MRD Negative in the blood and CR on MRI after ... - CLL Support

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MRD Negative in the blood and CR on MRI after 9 months from Imbruvica plus Venetoclax Clinical trial. So far so good...

Hoffy profile image

Hello,

I am please to announce that after my 9th cycle on the Imbruvica plus Venetoclax trial I am Min Residual Disease (MRD) Negative in the blood and Compete Response CR on the MRI. I hope it continues... I am very pleased given I am 17P deleted. My nodes were very big when I started. I was only on WW for 1 year before starting treatment due to node size.

I feel good. I have continue to work and exercise through the entire treatment. Side effects have not been too bad. I have been neutropenic a couple time but they just give me a shot and my ANC comes back up nicely.

I have had an outer ear infection and a toe infection and both were cured with topically antibiotics. My nails are not as strong as they use to be so I now take Biotin and it seems to help.

I will do another test to check for CLL Cells in my blood in 6 weeks. If they do not see CLL again then I will have a Bone Marrow Biopsy at the end of the year ( fun...)

If I am then MRD Negative I will be randomized and either stay of Imbruvica only a placebo. If I am not MRD negative then I will be either on Imbruvica only or both drugs.

Read more about how I got to this trial here:

cllsociety.org/newsletter/q...

Also, Happy New year to my Jewish CLL friends as well. There are many of us... Unfortunately :)

Hoffy

40 Replies

Wonderful news! So happy for you. What a great New Years present!!!

Hoffy profile image
Hoffy in reply to MelioraDay

Thanks !

Hoffy

Thats excellent news. I had my three month doctor's visit today and I didn't want to miss the opportunity of being in the same trial so I signed up today and will start next Friday on Ibrutinib then in 3 months Venetoclax. I thought I could change my CLL on my own by refusing treatment and just go the natural path way but after reading all of the responses on here from this wonderful community I decided I couldn't do it alone. I wish you all the best on this journey and I hope to have the same results as you.

BC

Hoffy profile image
Hoffy in reply to BCTexas

I tried the natural approach first as well but it did not work fast enough for me . The CLL was winning .

Trials are very good because they watching very closely and you get free drugs ....:)

BCTexas profile image
BCTexas in reply to Hoffy

Yes.. Venetoclax will be free for me but I have to pay for Ibrutinib. They told me I would be on the treatment for two years.

Justasheet1 profile image
Justasheet1 in reply to BCTexas

Bravo BC!

Jeff

BCTexas profile image
BCTexas in reply to Justasheet1

😁 Thanks

Hoffy,

I am ecstatic for your success!!

🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🍾🍾🍾🍾🍾🍾🍾🍾🍾🍾🍾🍻🍻🍻🍻🍻🍻🍻🍻🍻🍻🍻

Jeff

Congrats Hoffy! That's great news!

kim

So excited for your results, Hoffy! Hope to be right there with you in about 12 months!! 2 months in on the Ibrutinib. Start the Venetoclax next month. Keeping my fingers and toes crossed.

Great news Hoffy!

Jm954 profile image
Jm954Administrator

So, so happy for you. Reading your post and blog was a great start to my day!

Wonderful news we're really pleased for you.

Amazing news! So pleased for you. Long may it continue.

Fran 😉

Extremely happy for your success!!! It gives all of us hope...the best gift of all.

Really good news Hoffy.

lankisterguy profile image
lankisterguyVolunteer

Hi Hoffy,

Great News! Congratulations-

Welcome to the newest CLL club that many people WANT to join! (MRD neg)

We hope you can also join the No More Treatment Club, but it sounds like that will take 2 years- I hope it goes quickly with no surprises.

Len

Hoffy profile image
Hoffy in reply to lankisterguy

Thanks. It could be even sooner if I get randomize on a placebo after cycle 17. I am on cycle 10 now .

But first I have to get to MRD negative and my bone marrow .

Thanks !

That's amazing news!!!! Good Yontov!

Hoffy profile image
Hoffy in reply to DebLeeCox

Thanks

Thanks for sharing your good news, Hoffy!! Especially love it because my husband starts the Ibrutinib + Ven trial next week through MDAnderson.

BCTexas profile image
BCTexas in reply to Barbshow

I'm starting on the same trial next week at MD Anderson Who is his doctor? Mine is Dr. Thompson.

Good luck

Cll4me2 profile image
Cll4me2 in reply to BCTexas

BCTexas, glad to hear you charted a new course! I'm adding venetoclax next week at MDA. Wish you all the best!

Jim

BCTexas profile image
BCTexas in reply to Cll4me2

Thanks Jim.. Keep in touch.

We can share our thoughts and journey.

DaleFL profile image
DaleFL in reply to BCTexas

Dr. Thompson is great.

Barbshow profile image
Barbshow in reply to BCTexas

My husband, Mark is seeing Dr Jain. We just got back from there. Probably saw you in a waiting area. What a place! So grateful and humbled by everyone there.

Hoffy profile image
Hoffy in reply to BCTexas

I am out of UCSD in San Diego . Dr. Kipps and Choi . They are very good as well.

Hoffy , such fabulous news! So happy for you. These new drugs are amazing. When I was diagnosed in early 2014, my doctor told me that treatments for CLL were rapidly changing- especially for those of us with 17 p. He certainly was correct. As with so many things in life, timing is everything. So thankful to all the scientists , and especially those fellow CLL patients who joined so many trials hoping to help us all.

Wishing you continued health !

Susan

Hoffy profile image
Hoffy in reply to Mcpill

Yes, I really like drug companies !!! They're saving my life !

Good to hear your news hoffy, sounds like an amazing treatment, Terry

Fantastic Hoffy and Happy New Year to you as well.

Hoffy profile image
Hoffy in reply to SandiC

Thanks!

Fantastic news and encouraging for the rest of us. Fingers xd mrd- on the bmb end year.

Hoffy profile image
Hoffy in reply to catnapcrew

Yes. Exactly

Thanks

Hey Hoffy, great news congratulations. Here’s hoping I follow in your footprints.

best, rob

Sounds good,

I forgot to mention I have had periodic dull node pain. I think it is from my nodes shrinking.

I also had some mouth sores. A drop of Green tea oil on my tooth brush seemed to make them go away. Watch out the green tea out can be strong but gives a real fresh clean....

Hi Hoffy

I'm at about the same stage as you on the I+V trial and got the CR news a week ago - all nodes normal size and all blood test results have been in normal range for a few months. The month before I only got the PR result as 1 of my nodes was 16mm (1mm above the cutoff!). I didn't get the MRD assessment though but they took a few extra blood samples so they may be doing that now.

This seems to be working very well for all of us that I know of. No guarantee for how long, of course, but it's a very good start!

Graham

Great. Hopefully we are paving the way for targeted therapy that has limited time use .

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