Clinical trial

[mickimauser11]

Ibrutinib Venetoax Obinutuzumab cancerfree since January 2018

Going in for checkups every 3 months

[Justasheet1]

Treatment naive or relapsed?

[mickimauser11 in reply to Justasheet1]

naiv

[Justasheet1 in reply to mickimauser11]

Congrats!

[mickimauser11 in reply to Justasheet1]

Naive

[Jm954 Administrator]

Wow! That’s worth celebrating 🎉🎊

[J_88]

Good to hear, Hope it lasts forever.

[Lily_Pad_Master]

Go, Micki! Welcome! I’m in similar trial, only with Acalabrutinib. By “cancer freee,” do you mean MRD-? If so, how log into the treatment before you hit that mark?

[mickimauser11 in reply to Lily_Pad_Master]

MRD negative bone marrow clean no CLL detectable

[OkanaganCLL in reply to mickimauser11]

Wonderful news!! 👍💛🤗

[mickimauser11 in reply to Lily_Pad_Master]

MRD negativ no trace of CLL anywhere hemoglobin 13.8 I had 500000 lymphocites 8 months for me You can always contacting me Im in 5 different english speaking leukemia groups also per messenger

[annmcgowan]

Great news.

Ann

[Elizabetha]

Time to celebrate! 🎉🍸

[Hidden]

Good for you, great news!

[MsLockYourPosts Passed Volunteer]

Was this the trial at Ohio State? Fantastic news!

[mickimauser11 in reply to MsLockYourPosts]

my trial was Ibrunitib Venetoclax and Obinutuzumab I know they have the trial in the States and another one Dr Byrd Acalabrutinib Venetoclax and Obinutuzumab I think Dr Lamana döes Bendamustin Obinutuzumab and Venetoclax also a 3 fold trial at MD Anderson the other big cancer centers probably do them too You will have to ask Im taking no medication exept a thyroid Substitute Im 70 dx with 57 500000 lymphocites Stage 4 hemoglobin 6.1 now 13.8

[nour80]

Greet news,happy for you ...

For how long did you take medicine?

Are you still take any medicine?

[mickimauser11 in reply to nour80]

No more medication just 1 thyroid pill L Thyroxin

[HopeME]

Has this combination been offered or is it planned to be offered in the relapse setting in the US as a clinical trial?

Best,

Mark

[mickimauser11 in reply to HopeME]

Front line treatment they have the trial in the US too Ibrunitib Obinutuzumab and Venetoclax

[Thundercat2]

Hello Mickmauser11,

I hope you will see this as your post is from 3 months ago but I may also be entering this trial. One arm is Ibrutinib/Obinutuzamb and one is with added Venetoclax. I wondered how the treatment itself was, did you experience a lot of side effects? It sounds like they start you off right away with the first two drugs and that seems pretty heavy duty. Would love to hear how it went for you.

Hope you are still doing really well and appreciate any thoughts you have.

Best,

Thundercat

[Brandy16 in reply to Thundercat2]

I realize this post is older but I was curious if you started the trial and what Arm you received if you did. My husband just started this trial two weeks ago. He got the Arm without the Venetoclax. So far so good after the first infusion. He reacted on that one. Other side effects of a little nausea, aches and fatigue. Recently chest tightness when he exerts himself. I hope you are doing well!

[mickimauser11 in reply to Brandy16]

I m cancerfree since January2018 just came back from checkup lymphocites 1.6 hemoglobin 13,6 immunesystem good hadnt been sick the past two years but the therapy wasnt easy got nausea from Venetoclax 2 hours daily then I ate lunch and it got better I had the first time a reaction to Obinutuzumab and later some muscle and joint problems but it got better after a while tell your doctor all the side effects he has some are from CLL some from the medication but your doctor knows I also had Ibrutinib no more medication for me wishing you both all the best

[Thundercat2 in reply to Brandy16]

Hi Brandy,

Sorry I missed this post from you. I am on the arm that your husband is on as well, with Obinutuzumab and Ibrutinib. I just started 14 days ago and posted an update today. I got through the first 3 infusions just fine and haven't had many side effects at all. Just a slight fever yesterday that resolved today. I hope your husband is still doing well! Fingers crossed that we can all have solid remissions for a long, long time!

