I am now in the next phase of the Captivate Im... - CLL Support

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I am now in the next phase of the Captivate Imbruvica plus Venetoclax trial. I have been Ramdomized!!!

Hoffy
Hoffy

Hello,

After taking both drugs for about the last year - as shown in the picture. I am now on the next phase being randomized today for either imbruvica or a placebo of imbruvica.

I went into this arm because I was tested and I am MRD negative in the bone marrow .

By definition I cannot tell what I have but I think I will know quickly based on the side effect profile .

I am a bit concerned if I get the placebo that my CLL could come back relatively quick even though I am am already MRD negative in the bone marrow. My disease was very aggressive before I started the trial .

I was only on watch and wait for a year after diagnosis and my no it’s got very large .

Imbruvica is the gray one and Venetoclax is the tan one below in the picture.

Overall it has been a very good year and three months. My side effects have been not too bad some fatigue some slight stomach issues and brittle nails and fingertips mostly.

Ucsd has told me that many people who were on Venetoclax have gone at least a year without needing treatment again . Hopefully with the addition of imbruvica there will have even a deeper remission.

I will keep you posted!!

Be well!,

Hoffy

29 Replies
oldestnewest

Hoffy, Thanks for the update. May your next phase go as well as the last if not better. Please keep us updated. STAY STRONG J.R

Hoffy
Hoffy
in reply to JR1964

Thanks!!!

Congratulations on MRD negative bone marrow. I hope you were doing the happy dance when you heard the news. Good luck with the rest of the trial and keep us updated with the results. Sally

Hey Hoffy,

Great news 😊 Keep up the good fight and embrace your wonderful remission! Keep us in the loop 🤞

Best,

Fell

Hoffy
Hoffy
in reply to fell

Thanks- Hope your side effects are not too bad,

Hoffy

It's so comforting to have a site like this, with people in the vanguard like you, pathfinding for us. I'm now a year into Venetoclax after just over a year on Ibrutinib. Also experiencing some fatigue, but then I'm 77 next month! Otherwise Fit and well and looking forward to my 100th!

Hope that all goes well in your next part of the journey, especially if you are on a plecebo, and it works well.

Look forward to more news with interest.

David

KL2018
KL2018
in reply to David73

I can’t read enough posts like this! HOPE is a beautiful thing.

Hoffy
Hoffy
in reply to David73

Great! Any other Venetoclax side effects you see?

Congrats Hoffy.

I'm only a few days behind you - I have my randomisation appointment on Tuesday. The trial coordinator told me yesterday that I'll be on the Ibrutinib or placebo arm - yay I'm joining you in the I+V MRD- club!

I'm hoping for the placebo but will be happy either way. It would be good to be treatment free (hopefully for quite a few years), as the I and/or V are meant to work again if we need it.

Graham

fell
fell
in reply to closh

Best of luck, Graham!

Hoffy
Hoffy
in reply to closh

Sounds good!

All the best Hoffy. Keep us updated.

Peggy

I am in my first month of randomization as well. I won't get labs for 3 months. I also worried about being on the placebo, but figured I would go back on them if it comes back. I still feel about the same. My side effects were not that bad. I am first line treatment and hope to get many years. I guess we will see what happens when they finally release some data. I hope they do at the next ASH. I hope this combo cures some folks.

Hoffy
Hoffy
in reply to nkferg

Glad to see another where I am. This morning I did not feel as fatigued. Did yoga over lunch and I had a lot more energy. I think I am on the placebo. But that might be good because I can see how I feel on and off the drugs to compare.

BTW- You can request to get your blood checked before the 3 months just for your peace of mind,

Hoffy

You are cutting a path, perhaps for us all and those yet to be diagnosed. You are all my heroes.

Jeff

Wishing you well! I have discussed this with my doctor. I told him if I was randomized in December, I would definitely know if I was on the Ibrutinib or a placebo. He just grinned and said, that most people would be able to tell if they stopped the Ibrutinib; however, since the testing is so objective, he doubts anyone’s marrow or blood results would be affected by just “knowing” they were or were not taking this drug.

Looking forward to being where you are!

Becky

Hoffy
Hoffy
in reply to BeckyLUSA

Sounds good. I hope you side effects are getting better.

Excellent news! Stay strong!!

Best of luck!! We are all cheering you on!

cllady01
cllady01Volunteer

You who are on this trial have my deepest respect. I know there has to be a certain amount of anxiety (stress) from the changes you have made from one med. to another, and now another change.

Here's hoping for an uneventful transition from one regimen to the next and a long non-progression. Your journey is of the most interest to us all.

Blessings!

Thank you!

MRD negative, great news! Thank you for paving the way for those behind you.

Kim

Wonderful news. I hope that those on the placebo sail on through life and that this is a combo that will allow patients to go off daily meds and restart as needed.

hallo Hoffy, congratulations on your good results. I have been on Idealisib for past 24 months my blood results are ok. As I understand you had a bone marrow biopsy. Was this done under local anasthetic? was is painful? please let me know. Thanks Emma (I do live in England)

Hoffy
Hoffy
in reply to eggemma

I did it with a self-administered martini before and that seemed to help a lot compared to other times!!!:)

eggemma
eggemma
in reply to Hoffy

Hi Hoffy,many thanks for your reply. Does that mean you never had a local anaestetic?

If I may ask you do you live in England. kind regards Emma

Hoffy
Hoffy
in reply to eggemma

Local not other anaestetic . That is why I had a martini before the procedure,

Some people get some type of gas or something to relax but that is more complicated,

It is not too bad with a Martini,

thanks,

Mark

I am so excited for you, Hoffy, and many thanks for all your posts updating us with your experiences on this trial. I'm feeling very positive thoughts for you, Mr. MRD negative!

I know someone whose husband has 17p, and became extremely ill and had to be hospitalized. He was treated with ibrutinib (only) in 2016 for less than a year and had to go off due to side effects. However, when he went off, his counts were within normal range and stayed that way for about a year. When they did start going up, it was minimal - they did not increase quickly. Last time I communicated with her earlier this year, his counts were still stabilized. Of course, this is only one person's experience but it was something we considered when my husband agreed to participate in the ibrutinib/venetoclax fixed duration cohort. Giving your body a rest from the medication and restarting at a later time, if needed, is definitely something we considered.

All the best to you!

D.

Hoffy
Hoffy
in reply to Mystic75

Thanks

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