Update- My Imbruvica plus Venetoclax Captivate... - CLL Support

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Update- My Imbruvica plus Venetoclax Captivate trial.

Hoffy
Hoffy
15 Replies

Hello,

I am very pleased to report I am still MRD undetectable in the blood and bone Marrow after almost 1 year!!

My Doctor prefers to say MRD- undetectable instead of MRD Negative.

I am most likely on a placebo. Per the trial I am on either a placebo or imbruvica. I am Very very sure a placebo given the fact that my side effects went away. Imbruvica can has some side effects...:). My nails and finger tips have gotten so much better!!

Over all I feel good. I have done a couple nice ski trips this winter so far. I am some times tired but I use to be that way before CLL as well. My Cpap really helps my sleep as well.

I continue to eat Vegan with a lot of good vegetables , fruit and nuts. I drink a lot of high quality green tea and drink juiced tumeric and wheat grass . I want to eat foods to hopefully fight cancer cells- not encourage them... I try to get a lot of sleep and exercise as well. I recommend movie "Forks over Knive's on Netflix and the book the China Study and Whole if you want to know more. Also the book N of 1 by Glenn Sabin. Being Vegan is also very good for the planet!!

I feel very fortunate, lucky and bless that I got to the I plus V trial given my 17P deleted, Trisomy 12 complex karyotype Unmuated Cytogenetics.

So far so good... I hope it lasts!!!

Be well, Thanks,

Hoffy

15 Replies
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BCTexas

Excellent news Hoffy. Glad to hear you are still MRD negative.

Cheers!

BC

4 likes
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Hoffy
Hoffy
in reply to BCTexas

I should add that I really don’t know if the vegan diet helps a great deal or not. Time will tell.

I do know that a little over 50% of people have achieved MRD negativity after the original protocol.

So I feel very fortunate that I got to MRD negative and got the placebo.

It is very nice to have a rest from the drugs.

Hopefully this will be the new protocol in the future where patients take a combo of targeted drugs for about a year and then get off all drugs for hopefully a long period of time Or maybe I dare say curative...??

Thanks, Hoffy

11 likes
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PlanetaryKim

Great news Hoffy!!!

3 likes
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Elizabetha

Brilliant news! Live your new life well 😊

3 likes
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WarriorPrincess4

This is wonderful news! Keep up the vegan lifestyle and keep the faith.

👏🏻 congratulations.

3 likes
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Jm954
Jm954Administrator

Hoffy, as you know, you've got probably the worst genetics for CLL so for this combination to work so well and for you to have uRMD is fantastic.

Posts like this give us all hope, thank you for posting.

Jackie

11 likes
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Hoffy
Hoffy
in reply to Jm954

Thanks!! I think there is strong synergy between the two drugs- it appears

1 like
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fell

Great to hear!!

2 likes
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noeagaman

Great news Hoffy! I hope this continues for you for a long time.

Chris

2 likes
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Mystic75

Hoffy - I am so thrilled for you! Your journey has been such an inspiring one. I think so many people have been waiting with bated breath to see what the results will be for these clinical trials. Your news is so encouraging for all of us. Big congrats!

D.

3 likes
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Justasheet1

I’m so happy for you! 🎉🥂

Jeff

1 like
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BeckyLUSA

Really excited for you Hoffa!

1 like
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Hoffy

Thanks. Hope your doing good.

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Tortola2019

Hi Hoffy, One toward after this treatment ended do bone marrow stem cells repopulate the blood with normal B-cells and inmunoglobulin levels return to normal? I’ve been trying to find this answer, but haven’t read anything about immune system recovery after this amazing treatment to kill CLL cells.

Thanks for any insights you might have as a front line warrior in this study!

Best regards

Marc

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Hoffy

It is slow but my IGG is improving. My IGG was as low as 465 and now it is 720. The others are low but constant. IGA is 52 and I GM is 16.

My platlets have improved as well and HGB as well,

Be well,

Hoffy

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