Stopping ibrutinib and imaging in CLL - CLL Support

CLL Support
15,176 members24,345 posts

Stopping ibrutinib and imaging in CLL

bkoffman
bkoffmanCLL CURE Hero

Hi,

I stopped ibrutinib after almost 8 years. I discuss my thoughts and emotions around saying goodbye to my friend who saved my life: cllsociety.org/2020/03/stop....

There is a role for imaging in managing CLL when there is an indication, but no role for “routine” imaging as Dr. Lamanna explains at iwCLL 2019 in Scotland in the article by Tom Henry, the CLL Society’s Ask the Pharmacist expert: cllsociety.org/2020/03/iwcl...

Stay strong.

We are all in this together.

Brian

Brian Koffman MDCM (retired) MS Ed

Co-Founder, Executive VP and Chief Medical Officer

CLL Society, Inc

cllsociety.org

49 Replies
oldestnewest

crossing my fingers for you-and for me. I see Dana Farber in 3 weeks. I think jcar017 is in my future.

81ue
81ue
in reply to Ivotedfornixon

liso cel - next on my list of what to ask my doctor about

lymphomanewstoday.com/2020/...

Ivotedfornixon
Ivotedfornixon
in reply to 81ue

its known as jcar017. i will be discussing with Dana Farber among other things in 3 weeks.

Courageous choice after 8 years. Best of health to you!

Wishing you well on the next stage of your journey Brian. You are truly an inspiration.

cllady01
cllady01Volunteer

Thank you for sharing your situation. The very real possibilities of aging does make the future for you using Ibrutinib risky. And, the stopping of the treatment is an unknown.

So sorry the ITP is back. You are in an experimental stage right now and it most certainly will be of value to get your results in the record books. Thank you for being so brave.

Best wishes for sending the ITP packing.

bkoffman
bkoffmanCLL CURE Hero
in reply to cllady01

No ITP. Out was a theoretical concern. Platelets are great.

cllady01
cllady01Volunteer
in reply to bkoffman

Sorry, I misread your letter---So good to know you are all clear. Hoping for that to be the case for a loooong time.

Sushibruno
Sushibruno
in reply to bkoffman

Hoping that You're cured Brian 😊!

bkoffman
bkoffmanCLL CURE Hero
in reply to Sushibruno

Me too.

Praying for you and your friend. 🙏🙏🙏

A scary decision to make. I wish you success and continued remission. You put a lot of thought and study into this and whether it would be right for your situation, your results, and your past treatment history. Sharing your knowledge and experiences here and CLL Society has helped so many people

bkoffman
bkoffmanCLL CURE Hero

Thanks

Abc123qaz
Abc123qaz
in reply to bkoffman

Good luck for a healthy long future Brian. I’m starting my journey on Ibrutinib this Monday and feeling nervous with the covet19 situation. I won’t be monitored in a hospital setting. Any advice appreciated? Eileen

bkoffman
bkoffmanCLL CURE Hero
in reply to Abc123qaz

Ibrutinib may be actually mildly beneficial for CLL patients with COVID-19. Modulates the immune response, as it does with CAR-T. It is being studied. The side effects are usually mild, but muscle pains can be severe. Bruising and rashes are common and not dangerous most of the time. Heartburn, mouth sores, and diarrhea too. They all pass. Irregular heartbeats (atrial fib), major bleeding and hypertension are more serious. Side effects are worst at the beginning and get better over time for most. I had the bruising and the muscle cramps and pains that were quite severe. Not much else. Felt better overall as the CLL melted away. Stay strong, we are all in this together. Brian (CLLSociety.org)

Abc123qaz
Abc123qaz
in reply to bkoffman

Thank you so much Brian.

Eileen

i would be very afraid to stop but you have so much more knowledge than i do i;m sure you know what you are doing and you have excellent doctors to confer with. prayers that this works well for you. will be watching this.....

I am glad to see push back on imaging, in my case CT scans. The drug trial that I was in required a CT scan every 84 days. Now I get a CT scan once a year which is still one too many.

I remember several years ago reading an article that the FDA liked CT scans to support drug approvals. In the back of my mind, I imagine the hospital administrators encouraging CT scans to pay for their grandiose imaging centers.

I will print Dr. Lamana's discussion on the appropriateness of imaging in CLL and start the push back.

Thanks for the article and the guidance.

Congratulations on your decision. I have no doubt that there are many of us on Ibrutinib that toy with the idea of simply stopping. There are many reasons why this could be seen as a desirable choice, but each individual is unique. For myself, the maintenance of life has become primarily centered on doctors, expensive drugs, minor drug reactions and limitations. Having lived an active outdoor life sometimes bordering on the extreme, I now sit and read of the travels and adventures of others. I believe each of us has that innate intuition (angel on our shoulder) that lets us know when enough is enough and when its time to roll the dice.

I wish you all the best dr.b.koffman and hope you have a peaceful journey to where ever your heart leads you.

bkoffman
bkoffmanCLL CURE Hero
in reply to middleway

All of us are different. I stopped because I was U-MRD from my CAR-T trial. U-MRD almost never happens with Ibrutinib as monotherapy.

