Blood Negative MRD: History: My husband learned... - CLL Support

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Blood Negative MRD

spi3 profile image
spi3
19 Replies

History: My husband learned he had CLL in March 2022 (he is muted TP53 and 17p depleted) - he was accepted in a Dana-Farber study for his particular CLL with treatments of A&O&V. (Acalabrutinib, obinutuzumab and venetoclax).He finished obinutuzumab.

Currently: after 11 months, February 2023, of immunotherapy, my hubby's blood revealed negative MRD. In April he will have a BMB to see if this too is negative. If there is a small amount of CLL in his bone marrow he will continue to take A&V for an other 9 months. I'm praying he is in remission.

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spi3
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19 Replies
Feelsolow profile image
Feelsolow

Sending best wishes and fingers crossed for him !

spi3 profile image
spi3 in reply to Feelsolow

Yes his treatments were Godsend. I'm hoping his journey will help others 🙏

CycleWonder profile image
CycleWonder

That’s a wonderful result. I hope the BMB shows MRD as well!

spi3 profile image
spi3 in reply to CycleWonder

Yes his treatments were Godsend. I'm hoping his journey will help others 🙏

vman82 profile image
vman82

Sending best wishes and fingers crossed ! - his current progress is AMAZING to hear !

spi3 profile image
spi3 in reply to vman82

Yes his treatments were Godsend. I'm hoping his journey will help others 🙏

spi3 profile image
spi3

Yes, thank you . What a difference a year makes and immunotherapy, too! He's going golfing with his buddies in two weeks - we are so blessed!

Palmetto profile image
Palmetto

Wonderful news. My husband had only Obin/Ven and never took the full dose of 400 mg. of Venclexta and barely 200 mg doses without stopping and ended up on 100 mg for a total of less than 6 months when because of side effect of very low neutrophils multiple times with other blood work in normal range he was tested for MRD and came back with undetected MRD and bone marrow was also normal. He has been off all treatment since early October 2021 and continues with excellent blood work. He is on monthly IVIG due to several bouts of pneumonia last year. He had been treated with Gazyva twice before with great success as well and was able to go for quite a long period without treatment. He is an older patient and will be 83 in May. Diagnosed at 75. I wish your husband the best.

spi3 profile image
spi3 in reply to Palmetto

Thank you for sharing your husband's journey, too. I'm so happy for you both. 💓 thank you also for your kind wishes!

Ttellig22 profile image
Ttellig22

a very good morning to you sending you both my best wishes, your post has given me hope I was diagnosed with CLL may 2022 saw my consultant this month got to go back in June and having the test to see if I have the same mutations as your husband so I’m a bit scared, I’ll pray with you for remission for your husband

spi3 profile image
spi3 in reply to Ttellig22

The immunotherapy treatments have come a long way. The venetoclax and acalabrutinib are game changers and make folks with the toughest CLL on the same level as the lesser risker folks. Please have confidence and faith forI truly believe in prayer. Thank you too for your kind words.

Kam73 profile image
Kam73

That is great news! I am also Del 17 and TP53. Fortunately I am at stage 0 and hopefully will not need treatment for a very long time. My husband has been doing very well on Ibrutinib. He had BR 8 years ago and then almost 3 years ago went on the Ibrutinib. His is Del 13. It is good news to hear Del 17 folks doing so well. Gives me hope.

spi3 profile image
spi3

Wow both of have CLL - you are both remarkable too! My hubby's Dr stated he expects a cure In our lifetime and my hubby wouldn't die of CLL. Thank you too for your kind wishes!

Catnap7 profile image
Catnap7

Oh that would be so wonderful if your husband doesn’t have to stay on the drugs for a 2nd year Similar markers for me … did the Ibrutinib and Venetoclax trial 2 years Very successful but I had to complete 2nd year even though UMRD was reached the first year

🤞🤞🤞for a great outcome on BMB

Best to you both Catnap7🐈🐈

spi3 profile image
spi3

Congratulations to you too! When did you finish your treatment? Are you still in the study (we signed up for 5 years). Thank you so much for your kind wishes too!

Catnap7 profile image
Catnap7

Hi I finished 2nd year of the two year trial Dec 2020 … Been in remission over 2 years now, so blessed I feel wonderful

Catnap7 🐈🐈

spi3 profile image
spi3 in reply to Catnap7

Yay! God is amazing and so are the Dr's and you too (as a pioneer helping to pave the way for so many in the future) thank you so much for the update and hoping you forever keep feeling amazing.

Catnap7 profile image
Catnap7 in reply to spi3

Yes !!! God is so amazing AND how blessed I was to have Dr Steven Coutre for my CLL specialist Thanks for your kind words

Pearlpink profile image
Pearlpink

so lovely to hear from you all with such positive news! Thank you!

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