Decision made, approval received. Will be starting Acalabrutinib at NIH

Hi all,

Well it has been a roller coaster making a decision for my first treatment. I have decided to go with the ACP 196 trial at NIH and was approved today. As much as I adore Dr.Byrd and OSU, it would have turned my life totally upside down travelling between DC and Columbus for 14 months. I am currently in Portland, OR visiting with my son, wife, and 2 yr. old and 2 week old grandbaby. I have 2 (3 and 1O) near us at home.

I am hoping that the Acalabrutinib will knock things back enough to buy me time until they get the combos further along.

Thanks your for all your support, recommendations, kind words, etc. I have read all the postings in both the ACP 196 and OSU's triple and wish all of you CR's, MRD-, and living life to the fullest

16 Replies

  • Wishing you nothing but the best on your CLL journey. Would love to know how it goes, so keep us posted. Stay strong, Sally

  • You will be amazed by ACP-196 and hopefully the lack of side effects. It is also being tested as a treatment for rheumatoid arthritis. Good luck, but you will not need it.

  • I also hope that you have great success with your treatment. Best wishes

  • Wishing you the very best of luck. I look forward to hearing about your success!!!

  • A friend is doing very well on that trial at NIH. She posts on Perhaps you will connect with her some day.

  • Thank optomistic. Who is your friend?

  • Kirsten. We met through the group, and had a chance to connect in person at the Niagara CLL conference last April.

  • Good luck SandiC

    I look forward to hearing your news when you feel up to sharing.


  • The NIH is truly a national treasure with a wonderful staff in every department. Perhaps we will cross paths there one day when I am there for one of my quarterly ibrutinib checkups. Good wishes to u on your new journey.

  • You'll do great! You made the best decision for you. Enjoy Portland and your family there.

  • I realize this is a late response, but wanted to let you know my CLL doc, Shuo Ma at Northwestern in Chicago, was telling me about how promising ACP-196 is. Good luck! I think you'll do great, particularly since so many are doing so well with ibrutinib.

  • Thanks much... I am hopeful!

  • Sandi - How is the trial going?

  • Hi Pkenn... thanks for asking! The trial is going well. I made it through the first few intense weeks of bmb, 2 lymph node biopsies, ct scan and lots of blood draws. I had some slight headaches for the first few weeks but they seem to have resolved.

    After a few weeks, as expected, my wbc and alc's went up as my nodes are starting to clear. I can't even feel many of them that were there for a long time. I go back to NIH Sept. 7th and should get more results.

    So far, easy peasy. I feel so fortunate to be in this trial. They still have many slots open which I find surprising as all seem to be doing well and NIH is awesome.

    Hope you are doing well! Looking forward to fall and the end of mosquito season. I have now taken to putting on insect repellant every day. Sawyer's Picardin is the best... no odor and it works for up to 14 hours.

    Best, Sandi

  • Hi!

    I work at NIH and was diagnosed with CLL last year and recently finished with the FCR treatment regimen. Could you please provide me the contact person's name at the NIH Clinical Center? I would like to get on this trial at some point.


  • Hi there. Yes, Pia Nierman is the clinical coordinator for the acalabrutinib trial. Her phone number is 301-827-1094

    Best to you, Sandi

    What do you do at NIH?