Hidden3 years ago

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

81ue in reply to Hidden3 years ago

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

lymphomanewstoday.com/2020/...

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Hidden in reply to 81ue3 years ago

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

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carol_h3 years ago

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

Jacksc063 years ago

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

cllady01Volunteer3 years ago

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.

bkoffmanCLL CURE Hero in reply to cllady013 years ago

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

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cllady01Volunteer in reply to bkoffman3 years ago

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

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Sushibruno in reply to bkoffman3 years ago

Hoping that You're cured Brian 😊!

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bkoffmanCLL CURE Hero in reply to Sushibruno3 years ago

Me too.

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igawa263 years ago

Praying for you and your friend. 🙏🙏🙏

81ue3 years ago

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

bkoffmanCLL CURE Hero3 years ago

Thanks

Abc123qaz in reply to bkoffman3 years ago

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

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bkoffmanCLL CURE Hero in reply to Abc123qaz3 years ago

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)

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Abc123qaz in reply to bkoffman3 years ago

Thank you so much Brian.

Eileen

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bachplayer133 years ago

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.....

Hidden3 years ago

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.

Hidden3 years ago

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.

bkoffmanCLL CURE Hero in reply to Hidden3 years ago

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.

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headjog3 years ago

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

bkoffmanCLL CURE Hero in reply to headjog3 years ago

Thanks.

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RogerPinner3 years ago

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

bkoffmanCLL CURE Hero in reply to RogerPinner3 years ago

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.

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Cindi733 years ago

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

thompsonellen3 years ago

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!

J_883 years ago

Hope it all goes well Brian.

studebaker3 years ago

Good luck on your drug free journey Brian !

Dana

Pinhead13 years ago

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?

bkoffmanCLL CURE Hero in reply to Pinhead13 years ago

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

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justhawk3 years ago

Wow Brian, watershed moment. Congrats!

Do I remember you're taking IG?

bkoffmanCLL CURE Hero in reply to justhawk3 years ago

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

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Shalom333 years ago

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.

bkoffmanCLL CURE Hero in reply to Shalom333 years ago

Thanks so much.

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Smakwater3 years ago

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

Justasheet1 in reply to Smakwater3 years ago

Great article JM.

Thanks,

Jeff

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bkoffmanCLL CURE Hero3 years ago

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 in reply to bkoffman3 years ago

I was hoping for B cell recovery.

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bkoffmanCLL CURE Hero in reply to Smakwater3 years ago

Me too

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Enice3 years ago

Good luck. You are brave.

bkoffmanCLL CURE Hero3 years ago

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

Psalm46103 years ago

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!

bkoffmanCLL CURE Hero3 years ago

Thanks

clladytime3 years ago

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.

Justasheet1 in reply to clladytime3 years ago

Stop and get another opinion before stopping the drug.

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

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clladytime in reply to Justasheet13 years ago

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.

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bkoffmanCLL CURE Hero3 years ago

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

clladytime3 years ago

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.

Sojomama133 years ago

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

Mik_3 years ago

Hi Brian,

First of all thank you very much for your posts and blog. The answer and description from real patient who is MD much more helpful compared to forecast from just MD :).

I have different Lymthoma - mantle cell but the treatment option are similar to CCL R-Chorp Bendamystin, Rituxan, ibrutinib/acalabrutinib and CAR-T as a final opportunity.

I was surprise you was under Ibrutinib after CAR-T. I was sure that you failed finally BTK and need CAR-T there isn't a reason to continue. Can you please clarify?

Besides, since you was so long on BTK and even travelled to sunny Spain. How did you tolerate sun, have ever develop suntan being under ibrutinib?

Stay Healthy, Safe, and Productive,

Mik

bkoffmanCLL CURE Hero3 years ago

Ibrutinib improves T cell function, hence the benefit post CAR-T to help the modified T cells do their work. Also I had ITP that is auto-immune and Ibrutinib can help with that too. Never had any problem with the sun.