Complete Remission

[habsrule]

I was at the hospital on the 14th. After getting back my results my doctor told me that I was in complete remission, and no signs of any hemolytic Anemia left in my body. This is amazing as I've only been on Ibrutinib for just 3 months & 2 weeks. My biggest surprise was that after examining me he said that my spleen is normal. I haven't heard those words since 1999. Always was enlarged. Can't say how long the remission will last, but for the time being, I'll take it.......

[Naka]

That's wonderful news!! I'm so happy for you. Did you have hemolytic Anemia when starting Ibrutinib?

[habsrule in reply to Naka]

Thank you... At my previous visits with my doctor he did tell me that there were signs that I did have hemolytic markers left. The LDH showed it... This time he said there were no signs of it left in my body.

[Sepsur]

Great news 🚀🚀

[cajunjeff]

That's great news habsule.

I find "remission" is a word that can have different meanings to different people in cll. One meaning, likely the one your doctor is using and used with many people on ibrutinib, is simply that our labs have normalized and we have no visible or palpable nodes.

Most ibrutinib remissions only last while we stay on ibrutinib. An ibrtutinib remission is typically not like an fcr remission where people get off their cll meds until they relapse, if they do relapse.

For people taking ibrutinib as a first treatment, no one knows how long they can stay on ibrutinib and have it continue to work. At 7 years out ibrutinib is still working for over 80% of first time users by some estimates. For the relapsed group ibrutinib was working for 32% of people 7 years out.

onclive.com/conference-cove...

In clinical trials remission is often associated with mrd negativity, meaning there are no cll cells to be found in our blood or marrow.

I have been on ibrutinib almost two years now and my labs were close to normal last visit. I hope on my February visit they will be. That would technically put me in remission, but only while I stay on ibrutinib. While my labs might be likely, its highly unlikely I would be mrd negative if tested for it

There are a very few folks who get mrd negative on ibrutinib alone. There are a lot of people getting to mrd negativity by adding venetoclax to their ibrutinib.

I'll take my cll victories as they come and hope to join you in being in some sort of remission next month. Congrats again. I had hemolytic anemia as well. It was awful. Mine has been under control for a couple of years. They will do a Coombs test again for it in February, but from what I have read most likely my Coombs test will stay positive and I will be at some continuing risk for AIHA. Ibrutinib is known to control AIHA, so who knows, maybe I will take ibrutinib for life. I can do that if need be.

[habsrule in reply to cajunjeff]

We're both in the same situation... I went into CR in 1999 after 6 cycles of FCR. Cll returned about 2 years ago... Got autoimmune hemolytic anemia the summer of 2018. Wan't a pic-nic.... Bottom line, the most exciting thing of my recent visit was being told that my spleen was normal. How long I remain in CR is a toss up, but I'll take it as long as it lasts. I know that I can't stop Ibrutinib as when I did my chemo cycles and when I finished I didn't have any more treatments for almost 9 years.

Best of luck to you....

[cajunjeff in reply to habsrule]

I do not have any data or study to support this, but I think the fact you had such a long remission on fcr puts you in that part of the relapsed group who will do very well on ibrutinib for a long time. In the study I linked to, I assume within that relapsed group there were people who have had multiple cll treatments with much shorter remissions than you had.

The question going forward for many of us on ibrutinib now is at what point, if ever, do we add a drug like venetoclax and try to get in a deeper type of remission allows us to get off all drugs.

I am going to have that discussion with my doctor at md anderson on my visit next month.

I think two schools of thought are out there. One is to not rock the boat that is floating perfectly fine and stay the course on ibrutinib. Thats where my doctor was with me on my last visit. He was tempted to add venetoclax then, but wanted to watch the data on the trials for another six months.

The other school of thought is that ibrutinib could have long term toxicities we do not know about yet and hitting our cll hard with another drug, while ibrutinib is at its strongest, could give us long, treatment free remissions.

I suppose as it is with many things cll, it might be that staying on ibrutinib alone is best for some while adding other drugs to it is best for others. Part of me hopes my doc decides to add venetoclax next month, part of me wants to stay the steady, relatively stress free, course I am on.

One thing for sure, when we get good news like you did we should enjoy it. Anyone who has had AIHA like you and I did, can never take our good days for granted.

