CLL Support Association
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1st week on venetoclax - WOW, not what we expected... Part 3

Finally home!!

Quick update - my husband's WBC keeps dropping and this morning we were at 75, 119 (yesterday), 390 (Tuesday) and a significant decrease in his nodes yeah!!!

Our Ongologist decided to keep us on 100mg as we continue to see positive progress and re-evaluate on Monday to either increase or remain at 100mg which would bring us back to the recommend ramp up schedule. However he will be on vacation next week - some nerve abandoning us, lol.

So nice to have my husband back where he belongs and I've already started cooking and baking to "fatten him up".

Thank you again and sending lots of love and prayers for everyone who either is having a good or bad day.

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Aww. We take our normal, slightly boring sometimes, lives for granted don't we. Enjoy the break.

Peggy

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Great news and so glad he is back home! Sending much love and prayers your way!

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Absolutely fabulous news! Praying for continued improvement.

enjoy "fattening" him up! :)

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It's so encouraging to hear your joy. Thanks for the positive updates, and congratulations.

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This has been an "edge of the seat" story! I'm glad the V has finally kicked in and is doing it's stuff.

Stay strong.

Graham

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Great to hear good news .Enjoy your holiday and relax after what has been a very scarey few days .

Brenda

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So glad for the great news!

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This is very good to hear. I start in a few weeks!!

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By the way how long was he off imbruvica before he started Venetoclax? I am also 52 and 17 P deleted. Is the plan still to do a bone marrow transplant when stable? Or just stay on Venetoclax as long as possible first.

I am very happy he is doing well now. He should do even better at a higher dose one would think .

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Hi Hoffy,

My husband took his last dosage of imbruvica on Friday Feb.. 24th and started VENETOCLAX on Monday Feb. 27th - not sure if I mentioned but he is also 17P.

The plan is to get him stable and "healthy" enough to move forward with the stem cell transplant. The concern with staying on V is he has not been able to maintain the statistical lengths of progression free survival and we understand that his CLL is very aggressive and the change of him failing on V it is very concerning.

Our Hematologist discussed having him on V for 6-7 months and a search for a donor has already been initiated.

Hope this helps and sending positive thoughts your way.

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Sounds good. I hope he is doing good today. CAR-T might be an option as well but hear it still has some issues with CLL . Keep us posted and we wish the both of you well!

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We looked at CAR-T back when he was diagnosed in 2011 but they were still so far away - we are certainly going to explore prion to committing to BMT - right now we are really focused on getting V do want it needs to - but thank you for the suggestion this is why this forum is great - everyone understands the fight

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Thanks. I hope he is doing better today.

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It is a year later how are you doing. My wife has been on venetoclax 5 months all blood work normal an feeling good. She is complex karotype and 13 q and 17p etc.

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Hi Knotagoat,

My husband did not stay on V for very long - the goal was to get him “healthy “ enough to move to a stem cell transplant. We ended up adding rituxan with V (at my husband’s recommendation to our haematologist) which was very effective. He had his stem cell transplant back in Nov. 2017 (I did post his progress if you and your wife wanted to review) and he has been managing very well and his last bone marrow biopsy was 0% detection of CLL/MRD negative!!

The process was and continues to be overwhelming but he is really doing well - we actually just got back this morning from a 5k hike which is huge progress.

Glad to hear your wife is doing well and wIshing you both continued success on V. This CLL ride is overwhelming thank goodness for this forum.

Take care,

NMMP

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