Take care,

Thundercat2

[Brandy16 in reply to Thundercat2]

No problem believe me I understand. My husband is about 3 weeks in and has had 5 infusions. So happy to say his numbers are all back in the normal range. Not many side effects, mostly minor. We see the doc next week for the first time since treatment got underway. Very excited to see what the next plans are. I hope you continue to see positive results and have success!

[Thundercat2 in reply to Brandy16]

That is such great news Brandy! May I ask how old your husband is? I am 61 and female. Things were going really well after the first 3 infusions and then I started with a temp that went up to 101.2 . I went into the ER because I had heard you don't want to mess with a temp that high. My WBC was in the normal range for the first time in many years and everything else was ok. They think I picked up a virus. I'm kinda bummed because I didn't make it to my 4th infusion and had to postpone it but at least all my numbers are doing well. They gave me an IV antibiotic, hopefully that will get me back on my feet and I can continue.

Hope I didn't scare you, I don't think this is too common. Sounds like your husband is doing fantastic! Very happy for you.

Best

T-cat

[Brandy16 in reply to Thundercat2]

My husband is 47. His numbers weren’t extremely high yet but because they were starting to double they thought he would be a good candidate for the trial. I’m sorry your schedule got stopped but if your WBC was already normal that is great results. I keep waiting for the catch in this treatment. Hopefully you will be smooth sailing from here. I’m anxious to see what the doctor says next week. I’ll post an update. This is truly exciting times with treatments for this disease. Best of luck, I’m sure your treatments will yield the same good news!

[Thundercat2 in reply to Brandy16]

Thanks Brandy. It is a very exciting time. I can't believe how much my numbers have improved. Just hope this is a small glitch and I can get back to the schedule soon. Best to you and your husband!

[mickimauser11]

It is a very effective treatment because it Attacks cancer from 3 different sides from the surface of the cell and inside the cell cll cells have a survival kit they take proteins which help them to survive in the meantime they want a threefold first line treatment BTK Inhibitor + CD 20 remover In my case Obinutuzumab plus Venetoclax which binds Bcl 2 (survival protein) so that the cells own controlling system can be reestablished in CLL support group look for Jeff Follander he published the latest from MD Anderson 3 PDF from Dr Wierda and others

[CLLmoxie]

I am about to start same (ECOG trial) in about a month in Dallas with Dr. Awan.

CONGRATULATIONS.

Any tips?

[mickimauser11 in reply to CLLmoxie]

Make a Plan when to Take teh medication I KEPT it desperate from eating oatmeal in between because it Can interact With other medication f e Heart medication regular Walks 1/2 Hour daily a healthy diet no Supplements no adding of extra Vitamins only doctor approved Stick With your Team Call when necessary Keep them informed

[mickimauser11]

I forgot s th join a local Support group f e cllsociety.org or an Internet group CLL Support group Run by Jeff Follander Is a Good group

[Canuck901]

Awesome are cureenrly taking anything ? Venetoclax?

[mickimauser11 in reply to Canuck901]

no only my thyroid medication almost 2 years now have t been sick either during this time Im 70 now

[Canuck901 in reply to mickimauser11]

What were your markers that’s awesome you are doing well . I heard you don’t want to take Ibruntnib good term as toxicity builds up and so does CLL build intolerance

[mickimauser11 in reply to Canuck901]

Trisomy12 unmutated CD 5. 19 20 23 38 52 79a 500000lymphocites doubling time within hours many lymph nods everywhere hemoglobin was 6.1

[Canuck901 in reply to mickimauser11]

Wish they had these combo trials in Canada . We are behind here