Hi all just wanted to share some good news with you. I'm 8 cycles in to my phase one trial of Obinutuzimab plus Venetoclax at Barts Hospital in London and am now living back in Australia and commuting every 3 weeks to meet the trial requirements and collect my drugs.
Just had an email from Professor Gribben telling me my cycle 7 CT scan had come back completely clear with no signs of disease. This is big news for me as I am more SLL and it was my lymphadenopathy which was worrying everyone most. I had a post cycle 6 BMB which found MRD of 0.0345% and I'm hoping this will also be clear by my next BMB in two months time.
I am so happy and relieved that this drug combo is working for me. I only had 5 cycles of the obinutuzimab as I developed an allergic reaction to it in the end and it looks like the Venetoclax monotherapy is now working well on its own. I have absolutely no side effects (other than jet lag!). So much hope for all of us.
How I wish I had some whoop, whoop little figures to do a lap of delight Deb but imagine them anyway and a big smile from me at your wonderful news! The tremendous sacrifice and family separation makes this result worthwhile.
How you're coping with the travel is beyond me but you must be racking up some incredible air mile credits! I'm a fidgeting nuisance on a 4 hr flight!
Is there no way of air mailing these meds once the checks have been completed or is it essential to be seen each time? No doubt that's all been considered however.
My drugs actually had to be posted to me last week after my blood test, examination and CT scan, as my 20hr turnaround in London stupidly didn't give me enough time to get the drugs dispensed (won't make that mistake again). I had a couple of weeks in hand which bought me time for them to cLear customs in the mail here.
I'm hoping June and July may be my last monthly trips as Prof Gribben is appealing for the sponsor to allow me to go to 3 monthly appointments early. It still means I will have done 5 monthly trips in a row and yes my frequent flyer status with Qantas now puts me in their top 0.03% of flyers so they have really been looking after me!
I hope they do let you o to 3 monthly trips. It must be so grueling. Plus the expense for your bank balance. Really pleased for you. Do you have to keep taking the Ventaclax for life?
Thanks for sharing DebInOz ... SLL here & now 68 & on ibrutinib for 2 years. Dr said average for relapse is 3 years on ibrutinib so I am starting to think about alternative drugs. Your combination will likely be at or near the top of my list. I am doing fine just have typical ibrutinib side effects ... fatigue, etc. My last BMB showed 20-30% involvement & that was in July 2014 after 3 months on ibrutinib.
I can't imagine making the long plane trips that you have to make. Must be exhausting. We flew once from DFW to Hawaii & that seemed like a long time but was probably only 7 hours or so. Wishing you the best!
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