I wanted to follow up with everyone. I started the V&I clinical trial Oct 2017. When i started my cancer was at 30% infiltration in my bone marrow. I just recieved my last BMB results and i am now at 0.01%. Im in remission!!!!! Dr. Thompson at MDA says my next BMB results should show MRD!!!
If you have read my previous posts it has not been an easy journey for me. But i have no complaints and im glad i had this opportunity. I will still continue with the treatment for the next year or so according to my doctor. I hope my story gives comfort and strength to others that are dealing with Leukemia. We are all blessed to have these treatments that are available to us today.
Stay strong and best wishes to all of my CLL friends.
BC
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BCTexas
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Congrats on your great news! Always wonderful to hear of another success on I+V to nearly MRD negative. Hope the next time you are free of CLL. Thanks for posting your breathtakingly beautiful blue field of flowers. That really brightens my day! Just returned from trying to convince my local hematologist to switch from I to V monotherapy due to side effect on ibrutinib, but she insists on sending me again to the local CLL specialist. Hope one day soon to be joining the MRD- bandwagon.
BC, my husband and I are in Texas, as well, and he is going to try to get a referral from his new PCP (he has his appt tomorrow) to get into MD Anderson to see a specialist. Do you mind if I ask what your FISH tests showed? My husband is age 37 with Trisomy 12, so I’m gathering research so that when the time comes, we are well informed on the best treatment options for him. Thanks in advance! 😁
It is so great to see your post and read your awesome news!
Thank you so much for sharing your experiences - it is rare to not have some bumps along the way but it always provides strength to others knowing you managed it.
Great news! You've been through a lot in the past year BC and your posts have been of much interest, with nearly all of them reaching popular status. Beautiful photo too!
I hope you now have no regrets about abandoning the natural path; you just didn't have the time to experiment and VI is one of the more promising non-chemo treatments available.
And thank you for convincing me to move forward. I was stuck believing i could heal myself naturally and if i didnt listen to you and others i dont know what would have happened to me. I may not be here today.
I am trully blessed to have found this community and i feel forever greatful for all of the advise and support i have received.
Great news BC! I think 86% of us got to "undectable" by the end of cycle 15. I had a similar reading to you then the last few detectable cells were gone by the next assessment.
Thank you so much for keeping us updated! My father is also in an I+V trial (he began in March in NYC) and is about to do the final week of his ramp-up with Venetoclax. His numbers have been improving at an amazing rate since he began Ibrutinib and the Venetoclax has given it that extra punch. We are hopefully headed for MRD soon. Thank you to this community for giving us the info we needed to see a specialist and seek out this trial!!! And thank you to those who came before who helped treatment options advance to where they are now. It would never have happened without your help!
Thats great news!! The Ramp up was pretty rough for me. Im sure your father will be happy when he gets past the ramp up. This community has been like a family to me.
Im very grateful for all of the support i get from this community.
Im glad to hear your father is doing well. I think thats awesome he has a daughter that cares so much.
Congratulations and thank you for sharing, it means a lot to so many who are on this journey to hear such positive news. I + V treatment is starting to look like the new gold standard in CLL treatment. Hope you continue to do well and please keep posting.
Congrats so far... and wishing you a HOME RUN! Below is from a different forum that I saved into my collection of information. From a highly respected CLL Specialist in New York.
E-mail Topic is: Acalabrutinib, Venetoclax, and Obinutuzumab for Initial Therapy of CLL (AVO) #clinicaltrial
From: Rick Furman……
“ Venetoclax plus a BCR antagonist does look like it might be a HOME RUN.
There are trials testing venetoclax + ibrutinib, venetoclax + acalabrutinib, and venetoclax + umbralisib.
I suspect we will see venetoclax + duvelisib soon as well.
The important question is does the obinutuzumab add anything?
Are we unnecessarily exposing patients to a therapy that is not necessary?”
Great news BC! On a similar trial so positive to hear you are having a good outcome. Hope the rest of the journey is smooth sailing for you. Thanks for sharing.
Congratulations on the good news! Im on the same program and this note gives us hope so thanks for your continuance of postings! I wish you well and may God Bless you and your family!
Dr. Thompson is my husbands doctor and he will start venetoclax in August. He has done well with the ibrutinib so hopefully adding the venetoclax will go well. Glad to hear you are doing well this gives us hope.
Hi BC I’m so happy to hear this news. I know you struggled with the decision to start the trial. I started taking imbruvica/ ibrutinib in August 2017. Feeling great ,numbers are good. I read somewhere I couldn’t get into a trial because of my age (73) wanted to go that route because of the cost of the IB. But I did so much research was on the computer day and night to find grants to cover the cost. My heart is so full of joy for your wonderful news. Enjoy your remission my friend ,hoping this stays for a long long time. God Bless now go and live your life to the fullest. 😘❤️🙏🙏
Is the I/V effective for unmutated CLL? I don’t know my husband’s mutation status yet, but was just curious if it works as well for unmutated patients.
So glad you are doing well. My husband started his V this week needless to say it has been a busy 3 days but he made it and now will take 2 pills/day for the rest of this week and then back to MD for ramp up next week. Thank you for posting it helps so much. My husband also sees Dr. Thompson.
I like Dr. Thompson. Glad all is well. The ramp up period is the most stressful time because you're always at MDA. Keep in touch and let me know how it goes.
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