[habsrule in reply to cajunjeff]

Please let me know what happens when you next see your doctor. I truly enjoyed reading your insight to my situation. All the luck in the world to you....

[annmcgowan]

Wow! that is fantastic news 👍 well done. Long may this last.

Ann

[noeagaman]

Great news! This sounds like a good reason to celebrate. I hope that you have many years of good remission and good health. Also, that sure was a long remission from FCR that you got. I hope that I have at least half of that since I had to stop early after four rounds. We'll see...

Chris

[Canuck901]

What are your markers ?

Remission after 3 months is pretty incredible and unique.

Excellent news

[habsrule in reply to Canuck901]

I don't know what markers you mean, but the doctor showed me that my Lymphocytes# was 2.2... Hgb 147

[Canuck901 in reply to habsrule]

Makers are like mutated or unmutated, 11q 13 q 17p del or the TP like TP53

[habsrule in reply to Canuck901]

I have no idea..... Only one that I do know is that I have CD38

[Newdawn Administrator in reply to Canuck901]

Amazingly not everyone knows Canuck (some don’t choose to know) and in some areas, testing isn’t automatically offered. Took me over 6 yrs in the U.K. and I still don’t know my mutational status!

Well done habsrule. I’m not sure how your doctor has measured for the complete remission because it normally involves a flow cytometry test and bone marrow biopsy but the main thing is your blood levels have now normalised and your spleen normalised. Did you have a CT scan to show that?

Long may this last! 😊

Newdawn

[Canuck901 in reply to Newdawn]

Hi Newdawn but I thought believe that knowing markers is important in the trearmentn plan .

Isnt that part of the FISH test ? In Canada anyway.

I always ask on here because it’s good to see how people with markers seem to respond better to certain markers

[Newdawn Administrator in reply to Canuck901]

It’s essential that they eliminate TP53/17p for people going onto trials which include a chemo element and of course for FCR generally. They only did a single probe to establish this for me. The IGHV hyper mutational test isn’t routinely offered in the U.K. as it doesn’t yet influence treatment decisions.

Hope your father is well.

Newdawn

[Canuck901 in reply to Newdawn]

Our CLL specialist told us for TP53 and 17p they don’t do any FCR as it’s too hard on the person and has a short remission

[Newdawn Administrator in reply to Canuck901]

Yes that’s what I was saying Canuck. People with TP53/17p are not eligible for trials containing chemo and it’s no longer given as a general treatment either.

Newdawn

[cajunjeff in reply to Newdawn]

Dawn, this was the point I was making in my earlier post. Many doctors who treat with ibrutinib consider someone to be in complete remission if they have no nodes, no cll symptoms and if their labs have normalized. Inside of a clinical trial they use a bone marrow biopsy to assess mrd negativity to determine the depth of remission. One can have an mrd positive complete remission.

Outside of a clinical trial bmb's are not typically done with ibrutinib unless they are thinking about stopping it. That's my understanding.

ashpublications.org/blood/a...

[LovelyLilyGirl]

💗💗💗🎉🎉🎉 very happy for you.

[WinJ3]

That is wonderful news!!

[C180ji]

A good start to the year, that is wonderful ❤️

[Lysie2]

Great news . Keep telling yourself that you are done with it .

[Horatio2]

That is wonderful news!!!!!

[The-Man-with-a-Plan]

Now that's amazing!

[2016miniman]

Congrats! Go out an celebrate!

[Fran57]

Fantastic news! That’s what we want to hear!

Celebrate lots and stay well.

Fran 😉

[edelweiss]

We celebrate with you!💐

[bayside64]

Great news!!

[SwiftT]

Wonderful news. Hope it last a very long time for you. 🙏🏻❤️

[Smakwater]

Bravo! habsrule.

[starsafta]

Having normalized labs, nodes, and spleen is such a relief. Glad you've had such a good response.

I hope I've interpreted correctly, in your first reply to cajunjeff, that you know you have to continue taking Ibrutinib. I recently tested stopping Ibrutinib after 3.5 years, with normal labs and nodes for almost 3 years. Within a week, some of the nodes in my neck began to enlarge. I resumed Ibrutinib, and they receded within two days. So I guess one could say that we have CR as long as we continue the drug.

[habsrule in reply to starsafta]

You are 100% correct. I understand and accept the situation. My only hope is that within my lifetime there will be some drastic new discoveries. Thank you for your comment.