CLL Support Association
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1st week on venetoclax - WOW, not what we expected... Part 2

First THANK YOU, THANK YOU - the amount of support we received from this forum has been overwhelming and has helped us tremendously, AGAIN THANK YOU

We didn't think it could get worse then last week but yesterday was certainly the scariest day we have had since we were diagnosed 7 years ago. TLS was not our issue the CLL has/had decided to take its own course. My husband was not responding to the venetoclax and his WBC had risen to 390 - we have a great relationship/partnership with our oncologist and it was the 1st time we saw the "fear" in his eyes. After we went through all the negatives and what was not working - I asked him if we were in trouble and his response was yes.

He left us alone for a few minutes to catch our breath and have a good cry as both of us were like "deer in the head lights".

The plan - my husband was to be re-admitted to hospital and we moved forward with 2nd dose of 50mg, he also introduced a steroid dexamethasone (sp?) to help with the breakdown of the nodes and we were going watch till the end of the week and if nothing worked then switch to Idealasib (sp.).

This morning my beautiful husbsnd woke up and looked and felt like a new man - we decided to increase the venetoclax to 100mg vs. waiting till next week - the goal was to try to force the drug to work. If everything remains "stable" we will increase to 200mg by the end of week. We are on the FAST TRACK plan vs. the recommended plan and we will remain in hospital for 7-10 days. At this point our DR. would like to see a threat of TLS - just so we know it's working.

Again, thank you for all the prayers, love and support - this fight is a tough on.

18 Replies
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My thoughts and prayers are with you and your husband. Keep strong

Marc

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Scary times no doubt and best wishes beating this. Appreciate the updates. Rooting for you!

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Kind thoughts and prayers dor you both. Not easy for you.

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God bless you. Prayers to both of you.

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Keep as strong as you can .Thinking and praying that things will get better for you both very very soon .xxxxx

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Oh my, what a tough time for both of you and we can all identify with how you must have felt getting that sort of news. You are in very good hands. We are all hoping for the best for you both and send all our love and support from this wonderful community. Your husband is so lucky to have such a loving and supportive wife by his side. Take care, keep us informed. Best wishes to you.

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All these prayers are working!

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My best wishes!

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Thanks for the update. You both have been on the minds of so many of us. Even though we don't know you personally, we really care. I wish you the very best.

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I can't imagine your fears but keep thinking positively. We are all praying for you both!

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Sorry to hear this but sounds like it is getting better. Hopefully you have turned the corner and ready to do well now. We are all praying for good results !

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Your writing is so descriptive and each of us pictures ourselves in the same situation with our CLL/SLL. Praying for you & your husband as y'all move forward. Perhaps, y'all have "turned the corner."

Lynn

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What a steep learning/treatment curve. Your vivid and difficult story is enlightening for others and that's important with a new therapy. Please continue to post updates. Adding my prayers and sincere best wishes.

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Hello NMMP

We are all hoping the good news continues for you both.

Yo are in my thoughts.

Sue

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Oh, I am so sorry that you are going through all this. I hope so much that the drug takes hold and your husband does well on Venetoclax. Prayers and good wishes for you both. Thanks for keeping us informed.

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Will keep you both in my prayers. Stay Strong. Do not give up hope.

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Wow! My heart sank for a moment. I hope and pray for continued good results.

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So glad he is doing better. May he continue on this healing journey.

Jill

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