Update - I am 6 month clear in Blood and node... - CLL Support

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

Hoffy profile image
Hoffy

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

15 Replies

So happy for you! Long may it last 🙏

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

Stay strong!

BC

Good for you! Long may you continue in MRD!

Hoffy profile image
Hoffy in reply to BeckyLUSA

Hope you are doing ok.

BeckyLUSA profile image
BeckyLUSA in reply to Hoffy

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

fell profile image
fell in reply to BeckyLUSA

🙏🙏🙏

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

Graham

💃 wonderful news! It gives all of us hope.

Pam

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

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!!!

Thanks!!

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 😀

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

Congratulations!

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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