My Dana-Farber Trial Update - CLL Support Assoc...

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My Dana-Farber Trial Update

Lily_Pad_Master
Lily_Pad_Master
14 Replies

Started Acalabrutinib in August and had a couple of headaches over the first week. Called my care team. Tylenol basically stopped the headaches. They never came back. Zero side effects from Obinutuzumab. Today, I completed my first dose of Venetoclax at 400 mg after titrating up for a month. Maybe a little bit of tiredness last week, which also could be due to the pace of weekly four-hour drives to Boston and back for a month. A touch of nausea last week. Was that related? Who knows. Who cares. My blood results and metabolic panels are all normal, this after just fewer than four months. Four. Easy. Months.

I am fortunate, and I’m not alone. Most of the others I know in the trial are also having a relatively easy time of it. I seem to be having the smoothest go of it, that I know of, but I’m younger, at 57, than most, and fit (not to say they’re not). I’m IGVH unmutated, so this trial should provide significant benefit to me in comparison to FCR.

For those new to CLL, don’t be afraid. Find the best CLL specialist you can. Learn. Advocate for yourself. These can be hopeful times. My hope is that we generate great data from this trial—data that advance the state of care for us all. Along the way, I hope to be free of meds, even if only for 5-10 years. What a treat that would be! By then, newer and better treatments will be available. Soldier on, fellow CLL’ers!

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LindaD525

Excellent news! So happy to hear that all is going well. My husband is heading back to see Dr. David’s next week and the anxiety has already begun... not even really sure what I am anxious about... but posts like yours bring us so much relief that everything will be okay and that we’re in the best hands. Take care and happy holidays! Continued prayers to you and yours

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Newchallnge

Your in great hands🙏

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Lily_Pad_Master

One of the nurses was joking with me today about how nervous I was. In hindsight, it seems, well, yes, a bit humorous, given how well it’s been going. I’m not nonchalant. These are powerful drugs, but they seem to be aiming their power at the cancer, leaving me much better than I was before.

I’ll be there next Thursday. Maybe I’ll see you!

Glenn

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Newchallnge

Great news!🙏

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Sushibruno

Wow Wow wow I'm so happy to hear that the treatment is going well circlesaba, it really does gives us all hope☺.

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Lily_Pad_Master

Thank you! A-V-O laughs in the face of my un-mutated status!

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Elizabetha

Fantastic news! You must be so happy and relieved.

I am delighted to hear such stories as I am due to start Venetoclax on Boxing day. Ibrutinib had been fine so far, dry nails and hands and a couple of mouth ulcers but nothing major. Hopefully I will have a similar experience to you. Fingers crossed.

Take care and enjoy your new health 👍

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Lily_Pad_Master

Thank you, Elizabeth. It seems to be a new day for all of us in this trial so far.

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starsafta

Mazel tov.

Refua Shlema.

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Lily_Pad_Master

Thank you so much! We all seem to be doing very well in this trial.

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SlowCLL

Great news, It must feel really good to get back a measure of control over your life. Your story gives us a lift, thanks for sharing.

All the best,

Owen

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Lily_Pad_Master

Thank you, Owen. It feels great. Still wondering about what lies ahead, but very much pleased with the *now*.

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SouthFloridaLady

Awesome to hear your fabulous news!

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Lily_Pad_Master

Thank you so much! How are you?

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