't treat me and I'll need to go on neutropenic diet to avoid bacteria (e.g. no raw veggies, fruits or nuts, only well done meat, no moldy cheeses, runny eggs, sushi).

There is nothing I can do to boost this. I have ramped up my hand washing and avoidance of potentially sick people just because my immune system is compromised at this point, and I really need to try to afford getting sick.

I have connected with about 6 other patients on the same trial, and we really drove the nurses nuts this week with our socializing and group walks around the ward (think four of us pushing our IV poles). Apparently, they aren't keen about our knowing each other, because they fear it might bias what we say about how we feel, but they know with social media, it's impossible to keep us from communicating. Frankly, our socializing won't affect what they see in lab results or physical exams, and everyone is doing fine so far, so there isn't too much bias to introduce.

Next week, I fly out for Cycle 4, week 1 (3 down, 11 to go!). After next week, I'm down to monthly visits. All I can say is thank God the heavy lifting happened during the summer. Though it sort of wrecked any opportunity for vacation or fun, I don't think I would have managed juggling the school year on top of it.

As always, thanks for your support, and let me know if you have any questions.


20 Replies

  • Thanks for posting, Ellen. I enjoy your informative posts and wish you all the best!


  • This is exciting. How long will you be on Venetoclax? Is there a plan to stop all medicine when you reach full remission? Is there an estimate (14 cycles)? To my knowledge this is the only treatment that has this promise unless you get lucky with FCR. I keep thinking that we will all end up on Venetoclax.

    Before I went on ACP-196 I had to go a diet of only cooked foods – nothing raw. Of course I couldn’t go to the gym or near groups. It got old fast but after two weeks on ACP – 196 that went out the door.

    Our timing is fortunate. Just five years ago we would be in real trouble.

  • There are 14 cycles, and the first 8 include obinutuzumab, cycles 2-14 include ibrutinib and cycles 3-14 include venetoclax. There is hope that this might be a "recipe" for a cure. Yes, I'm 17p deleted, and for sure 5 years ago things were quite different, though there is someone on the trial who is also 17p deleted who was W&W for 8 years.

  • More Power to you Ellen.... I make my way west to Columbus from Phila. one time a year, so far in a single day, (back and forth), and it takes energy to do that. Add treatment to the journey......I think you deserve a merit badge! I wish MRD- for you!

  • Thanks! I can't wait until I'm down to monthly!

  • You're amazing! Thanks for taking the time to keep us informed. I always enjoy reading your posts. No ice cream this week?☺️ Sally

  • Go get em Ellen!

  • Hi Ellen

    Keep up the good work .

    I'm pleased to hear you are disrupting things with your socializing .Shame you Havnt got your favourite tipple with you then you could really get things going .


  • Your detailed reports are fabulous. Thank you.

    The staff must love your kick butt attitude. It's contagious. I understand the need to keep patients apart but I think the therapy of camaraderie is more valuable than the numbers for reports. I think we have had the pleasure of meeting the leader of the pack :)

    Thank you from all of us who are walking the walk. Without forums like this and warriors like you - it's a very lonely path.

  • Everyone I have met also has a positive, kick butt attitude. I agree there is a lot of value to the "therapy!"

  • Amen to that!

  • Ellen,

    What did they say they would do if you are neutropenic on the trial? Watch, pause the drugs, reduced dosing? I'm curious.

    You are such an explorer like Neil Armstrong going to the moon 🚀


  • They said they give you a shot in the stomach. I can't remember what the shot was exactly. The did say it was a thin needle. :)

  • That would be a G-CSF (Granulocyte -Colony Stimulating Factor) injection like Neulasta, Neupogen, etc, which forces your bone marrow to make more neutrophils.

  • AussieNeil, you are practically a CLL encyclopedia. Thanks for telling me what it is.

  • Ellen I received the neupogen shots (3) when my ANC dropped a lot (to 0.6K) after about 3 months on ibrutinib & rituxan (July 2014). The shots were very small & more like a little prick.

    My counts rebounded back & have stayed up ever since. I did not have to skip any doses. I'm at 28 months on ibrutinib & watching the venetoclax trials very closely.

    Fly high for us Ellen! (not angel wings ... yet ... LOL)


  • Interested to read your post. I completed several weeks of IV obinutuzumab plus venetoclax. I was in a trial study which took approximately 10 mons.

    Excellent monitoring by research nurse and haemotologist which will continue for 5 years. I started the program with two days in a apheresis unit to lower white blood count. Drinking lots of water and walking.

    My travel time to the medical centre only one hour. Best wishes to you.

  • Mj,

    AND.... How are you doing? Very well I hope?


  • Thank you, I am doing well. My bone marrow in February indicated good results from treatment. CLL Dr and Nurse happy with the results. I had been in w&w for 9 years.

  • Thank you Ellen ! Your posts give so much hope !

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