Great news from my MDAnderson doctor - CLL Support

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Great news from my MDAnderson doctor

DGG1931 profile image
32 Replies

I was originally diagnosed in May, 2011 and had a long 9 year watch and wait.

Feb,2020 Dr Thompson put me on Calquence as I was become a little anemic and this treatment gave me great results.

Feb, 2022 Dr. T and I agreed to add Venetoclax in an attempt to try to reach uMRD and have a drug holiday!

April, 2024 my new doctor (after Dr. T left to go back to Australia), Dr. Ferrajoli ordered a Bone Marrow Biopsy as my PB had gotten down to 0.007 in February, 2024. She called me last week and said the test showed no CLL cells and she was taking me off both drugs! I’m in remission!!!!

I am so thankful for both of these amazing doctors and for MD Anderson and for all of you CLL warriors. You have all taught me so much. I will see Dr. Ferrajoli in August for follow up and hoping after that I can just see my local oncologist and not have to go to Houston but 1 or 2 times a year. May all who have reached this point and those who are still getting there have long and deep remissions.

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DGG1931 profile image
DGG1931
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32 Replies
lankisterguy profile image
lankisterguyVolunteer

🎉🎺👍

BLP1211 profile image
BLP1211 in reply tolankisterguy

Congratulations!!!

Walkingtall62 profile image
Walkingtall62

This is wonderful to read. Well done

DGG1931 profile image
DGG1931 in reply toWalkingtall62

Thank you!

Poodle2 profile image
Poodle2

Briliant news! Enjoy it! May it last forever...also thanks for your words, I am also grateful for this wonderful community.

DGG1931 profile image
DGG1931 in reply toPoodle2

There are many awesome warriors on this site. And thank you for your well wishes.

Justasheet1 profile image
Justasheet1

Enjoy your holiday like it’s your birthday 🥳

Jeff

DGG1931 profile image
DGG1931 in reply toJustasheet1

🎉🎂🥳 celebrating BIG!!!

CoachVera55 profile image
CoachVera55

That is so so so encouraging🙌🏾CONGRATULATIONS 🎉🎈🎊🍾

DGG1931 profile image
DGG1931 in reply toCoachVera55

I want us all getting there and a cure very soon!

Skyshark profile image
Skyshark

Good news. Wonder how long it take for a protocol to appear to wean everyone off BTKi maintenance?

avzuclav profile image
avzuclav in reply toSkyshark

Seven years ago at MD Anderson. A phase II Study of Venetoclax (ABT-199) consolidation for patients currently receiving ibrutinib or acalabrutinib for High-risk CLL (clinicaltrials.gov/study/NC... They've reported data a few times at ASH over the years. It looks good enough to me.

I'm interested in consolidation but haven't found the right trial nor enough data to convince my specialist (yet).

Sushibruno profile image
Sushibruno

I’m very happy for you DGG1931. I would love a drug holiday, I’m on calquence. I’m going to discuss this with Dr. Lamanna on May 9th.

DGG1931 profile image
DGG1931 in reply toSushibruno

Great! I hope it will work out for you. I was very blessed with that combination.

Sushibruno profile image
Sushibruno in reply toDGG1931

🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼. Thank you

Did your doctors discuss their thoughts on Venetoclax retreatment? I start in two weeks. They are doing a Z and Sonotoclax trial at my hospital. I didn’t have time to get into it. Sounds like it is working well.

DGG1931 profile image
DGG1931

My understanding is if I should relapse at some point, I could go back on this treatment. However there are also many new treatments on the horizon as well.

Sushibruno profile image
Sushibruno in reply toDGG1931

Exactly right.

KMac1969 profile image
KMac1969

Dr. Ferrajoli is my doctor as well. I just love her. She is fantastic. Congratulations!

DGG1931 profile image
DGG1931 in reply toKMac1969

She is very smart and thorough. I’m happy Dr. Thompson, who I dearly loved put me with her when he left.

thompsonellen2 profile image
thompsonellen2

Congrats! Enjoy the break!

DGG1931 profile image
DGG1931 in reply tothompsonellen2

Thank you! That’s the plan. We have a Viking River cruise planned for the end of July.

G-F-T profile image
G-F-T

wonderful news just fantastic. What a weight off your mind, get on and enjoy your life 😀

DGG1931 profile image
DGG1931 in reply toG-F-T

Thanks for your well wishes. I feel to blessed.

Txkate profile image
Txkate

Congrats! How wonderful! Enjoy to the fullest🤗!

DGG1931 profile image
DGG1931 in reply toTxkate

Thank you! I pray you are also doing well.

Txkate profile image
Txkate in reply toDGG1931

I just return to MDA after a biopsy of a node a recent PET/CT discovered in my Mesentery. I had been dealing with enlarged neck nodes since Dec and Ultra Sound came back with questions so got a hold of my team at MDA and eventually (my push) for a PET/CT. They agreed and turn out I had multiple areas with some enlargement, but one in the Mesentery (I had to look up where that was, lol) was 3.3 cm. My blood work looked good except for my LDH was high. Long story short I pushed for a biopsy and they agreed. Great news is the Radiologist was able to do a core and a needle of that node and it came back as SLL/CLL with no sign of Transformation. I will meet with a new Oncologist next Friday at MDA in the Leukemia dept as I have always been on W&W in the Lymphoma dept. We will discuss different types of treatment options including continuing W&W. This site has been so helpful in explaining the actual experiences people deal with on the various treatments. I have been on W&W for 14 yrs and there have been so many new advances, but I have also developed some health issues that have to be considered. We will figure it out! Celebrate your hard work won!

DGG1931 profile image
DGG1931 in reply toTxkate

You are in good hands. Let us know how you are doing from time to time.

Phil4-13 profile image
Phil4-13

Wonderful!!!😊Sandra

Angie4now profile image
Angie4now

Great news! Reading it with a smile on my face. 🙏🤗🙏

Tabbytabby profile image
Tabbytabby

I completed V+O treatment in February. Received the results of the ClonoSEQ test 2 days ago. Zero cells detected! Congratulations to you reaching uMRD. Time for both of us to celebrate!

DGG1931 profile image
DGG1931

Congratulations! I’m so happy for you! Praying both of our remissions will last forever!

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