Venetoclax/Ibrutinib update: Hi I wanted to... - CLL Support

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Venetoclax/Ibrutinib update

BCTexas
BCTexas

Hi

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

68 Replies
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lankisterguy
lankisterguyVolunteer

Another success for Venetoclax, we hope to welcome your to the MRD neg club soon.

Thank you..im looking forward to joining the club soon!

I agree with Lankisterguy, looking forward to welcoming you to the I+V and V Mrd -ve club soon.

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.

BCTexas
BCTexas
in reply to Jillinill

Thank you. You should try and see if you can get on Venetoclax. I think with Ibrutinib its a good combo.

Cheers!!

Congratulations!!!!!!! That is such fantastic news!!!!

BCTexas
BCTexas
in reply to CaCo82

😁👍

CaCo82
CaCo82
in reply to BCTexas

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! 😁

BCTexas
BCTexas
in reply to CaCo82

Hi CaCo82

MDA is a wonderful facility. I dont have my FISH results at the moment but i can send the info to you when i can.

You should try and see if your husband can get on the same trial when he's ready.

Cheers!

CaCo82
CaCo82
in reply to BCTexas

If you don’t mind sharing when you get them, I’d sincerely appreciate it.

And I hope and pray that he can get involved in a trial like yours and have similar results. I’m sure you are on cloud 9 right now. ☺️

Two awesome I/V posts today!! Fantastic news, BC!!!

BCTexas
BCTexas
in reply to fell

Thanks 😁

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.

Time to celebrate!!!!

D.

BCTexas
BCTexas
in reply to Mystic75

Thank you! 😁

AussieNeil
AussieNeilAdministrator

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.

Neil

BCTexas
BCTexas
in reply to AussieNeil

Thank you Neil

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.

I have no regrets!

Cheers!

Very good, do you get randomize now?

BCTexas
BCTexas
in reply to Hoffy

Hey Hoffy,

Not yet.

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.

Graham

BCTexas
BCTexas
in reply to closh

Thats excellent! Praying for a long remission.

Cheers!

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.

Cheers!

Congratulations on the good news BC. You’re a strong man. Continued good health. Sally

Thank you!!

Good news. I am so happy for you.

BCTexas
BCTexas
in reply to dmmck

Thank you. Feeling good.

Excellent news bc x so good to hear that you are winning the battle x

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.

BCTexas
BCTexas
in reply to Redlion

😁👍

Great news about your remission BC, God bless, Terry

BCTexas
BCTexas
in reply to terryI_uk

Thanks Terry!

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?”

Rick Furman, MD

BCTexas
BCTexas
in reply to tekusa

Good information. I think Venetoclax is going to be the Gold standard. They can use it with so many other combinations.

Cheers!

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.

Sheila

Thanks Sheila...good luck im sure you will do well. Stay positive.

Hi BCTexas and thanks for the update. I started on Ibutrinib a week ago with Venetoclax to follow in two months. Your story is great news !!!

BCTexas
BCTexas
in reply to philbrookes

Hi Phil

V+I seems to be a winning combination.

Good luck !

Congratulations, that's great news!

BCTexas
BCTexas
in reply to jijic

Thank you. 😁

So glad to hear! Thank you, clinical trial warrior! You're making it easier for all of us not so far behind you.

Im glad. I hope my story helps others on the CLL journey. Others before me have helped me on my journey. We are family.

Cheers!

Yes we are!! :-)

Wonderful news 💃

BCTexas
BCTexas
in reply to migirlusa

Thanks migirlusa.

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!

BCTexas
BCTexas
in reply to Emcee1

Thank you and god bless!!

Congratulations on your results. All the best for the future

BCTexas
BCTexas
in reply to Fastbike14

Thank you!

Best wishes to you!

Thank-u for sharing , it gives me much hope ❤️

BCTexas
BCTexas
in reply to dlheinz57

😁

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.

Excellent. Keep in touch.

Dr. Thompson is great.

Are those of you who are MRD negative discontinuing treatment? If not, what is the plan for the future?

My doctor said i will be on the treatment for 2 years even if i reach MRD. After that im not sure.

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. 😘❤️🙏🙏

BCTexas
BCTexas
in reply to Corkyrissa

Hi Corkyrissa,

Thank you for the kind words. Im glad your numbers are good and you're feeling good.

Hopefully some day we will both be cancer free. But Until then ...cheers!!

Best Wishes to you my friend!

BC

I am completing the forth week of a trial with I/V at MDA and my blood work is looking good. Encouraging to hear your positive updates.

BCTexas
BCTexas
in reply to edhooks50

Good luck!! Im sure you will do well. Many on the trial are doing very well. I/V seems to be a really good combination.

Cheers!

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.

AussieNeil
AussieNeilAdministrator
in reply to CaCo82

Early trial results showed no response difference between mutated and unmutated CLL with Venetoclax. There may be more comprehensive data since then.

BCTexas
BCTexas
in reply to CaCo82

Yes. Im 17p unmutaded.

So happy for you! Hope you move right on up to MRD negative!

BeckyL USA

BCTexas
BCTexas
in reply to BeckyLUSA

Hi Becky!

Thank you!! Looking forward to MRD.

I hope you are doing well.

Best Wishes

Wonderful news! I hope this leads to being able to go off of treatment permanently. This trial is giving such promising results so far!

Me too. I am on the treatment for 2 years. Hopefully thats it.

Good to hear from you.

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.

BCTexas
BCTexas
in reply to caregiver76

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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