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CLL Support Association
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Update - I am 6 month clear in Blood and nodes via MRI on Captivate Imbruvica plus Venetoclax trial.

Hello,

I am pleased to report I am still MRD negative in the blood after over 6 months.

My recent MRI scans show my nodes are still normal.

I am most likely on a placebo. Per the trial I am on either a placebo or imbruvica. I am pretty sure a placebo given the fact that my side effects went away. ( see my older posts).

Over all I feel good. I had a couple small infections this summer. One ear infection and one slight skin infections from a bug bite. They were clear up with antibiotics. I always travel with Antibiotics. Also Minute Clinics in CVS pharmacies in the USA are always helpful for small infections.

I traveled to Israel and backpacked in Yosemite as well as other trips.

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 tumuric 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,

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

I feel very luck and blessed ,

Be well,

Hoffy

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So happy for you! Long may it last πŸ™

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Good news Hoffy. I hope this combo is a cure.

Stay strong!

BC

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Good for you! Long may you continue in MRD!

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Hope you are doing ok.

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Thanks! I should find out the end of this week if I am MRD neg!

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πŸ™πŸ™πŸ™

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Fantastic Hoffy! I'm with you too. Hopefully this helps get the combo approved fairly soon.

Graham

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πŸ’ƒ wonderful news! It gives all of us hope.

Pam

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Such great news, Hoffy! My doc sent off my bloods last week to check if I am MRD...here's hoping. I will continue with the Venclexta regardless, but would be wonderful to hear. Fof me, the Venclexta has made all the difference.

I hope you continue to do well. I think about you often. We have such similar profiles.

Enjoy every day, we are so blessed to have these drugs available.

Susan

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Congratulations, Hoffy!!! I'm positively euphoric with the good news from you, Becky and BC!! Sounds like you are living the life - and doing a great deal of travel. Good for you!!

Wishing you continued success and good health~ thanks for the post!!!

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Thanks!!

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Well done Hoffy. You’re doing everything possible to help yourself, I commend that and wish I had the willpower to do the same. Really pleased for you.

Peggy πŸ˜€

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Thanks- I am trying. Vegan has become really easy with substitute meet that is really good. Of course whole: veggies, fruit, beans, grains and nuts are the best though.

The Veggie grill as an example is really good:

veggiegrill.com/

They use Beyond Burgers and they are really good. They are sold everywhere

beyondmeat.com/products/vie...

For Chicken: Gardein is very good.

gardein.com/products/chickn...

Helps save the planet too!! Meat is now the biggest contributor to green house gases.

insideclimatenews.org/news/...

Be well,

Hoffy

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Congratulations!

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Hello,

I am very pleased to report I am still MRD negative in the blood after almost 1 year!!

I am continuing this post and I will start a new one with a more broad title,

My recent BMB showed I am MRD- undetectable.

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

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