Thanks for posting Brian,

It's a brave decision to stop, but will tell you more about where (if anywhere) your disease is over the next chapter.

Damned unlucky catching flu at the same time as stopping Ibrutinib, must have been a very scary and uncertain few days.

Heres hoping for a very long remission

Best

headjog

bkoffman
bkoffmanCLL CURE Hero
in reply to headjog

Thanks.

Brian, I stopped Ibrutinib last November having taken it successfully (effective and without side effects), since March 2015, (subsequent to two courses of FCR). I was advised to stop because I developed a potentially more serious cancer and the new drugs were thought to be contraindicative with Ibrutinib.

I'm still regularly checked for CLL progression, but up to last week, my last check-up, there are no signs of the CLL, bloods as good as ever and no physical changes. Of course it may not last but it's very encouraging.

My second cancer treatment is scheduled to last a year. I have already chatted to my CLL consultant about what we will do then if the CLL hasn't progressed. It's a problem I'll be pleased to have.

I wish you continuing good health.

Roger

bkoffman
bkoffmanCLL CURE Hero
in reply to RogerPinner

Glad to hear your CLL is behaving. Encouraging. Often other cancer treatments also help control the CLL. Thanks for sharing your story. Wishing a long long ride.

Wishing you all the best with your decision. Take care Cindi

Congratulations. I know you have access to the best doctor and more information than most of us, so I know it was an informed decision. Keep us posted!

Hope it all goes well Brian.

Good luck on your drug free journey Brian !

Dana

My husband is in a clinical trial at Swedish and they want him to continue treatment until it finishes at 18 months. All of his blood work has shown him in normal ranges for the past 6 months. He is going to become a patient of Dr. Kipps when we retire near San Diego in the next few months. My question is, would Dr. Kipps take him off of the trial since his blood work is normal?

bkoffman
bkoffmanCLL CURE Hero
in reply to Pinhead1

I am sure Dr. Kipps would be pleased to follow you and he is a great doctor.

Wow Brian, watershed moment. Congrats!

Do I remember you're taking IG?

bkoffman
bkoffmanCLL CURE Hero
in reply to hawkeagle

immunoglobulin levels are still very low so I have an IVIG infusion every 7 weeks.

THANK YOU for this site, your story, your ongoing support, your courage and your good news! Praise God.

My husband has 17p. Scares me but you have given me great hope.

May God continue to bless you. And thank you because this is an amazing place to go when you’re scared. Comfort and support. Thank you.

bkoffman
bkoffmanCLL CURE Hero
in reply to Shalom33

Thanks so much.

BK,

It seems to make sense to discontinue a drug after having reached UMRD.

I spoke to one of the Genetech research directors in January, and it was my understanding that they received approval for discontinuation during trials with venetoclax as MRD being the standard measure.

Here is a venetoclax related publication suggesting such, however it also states that relapse/refractory occurrences usually occur within 24 months.

ashpublications.org/bloodad...

I discontinued treatment 3 months ago, and I am 8 months post UMRD from O+V, and counting (16 more to go). I too am having some mild cytopenic issues with low IgA at 72.8 and IgM at <12.00., however ANC is holding at 1.8.

I wish you the best,

JM

Great article JM.

Thanks,

Jeff

bkoffman
bkoffmanCLL CURE Hero

Cytopenias are common with V+O . You likely have few or no B cells so no antibodies are being made. Me too with low immunoglobulins. There is good data that folks who reach uMRD with V+O have very durable remissions. There is less data post CAR-T, but the little that there is encouraging though not 100%

Smakwater
Smakwater
in reply to bkoffman

I was hoping for B cell recovery.

bkoffman
bkoffmanCLL CURE Hero
in reply to Smakwater

Me too

Good luck. You are brave.

bkoffman
bkoffmanCLL CURE Hero

As Spock would say: Seems like the logical thing to do.

You have done so much for others for such a long time. I hope you remain cancer free for a long long time. Best to you!

bkoffman
bkoffmanCLL CURE Hero

Thanks

My doctor thinks I may be a good candidate for stopping IMBRUVICA after 3 yrs since my labs are good and no major side effects. Have mixed feelings about stopping, sort of a catch22 situation-doing well because I'm on IBRUVICA. If I stop, what happens then? Will discuss at my next appt later this month. Thanks for your insight.

Stop and get another opinion before stopping the drug.

What your doctor is suggesting is not proven science that I have heard of.

You are right about that. The doctor is doing a study of patients that have stopped the medication, not a trial. We'll see what he says at my next visit. He ordered a flow cytometry test.

bkoffman
bkoffmanCLL CURE Hero

I would be hesitant to stop the ibrutinib unless your disease is undetectable. Get a second opinion. Consider our free Expert Access Program if you live in the USA, Brian Koffman CLLSociety.org

Thanks for replying and keep up your good works at the CLL Society! You have wonderful insight into all things CLL and help a lot of people.

Brian,

Thank you for going into uncharted territory and taking us along your journey. For me, following your story has given me hope. Stay well!

Sandy

You may also like...