Just the latest update on me - I’m still MRD negative 9 months after my CAR-T for aggressive CLL at the Peter Mac in Melbourne. Sadly the trial has now closed its CLL arm so only 9 of us in the world got this treatment for CLL. Here’s a more detailed update shared with the Leukaemia Foundation for those who may end up on a similar path.
There are more articles on there about me too if you search my name and I’ve blogged in detail about the early days of the trial (must update it soon) at Abtandme.com.
This is the first drug free remission I’ve had since diagnosis 10 years ago and was my fifth line treatment.
Best wishes to all,
Deb x
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Thanks Jackie - I honestly don’t believe here had I not advocated for myself which is why I’m trying to pay it forward by sharing with others - have lost too many friends along the way xxx
Thank you so much for sharing this update and providing the links to your amazing background to the forum. Many newcomers will not be familiar with your story, which cannot be told often enough.
Congratulations and please continue to share your story. Please thank your children as well - we all have benefitted so much from their mother's attention.
I’m very happy for you! Thanks for writing about your journey. Your efforts are beneficial to many CLL patients worldwide. How did the other CLL patients in the trial make out? Hopefully, they all did as well as you!
As a newcomer I'd love to read your story and how you reached this point. My husband had been on WW for two years and news such as yours is a great encouragement.
Hi Susan - yes it’s been a long journey - this is the summary I’ve put together for a presentation I’m doing shortly but it sums it up nicely. The hardest part was having to move back to the UK from Australia to enter my first clinical trial which I stayed on for 2 and a half years. The whole story is on my blog - abtandme.com - wishing you and your husband a long W and W, so many treatments now and reasons to be optimistic.
Dec 2011 - Dxd 2011 at age 38 with aggressive SLL del 6q unmutated IGHV
Jan 2013 - FCR, Cabrini Hospital, Melbourne, Australia – MRD+
Only 3 of us got it in Australia but I believe the other 2 are in complete remission too - the only reason our arm closed was because it was so hard to recruit that it was delaying progress of the drug (you had to have stable disease on ibrutinib so a bit of a difficult decision to make given it’s phase 1 and unknown so I get it - I’m hoping my bravery is being rewarded but when I was sick and in pain 11 days post infusion I said what does the data say about when this will end and my doctor said Deborah you are the data!). For the record it only lasted 36 hours but was pretty scary at the time.
Wonderful news, Deb! You have been very courageous entering those trials for the ultimate benefit of us all. I sincerely hope your uMRD lasts forever.Cheers. -Jim.
So glad you are doing well. Thank you for being very generous with the community, including with me personally before I did my obinutuzumab, ibrutinib, venetoclax trial in June, 2016. I feel like my journey is a year or two behind yours, and I appreciate the view of "coming attractions" for me. Ellen
Oh boy, do I LOVE KNOWING you and your family are enjoying this news!! Thank you for sharing all of your journey. Continued well wishes for you and many happy memories to be made along the way!! ☀🌼✨
You are a shining example of how keeping up on latest CLL advances and taking advantage of available trials are worthwhile endeavors! Oh, and a big helping of persistence! So many of your treatments came available for you Deb just in time given progression. Thanks for a wonderful update, very very happy for you and your family. 😊
I am so happy for you! My twin sister went through a bone-marrow transplant back in 1996 for SLL. I wish she had survived long enough for today's amazing treatments. I am very proud of you and thankful for this group that allows us to share in your success. Congratulations!!!
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